jenglynn

Bren,

Thank you so much for the compliment I know I certainly don't speak for everyone, but it is nice that sometimes my words and experiences can express how someone else may be feeling.

Sandy,

As sorry I am that your marriage ended in divorce, I am happy to hear that you found the positive in your condition and realized that life is precious and all the more precious when we suffer from an illness. I congratulate you greatly on your new found love and upcoming marraige and I wish you all the happiness in the world. I really love your positive attitude and even if you can't work you were able to find the positive and a way to make it fun and to realize a dream you've always had.

I have had a VERY hard time dealing with accepting my illness. It hasn't been long (diagnosed in August 2011) but the severity has progressed quickly and I have gotten to the point of being bedbound and disabled by November. I am still struggling but I have decided that there is a LOT I need to learn about WHY I was "chosen" to have this condition and how grateful I am to my loving husband to is always there for me to hold me, help me, and advocate for me. I also have a lot of friends and families who are amazing support. So my New Years Resolution was to begin Gratitude Journals to write in daily and it has helped me immensely in recognition of what is POSITIVE in my life and not only what is positive in my life that WAS there... but what my life has become. The title of my journals: Gratitude Journal (General gratitude- everyday life) Family Journal (This journal is devoted to being grateful to all the help and support I get from my family, especially my husband who is the one one does the most. He went from having a wife who did everything to a wife who can do nothing- we have SIX children and a very busy, chaotic life. His life has changed as much as mine. I tend to expect things to be the way before and I have to accept that will never be. He is never going to do things the way I want them done. I have to realize he is doing everything with one parent instead of two. So this journal is especially devoted to finding ways to appreciate everything he (and other family members) do to help me and make my life is made easier and happier. This has helped a LOT in me realizing how MUCH he does actually do- and at the end of the day when I write in my journal, I am always happy to give him a big hug and kiss and a thank you for everything. Last Journal I call the Challenge Journal: (This journal is dedicated solely to our illnesses and conditions and what I have learned from going through this, things that may have made me grateful, and how life's priorities has changed for me. My perspective is a lot different than it used to be. My VERY first entry was this: I realized that before as a busy working mom who did everything... would come home, fix dinner, help with homework, laundry, housework, etc.... and with six kids there was always someone wanting to tell me things and ask questions.. and more often than not I would listen halfway or tell them: "Okay, after I finish A, B and C we will talk" because I was just so busy. Now, (unfortunately or not) most of my time is spent on the couch or bed and I have all the time in the world to talk to my kids... and I have to say I am so much closer to each of them since the illness began. I am not sure that would have happened without it. I am not sure the kids would agree as much- because I know they miss their "old" mom and this has been a trauma for them as well.... but they do love having me be much more available to them.) I have found lots of entries to put in the Challenge Journal although I will be honest enough to say it is the hardest one for me because I am still struggling with pain, sickness, resentment and wanting my life back. BUT... every single day I make myself find at least 3 things to be able to find gratitude for and so far I have always been able to do it.

Thank you Sandy for sharing your story because I was able to find some hope that maybe someday I will be in your positive frame of mind. I have not gotten there yet, but I am working towards it. I also know that with the severity of my illness I most likely will not return to work but I need a sense of purpose and I am searching for thatl I know I will find it.

Jen

GOOD LUCK with your treatments!!!!!! I didn't have good luck with mine (ended up in anaphylaxis and now going through rejection of the IVIG for the next 10 weeks- but we found out after the fact that I have really mean antibodies who don't like to play nicely I don't want to scare you because those types of reactions are VERY rare. The pretreating you is important and you may feel slightly flu like tomorrow and might have a headache as well... but mine were always worse on the day of so you may be lucky and feel better tomorrow than you thought you might.

Sounds like your vitals did very well during the infusion. My BP (which is extremely low usually as I have OH) would get really high- once as high as 190/130. SO the fact that your vitals stayed stable is a good sign. I also had problems with shortness of breath after treatment but that is not unusual for me either, I struggle with shortness of breath of a daily basis.

I pray that you continue to have successful treatments and that this treatment work for you. I went though 7 treatments before I had to stop so please feel free to ask if you have any questions... just because it didn't work for me, I learned a lot about the treatment and from the doctors.

Jen

Hi Naomi,

Not specfically in health care, but I worked in the health insurance business. I worked for the Medicaid program in Wisconsin. I worked on claims, authorizations and as a patient advocate.

Jen

Oh, and she also said that she doesn't believe in diagnosing EDS while patients are undergoing testing for more serious conditions because it tends to "confuse" the issue and connective tissues have nothing to do with autonomic dysfunction. That made NO sense to me. Either I have it, or I don't???? I am sure there are other DX on my extensive list of problems that may not directly relate to my Auto Immune Disorder or Autonomic Dysfunction Neuropathy. There is not even any definite coorelation between the Immune Disorder and the Autonomic Failure. I kept questioning the hypermobility in relation to Autonomic Failure and every doctor just dismissed everything that I had to say/offer about that. They would not need even look at even research to see if there was a possibility given the hypermobility/connective tissue disorder/possible EDS... would they PLEASE consider it???? Another factor, my 13 year old daughter was also diagnosed with a connective tissue disorder at 12 months old- due to significant development delays (sitting, walking, etc) and continues to show symptoms and sign of this disorder- at 13 she has already had 5 syncopal episodes not due to needles, shots, blood, etc. It just seems TOO much of a coincidence to me to at least not look into.

Jen

Thanks Anna~

While I was inpatient at Mayo the genetic counselor said I met all of the criteria of EDS but she preferred to use the dx of "Connective Tissue Disease" because she doesn't like to "label" patients with EDS with Autonomic Dysfunction because Mayo doesn't tend to connect EDS with any kind of Autonomic issues. I am very hypermobile, very hyperextening joints, dislocated several joints on a regular basis, have had several ligament severed in my life, have very stretchy skin, can "pass" easily all of the "tests" that they give to determine EDS. Not sure if that answers your question because it sure doesn't answer mine. I asked her: "SO if I had NO autonomic issues, would you diagnose me with EDS?" She said she likely would but it is a "useless" DX especially in light of my more serious conditions. So, Anna, I guess I can't answer your question... but I think it is very likely that I DO have EDS but the only DX on my record is "Connective Dissue Disorder."

Thanks!!!

Jen

I know I recently saw a topic about this recently but couldn't find it- rather appropriate I guess because I can hardly see a thing I have always since a young child had very enlarged pupils- I never knew that it was unusual or an issue- the only reason I even noticed it was because hardly a day would go by when someone would not comment on how large they are. At various doctor appts. throughout childhood they would all comment on them but nothing more.

When I was at Mayo, the neuro commented on the large size of my pupils and the fact that my left pupil is "significantly" larger than the right. I should say that my pupils stay large no matter where I am but they do constrict appropriately if a light a doctor shines a light in them. I have always been near sighted and had a very hard time seeing at night and that has gotten worse as times has gone on. Over the last 3 weeks I have noticed the following symptoms, that are new:

- Frequent double vision- much worse as I am tired but happens most of the time. This is not just during syncope or pre-syncope spells. This will be even while I am lying down.

- Lots of "floating objects in front of my eyes- spots, shapes, bright colored objects, or any kind of strange shapes and objects that just "appear" in front of my eyes, ect that just appear. This also happens all day. There is no rhyme or reason.

- Very blurry vision- much worse than normal near sightedness

- Sometimes a strange version of regular double/triple vision, I will have strange double vision where I will see two or three of things but not side by side- more like all over the place, but they are actually the exact things that I am seeing... just seeing them in double or triple but in odd form. Maybe one on top, one on bottom and the other could be to off to the side.

-Chronic dry eye (I have had chronic dry eye and mouth for months) but the dry eye has gotten worse lately- it feels like my eyes are dry and gritty all the time and painful like I am tired, even when I am not sleepy.

Question... On Friday, I did report this via message to my Mayo neuro, but have not heard back from him yet- but should I see a opthamologist? Is there anything they can help with or is this is a purely autonomic/neurology problem? What does it mean to have chronically enlarged pupils and floating objects in front of my eyes? These are new and slightly scary symptoms to deal with. I felt when I brought up my visual concerns while inpatient at Mayo there was some sympathy but my concerns were never really addressed and I need to know if they need to be looked further at, or is this just one more thing we deal with and can't be helped? Any input??

Thanks for any help!!!! Especially for those of you going through this.... Appreciate any and all input!!!

Jen

Oh, of course, no need to be sorry. Of course, I think we all agree that any life threatening illness, not only to experience it ourselves, but to watch any of our family members suffer through it, would be tragic. I am glad you brought it up because it makes it us realize that things can always be worse or harder for someone else. I just wanted to relate how difficult my experience has been- not trying to compare the difficulty to cancer- other than to say that there is not a specific protocol for our condition the way that many other illnesses have.

Jen

I am sure none of us would prefer that we (or one of our family members) would have cancer. But actually DEALING with P.O.T.S/Autonomic Dysfunction/Dysanonmia can be so frustrating. From the very beginning, the diagnosis is so frustrating. How many of us went in at the beginning at were NOT told that we didn't have anxiety or depression? Before I was diagnosed with P.O.T.S, I was diagnosed with anxiety, depression, adult onset asthma and an inner ear infection (because of my syncope). It wasn't until I wore a Holter Monitor that showed multiple episodes of sinus tachycardia. So then, three months later, they FINALLY started looking more in the right direction. Eventually, I was diagnosed with P.O.T.S after a stress test (which I collapsed on the treadmill) and a positive TTT. But this was months later. I started having such shortness of breath and was constantly told it was anxiety... and I could remember the EXACT day that I started having the shortness of breath- it happened suddenly. Yes, I had anxiety but that didn't come until AFTER the other symptoms. Of course I was anxious... I am fainting and can't breathe!!!!

My symptoms just got worse week after week and by November (first syncopal event of this flare was in April) my BP was plummeting and I was having 20+ syncopal episodes a day and have had 7 concussions. I was in the hospital from Thanksgiving to New Years. At Mayo for three weeks- the other at my local hospital. With a consultation at UW-Madison- Even at Mayo, they can't "fix" me. I am no better now than I was when I was admitted. They came up with some diagnosis' but can't put the puzzle together. They tried IVIG which failed miserably and put me in a terrible rejection and now I feel like I have taken 10 steps back. Now my blood count is showing it... organs are not working properly. Syncope, HR, OH is no different. Other symptoms have appeared.

I am not saying I would rather have cancer- I would NEVER say that. I have nothing but sympathy for anyone in that position or a life threatening disease of any kind. I just get frustrated with the LACK of answers. The LACK of doctors who take an interest in the condition. The doctors who instead of taking it upon themselves to do some research on the HUGE amount of research that is out there to help us, instead they just dismiss us completely. Because it is not one of those conditions that is obvious to others, it is often ignored by our loved ones. So many people do not understand ( DOCTORS don't get it, let alone just the average person) so we are often treated with disrespect, as if we are lazy, unmotivated, or hypochodriacs. Many people go through their lives with this debilitating illness alone, without anyone to rely on (I am one of the blessed ones who does not have this worry) but MANY do. "What do you MEAN, you can't stand up for very long? What do you MEAN that your HR goes up because you sit up too long? Why do you mean that you need so much salt? What do you MEAN that you are so tired you can't get out of bed in the morning? What do you MEAN that your whole body hurts because of something called the 'autonomic nervous system.'? What does that even MEAN????" I could go on and on.

I think this illness is just so hard because there is just such a little understanding among just about everyone. Every time we go to the doctor we have to repeat ourselves for the millionth time and by the time we get to the actual appt. all of the time has been used by trying to explain something that should already be understood!!! I personally go to several specialists and it shouldn't be MY job to keep them all informed but that is usually what happens. When I go to multiple hospital systems, it is even worse. I have Care Coordinators at both places but I do 90% of the work. No one communicates. It is an exhausting enough condition to deal with on a daily basis, but to try to manage all of the details and administrative work that goes along with coordinating it all makes it all the more exhausting. We are very sick. We are all sick in different ways. None of us has the same symptoms or story. But we don't have the support systems that people with diabetes, cancer, strokes, heart disease, etc.. have (except for this one ) We don't have the doctors to support us with so many options of treatment. We don't have NEARLY the options of treatment or doctors. We pretty much get what we get.

So I would never say I would prefer to have cancer. But at least with cancer, there are options. There is a clear place to go once diagnosed. There is a clear plan of treatment. Usually, there are clear odds of recovery. Cancer would be a horrible tragedy for anyone or any family to deal with. But our condition has its own struggles and difficulties that I think are quite unique. How often do you try to explain to someone what is "wrong" with you? How do you explain everything that goes along with it? I was discharged from Mayo with the words "Medical Enigma" on my discharge papers. After all of that treatment, testing and two weeks in the hospital... I was diagnosed, given a possible treatment which made me much more sick than I was when I went in) and no real answers. Talked to my doctor last week and he told me that he is "working" on more options but he is not sure what else he could do. I feel like my life is in limbo and am not sure how to move forward with a life in which I can't walk, stand, drive, have to crawl if I must get out of bed, have cognitive difficulties made worse by my 6 or 7 concussions. I am disabled but have no idea if I will ever get better. I can't take the chance of syncope- even with my helmet- because more concussions cannot be prevented from a helmet and if I want to remain "me" all of the doctors have told me this MUST be my top priority.

We ALL have a difficult situation. We all have our daily suffering. Everyone with a chronic or life- threatening disease has a battle they are facing. I just pray that we all get better soon and that the medical community starts to take our condition more seriously. It really is exhausted to live in this constant state of no answers, no help, and a lack of understanding by most everyone.

Love and Prayers to us all,

Jen

I have had a lot of episodes of low HR episodes while I have been lying down. This is new within the last 3 weeks. Usually when I am lying down my HR and BP is normal (I have pretty severe hypotension). When I sit or stand my HR goes WAY up and BP plummets. But lately, while I have been lying down my HR has been getting in the 30's to 50's on a regular basis and BP is normal for me lying down (usually 90/70 or a little higher). My "normal" HR is anywhere from 60-80's.. so this is quite a bit low for me and I am not sure what would be causing it to drop so low. I am not on any other new medications. The only thing that has changed is that I am currently going through the rejection phase of IVIG treatments.

Interesting, I have been wanting to post about this as well because it seems unusual. My situation is a little different as I am pretty much bedridden, do leg exercises and resistance bands with my arms, cannot walk, use a wheelchair except in the home because we do not have an accessible home so I am crawling/scooting around the house. Anytime I am up my HR gets very high... it is only lying down when my HR gets so slow. Can't quite figure it out myself. Any input for both of us would be quite helpful.

Thanks,

Jen

This may seem like a silly question... but when we are talking about P.O.T.S are we talking about Autonomic Dysfunction/Failure Neuropathy (immune mediated or not). but would remission be the same in that case?

Thanks,

Jen

I think part of my problem is that because I am "bedridden" so much I am actually in bed too much of the day. Maybe I need to get out of bed and crawl up to the couch or a recliner so bed comes more synominous with sleep.. That, along with my whole schedule being turned upside down in the hospital has made sleep a major issue. I wonder if that is contributing?

Thanks! Jen

This has been going with me ever since I returned from the hospital in the first week of Jan. (I had been in a hospital since Thanksgiving except for just a few days) Every night I am up until 3 or 4am and just can't sleep until then. So my sleep schedule is crazy out of whack... I either wake up on time at 7 and get three hours sleep or sleep later until after 9 but then my meds are all messed up. Vicious circle.

It feels like in the middle of the night I get this incredible adrenal surges which make it impossible to sleep. And I have nighttime meds I take that I think would make me tired. But nothing seems to work. I am tired all the time too. Maybe I should try Benadryl. That might be help.

Thanks for all the wonderful advice. I think I will try to meet with another doctor- an integrative MD I think was mentioned. I like the idea of someone who is looking at the whole issue. I don't feel like I am skin and bones but the doctor looks only at that 30 pound number of "unintentional weight loss" and becomes concerned and I do appear thin I guess. Every medical record I read says "Jennifer Glynn appears to be thin, chronically ill and blah blah blah." But at 5'3 and 109 not dangerously so... except for like I said I have a different body type that the nutritiounists refused to account for. Purely BMI based. Many of you who replied are MUCH thinner than am. Asking me to lose weight was pretty silly I thought though.

I have never heard of an integrative doctor around here but will start searching. I have never had ANY "tummy testing" done because other the than lack of appetite and feeling full so quickly, I have never really experienced any gastric type of distress that so many of you suffer from daily. My dry mouth and swallowing issues also contribute a LOT to my eating problems because unless it is liquid or very soft, I can't eat or swallow it. This has gone on so long, since April, I am just not sure it will ever go away. I wish I could explain it, but just the thought of eating anything is so unappealing. I only eat because I know I have to in order to survive. It is really shocking to me that I would continue to lose weight while I am so bed ridden and can do very little in the way of exercise. You'd think I would be gaining a TON but not expending much in calories at all.

Thanks!

Jen

My iPhone calendar is my very bestest friend. I use it for so many things- I have problems remembering to eat so I set reminders for that, for meds (I saw Claire said she found a great app for that...I will need to look into finding that!!!!!) I set every appt. from doctor to kid stuff in my calendar (and so many things through sports and schools can just automatically be synced right in so you don't have to even enter them). Plus, it has an option for 2 reminders... so I always set one for one day in advance and set the other for 2 hours in advance in case I forget as happens a lot. So both of those reminders pop up to remind me. I also carry a small notebook with me everywhere to jot things down as needed and then I try to transfer those to an appropriate place at the end of the week (I am mostly bedridden so it isn't like I am out and about so much)... so if I get an email address or something I put it in my contacts and cross it out of my notebook for example.

Jen

I was in a kind of odd situation in where my GP doctor who I have been seeing for years and I really had to learn about POTS and the ensuring DX that came along with it, together. We didn't get a lot of help from specialists until I finally got the positive DX on the TTT and even then- neurology wouldn't touch me and cardio didn't want me. So we just worked on getting me to Mayo, which finally happened and at least I received the different diagnosis' that I needed- even though they were not what I wanted to hear.

On to your question though, she was always willing to try different things with me because she knew me so well and could tell how fast I was deteriorating because we have a history. She could tell a difference in how I talked, the brain fog, the concentration, just in trying to talk to me. I saw on the Dinet site that certain ADHD/ADD drugs can help so I suggested that maybe we try Adderall just to see if it would help me with my concentration (I am also a full time grad school student- online program so I NEED to be able to focus). She was very willing to give it a try and see how it works. She had prescribed me Paxil 2 weeks before and the combo on the serotonin in the anti depressants and the dopamine in the ADD drugs is supposed to help certain patients. In MY case, it could not have been more true. I am pretty much completely disabled so I can't speak for work exactly, but I am able to carry on conversations easier, find words in my brain more often where before I would just lose my train of thought. AND...I have to say that they combo of those two drugs together made an enormous impact on my anxiety- to the point where I just really didn't have it anymore. I am on a very low dose and I recongnize the addictive properties but I also think that if my body didn't need it in some way then I would have had a more negative reaction vs. what I've had. It hasn't changed anything really... I don't get hyper, I have not had an appetite decrease (I have had zero appetite but that way pre-dated starting the Adderall) and I sleep fine except when I am having adrenal surges like tonight. It doesn't make me feel anything but calm.

I am very aware that this is controversial and these drugs are as well. Many people strongly are opposed to them being taken for our purpose. I was at a point where I really needed some cognitive help and my doctor could see that clearly in her history with me so we decided to give it a try. In my case, it has worked great. I am sure that it would not work in all cases and there are risks to consider (raises blood pressure, HR, decreases appetite, causes weight loss, etc) I even debated about responding because I know how these discussions can get heated. All I can say is that for me... it has been a success and of all the drugs I have tried it has been the most beneficial (along with the SSRI) to help deal with the anxiety and cognitive function.

Not a decision to take lightly though... Do lots of research and realize there are risks such as the side effects I mentioned above as well as others and of course the risk of dependence. Good luck and feel free to ask any other questions!

Jen

This is frustrating.. and I don't think I am underweight by medical standards (although my hubby drastically disagrees). Being 109 lbs at 5'3 is not all that alarming... but my normal weight has always been between 125-145, in that range. I am pretty large chested (I wear a 36 F cup) and unfortunately after losing all of those 30 pounds... NOT a pound came off the boobs! Hardly seems fair! I tend to be a bit bigger and curvier so 109 is a very low weight for me. 120's I think is even a bit low. I think I look best in the 130's... At 135 I wore a size 6 and that seemed to be a pretty healthy weight. Getting into the 140's I start to look a little chunky.

I did speak to a nutritrionist who saw me in the hospital a couple weeks ago- I was pre- menstrual and I always gain 5-10 pounds of water pre period and lose it during my period. So when she weighed me I was 117 lbs and she actually said I was overweight so the whole point of her visiting took a turn. Trying to "limit" calories, my ideal weight is 110 lbs according to her BMI chart so I really did not get the info I was needing. I told her, regardless of what she thought of my current weight, I have lost 30 pounds pretty quickly and I need ideas to get enough calories to maintain. I TOLD her I was premenstrual and would lose 5-10 lbs with my period (she didn't believe it was possible)- well I was dischargede at 119 and at the end of my period I was down to 109... Just dislike so much when these people follow their beloved charts but won't look at us as individuals. Obviously, with the size of my chest I am not healthy weighing 110 pounds. I look ridiculous.

All she told me is that I can receive everything I need from Ensure every day and not ever have to worry about my health as long as I am getting enough/or not too many calories to maintain a healthy weight. I kept going back to the 30 pound weight loss and how I have to bring that to a stop and she just said the Ensure would be fine. But the appetite thing... HUGE issue. Not only do I never have a desire to eat. NOTHING sounds remotely appealing. Not to mention I suffer from a swallowing dysfunction and VERY dry mouth... so eating pretty much any real food is a challenge. My hubby usually makes me one very healthy smoothie a day that I drink. I drink at least 2 more Ensures.. and then I eat either yogurt or pudding. I am not able to swallow anything else.

Another question I asked her... which of course she had NO clue about what I was talking about.. maybe some of you do! If we have tachycardia ad our heart rates are high for a significant part of the day... should we increase our caloric intake as if wee were exercising because our heart is working harder or no? She said she had never heard of such a thing so I should be at about 1100 calories a day. I think I should be closer to 1500-1700. I requested another consult who told me exactly the same thing. My husband about had heart failure when they advised I lose about 10 lbs.. lol. AND lower my calorie intake to 1100 a day. But I was just curious if anyone has had it suggested that because of our hearts working so hard if we need extra calories to compensate???

Thanks

Jen

I have been through a lot of difficult things in life... growing up in an abusive home, drug addict parents, (POTS symptoms young but not disabling until recently), abusive marriage to first husband who was a compulsive gambler, made the decision to divorce him after a 10 year marriage with four children ages 2-8 years old, being a single mom with very little help to four small children not feeling well (realize now that my symptoms were probably just starting to get worse) marrying my second husband who is wonderful but we have SIX kids between us and the amount of effort it took initially to "blend" our family was emotional, exhausting, heart breaking, wonderful, horrible, heart warming, terrible, you name it.... it was hard but amazing now that five years later we have these kids who don't even remember that they aren't "real" siblings. I can probably name 100 other things that were hard.

But BY FAR, the hardest thing I have EVER done is face this conition, every day with a courage I don't feel because I feel like I am failing everyone in my life. My children should not take care of me. That is MY job and MY job to take care of them. It breaks my heart to open my eyes after a syncope spell and see their faces over mine... and I wonder... how long do they have to stay strong? Is this changing who they are? The stress, the instability. The physical changes they have seen. The hospitalizations they've witnessed. The head traumas they've witnesses after bad syncopal spells (these are by far what worry me the most.). The uncertainty I feel because even with diagnosis, I am not improving. I thought Mayo would be the answer I was waiting for... especially after spending 2 weeks inpatient. I arrived home in even worse condition because their treatment was an epic failure (massive body rejection of IVIG infusions which has resulted in a ton of other health problems and not changed my original problems at all). Over a month in the hospital and I feel like I have taken ten steps back. NOW what? They are working on other options for me, but I can't receive any treatment until the IVIG is all out of my system... late March. And I go through the allergic reactions and rejection symptoms through that time. The whole process of trying to get diagnosed. Getting someone to listen initially. NOTHING about this condition is easy. No one understands it. I find myself explaining it over and over again to the point where I just want to print out papers with a definition because half the time I am so short of breath I can hardly talk. Every new doctor I see.. God Forbid he reads my chart in detail and does a little research on his own. I spend the majority of our appt. time doing HIS job and catching him up only to be told that there is really nothing he can do for me.. because this isn't his "specialty". So, Dani.. excellent question. This IS the hardest thing I have ever done (and a story for another time... but I once gave birth to my youngest child now 8 and perfectly healthy in a STAT C-section with NO anesthesia except local shots in my belly- because a small hospital and no anes. doc on staff and she needed to be out NOW so no time for anything but to cut her out- yes, that hurt but doesn't compare to this). From the very beginning of trying to get a diagnosis, to trying to get through the mornings, to trying to explain to family and friends, to trying to even GET to the doctor appts, to the syncope, and all the other horrible physical and mental and emotional symptoms, and the fear of never getting better, to being up all night almost every night my body is surging with adrenals that think nighttime is the time to play, to trying med after med hoping each time... MAYBE this one.... yet so far... none have been my answer. It goes on and on and we all understand it because while we all have our own battle that are individual NO ONE else can understand like we can because the ability to not control one's body is a concept you must KNOW to understand. I told my husband the other day.... DO you understand that I have this physically healthy body that COULD be capable of walking 10 miles, or shopping at the mall all day, or cooking dinner, or standing upright for more than 30 seconds but my brain controls the ability for my body to any of those things and because of that... I can't. Not because I don't want to. Or I am not trying hard enough. Or I have been too lazy. Because I just CANNOT DO IT. My brain is a complete maze of wires, nerves, and functions that NO ONE understands. Not my family doctor. Not any doctor at my home medical center. Not any doctor at

UW-Madison, not even the doctors at Mayo. Certainly not by me. The ONLY thing I know about my brain and body at this point is that I cannot rely on it. I cannot trust it. And it has betrayed me. When Mayo says they can't figure out what to do to fix the different diagnosis' that THEY gave me... WHAT DO I DO???? Live in bed forever? Is that my fate?

OMG.. Dani... I am so sorry. I took your post and turned it into my own venting, crazy diatribe full of my own frustration, confusion and feelings of being lost. Simple answer would have been... Yes... Autonomic Dysfunction/Failure/Neuropathy whatever they want to call it... or even POTS... is the hardest thing I've ever dealt with. And I am SOOOOO sorry that every one of you have to deal with it as well. I wish I could take it away and heal each and every one of us.

Jen

I have tried Florinef twice because with my symptoms- very low BP and high tachy- it would seem logical. It does make my cognitive function suffer and the headaches are not tolerable. To me, within 20 minutes of taking it I feel like my head is in a pressure vice. I deal with a LOT of migraines and headaches (post concussive syndrome and 6 concussions all from syncope). I think with the head trauma I have had that the increased pressure it creates in my brain just increases those symptoms and makes it even harder to concentrate or live any type of life- even when I am in bed.

So for the second time I stopped it and won't be trying it again. I still take Midodrine which also has side effects I don't love but I can tolerate. I do think I get somewhat of a benefit from the Florinef orthostatically but not nearly enough to cope with the major debilitating side effects and I am STILL having daily syncope and chronic OH while on it and Midodrine so obviously isn't my miracle answer. Nothing seems to be yet.

I also pray and try very hard to count my blessings at the end of the day. And I had mentioned in another post that I have a Gratitude Journal dedicated to my husband to make sure I realize everything he DOES for me every day... I also started a small journal in which I find at least ONE thing to be grateful about within this horrible disease. Something it has taught me, a priority it has changed, a new friend I have made... something- every day (and sometimes it takes longer than others and sometimes I come up with multiple things and sometimes it is really stupid like I got to be home to watch a good episode of Dr. Phil or something lame like that) but every day I make myself focus on one positive thing that this condition has brought to me. I know there will come a day that I will be looking at this from the OTHER side of the mountain, still struggling I am sure, but stronger, healthier and with a better sense of priorities and what matters and what doesn't- because that is the big equalizer within this condition. We find out very quickly what really matters and what doesn't, we find out very quickly who our true friends are and who they aren't (and I have to say that this one really surprised me on both ends of the spectrum!), and we find out very quickly if we our spiritual and have a personal faith that we have to hold on to that faith and really trust in a way that I had not been able to do before. It has been a learning experience. But, I do have a strong sense that I will emerge from this horrible episode I am in right now a better person, mother, wife, friend than I was before. On my hard days, I remind myself of that.

Jen

As for our stairs, I struggle, but I make it. I crawl/scoot up and down. We have a basement bedroom but I can't shower at all and have to bathe very quicklly. So we have decided to switch rooms with our girls... they will move down to our basement and we will move our bedroom to the top level where the full bathroom is. So in order for me to get the bathroom- no steps. In order to get to our living area only one flight vs. two. This should help a lot.

My absolute standing limit at this point is no more than 30 seconds. Major BP drop and high tachy. Even sitting I have really severe shortness of breath, tachy and dizziness. Reclined is my only reprieve but NOW all of a sudden I have brachycardia... so when I am lying down my HR is in the 30's-50's which is new within the last two weeks. I have an appt. tomorrow with a group called Wisconsin Cares and they are coming in to assess my needs for a caregiver, get my disability paperwork all filled out and give me all the resources possible for someone who is in my position. I am not sure what this entails but someone referred her to me (I had never even heard of them- they called me out of the blue to offer to help) and she said there is a LOT of help available (even stuff like housework, nursing, shopping, stuff like that) and it is all income based. It is HARD to accept assistance of any kind for me, let alone government, but I feel like our family is really in crisis mode right now and need any help we can get. I have been in denial for a while about how sick I am. But it is becoming painfully obvious to me that this isn't going away anytime soon. Especially while I am dealing with the IVIG rejection. My BP is all over the place, as is my heart rate. Bladder problems, incontinence AND retention, low hemoglobin, red blood cells, high white blood count, kidney function has been affected, low almost non existent TSH (hypertension), lots of different issues which I am fully expecting/hoping/praying that will gradually normalize. I just got a new CBC today so I am hopeful for better numbers!!!

I have been on treatment. I take Midodrine, florinef, anti anxiety meds, salt tablets, STRONG compression and binder, lots of water and gatorade. After being at Mayo, they tried the IVIG which failed miserably as stated and now can't try new treatment of any sort until IVIG is out of my system which is weeks and I will feel the side effects and rejection the whole time. Fun. I go back to Mayo next month for a bladder function test and then back to neuro there for further treatment options they are putting together in March once the IVIG has gone away. They also tried Mestonin which I did not tolerate at ALL. Almost have me a stroke as well as horrible side effects so will NEVER take that again. And yesterday, a whole new symptom came along... uncontrollable leg twictching... as in my ENTIRE leg will twitch violently and I can't do anything to stop or control it. It comes and goes, unpredictably. It last several minutes. It is a pretty scary symptom to me. It happened today during my appt. with my general doctor and she was very alarmed at the intensity of violence of the twitching. Add that to the list. One more part of my body I can't control.

I am hoping that after I meet with Wisconsin Cares and I find out more about resources to help me maybe it will ease his mind. But his fear (in my mind irrational but in his mind not) that I am going to die is at times overwhelming to him. This disease doesn't kill people, right? I have never heard of it doing so unless from a devastating syncopal event and that is why I am not walking unassisted and always have help getting in and out while bathing. Like I said initially, I feel like I have already given up so much of my life and while I know I do not have a "normal" disease, I am still a "normal" woman, devastated to not be doing my job as a mother and a wife, at least the way I used to. And it makes me feel even worse that he is living in this constant state of panic and can hardly function because he has watched me deterioriate so fast before his eyes. I agree with "Thankful" sometimes this whole situation can be harder for the caregiver. They cannot control anything, they can't feel what we feel and they are the ones who have to watch us faint, grow weaker, more disabled, right before our eyes. I realize how much pain it must put him through to watch me have so many syncopal episodes and how helpless he must feel.

I spoke to my mom this evening who is visiting for the week and she said that there are a couple of things she has observed. 1) I expect him to handle everything the way I handled everything- which isn't realisitic. I was such a Type A personality... to a fault. He doesn't have the capability to handle everything the way I would, especially under the circumstances of being a caregiver to me, his mother and being the sole one responsible for taking the kids to everything. Not to mention, his grief in losing the mom he has always known which is happening so fast- she is really deteriorating quickly. Plus, the grief of losing the "ME" he has known as a wife. Our relationship has changed from husband/wife/team to him taking care of and worrying about me. And she also said 2) I need to start appreciating everything he does for me, the kids, every day and and we decided on a Rob Gratitude Journal that I can refer to when I get frustrated and also to make me recognize all he does do and his life and devotion. I realized after re-reading some of my posts, that I may have sounded ungrateful and a little spoiled and selfish. I realize that was the message but not my intent. I am also worried about him and him feeling so much panic and worry about things that really may be far fetched. I know my symptoms are pretty severe but I don't anticipate that I will be spending all that much time in the hospital. We NEVER know and it is a waste of time to try to predict the future. I think I need to maybe give him some extra attention and let him heal a little bit and go through his counseling/outpatient program. I know I am not the only one suffering...our whole family is. I hope I do not sound like this selfish and resentful person. I am just so emotionally, physically and mentally exhausted (as I am sure that my husband is feeling the way). But I guess after everything I just feel like I have so little left to give. My body is just so worn down and shutting down. Feeling that every little decision I make is questioned and calls my devotion to my own healing and health into question wears me down at times. Yes! I drank enough water. Yes! I took my meds! Okay, maybe I don't always make perfect decisions but I would give ANYTHING, and I mean ANYTHING to have my health...and it is not primarily for myself... it is for my family. I am also doing counseling through my employer's EAP program and right now I am doing this over the telephone for right now. We are not in any joint counseling yet but that is coming. My husband took my hand tonight, kissed my forehead and told me he loves me so much and he is sorry if he is driving me crazy but he just worries about me because the thought of losing me is something he can't get out of his mind (and granted he has seen some gory scenes after some of my more traumatic syncopal spells and head injuries- not to mention other organ shut down issues) but he learned in counseling today that his primary role is support, not taking control and worrying every day and really focusing on one day at a time- easier said than done- and making a point to tell me he KNOWS how much I've given up instead of constantly focusing on what I am NOT doing perfectly yet.

Thank you all for your points of view. I know I am a lucky girl. Before he fell asleep (always hours before me- thank you adrenal surges) he kissed me and said "I love you, ALL of you, autonomic you, autoimmune you, syncope you, and the you I fell in love with who is still there and I am NEVER going anywhere. I will always be here to fight for you and if I fight too hard or if it is your fight please just tell me and I will move back to support... but I am never leaving your side." I realized that through all of our conflicts, all of the trauma and stress we've been through, at the end of the day, I am a lucky girl. Thank you all for pointing it out to me when I really needed to hear it! I love this forum for the honesty and advice and I feel like I have progressed in a downward spiral so quickly that I know very little about what I am facing and your knowledge has helped me get the help I need and give me options for the future.

Love and hugs to all of you for taking the time to answer this complicated question/situation. It means so much to me that you would do so.

Jen

Thank you all for the wonderful advice, thoughts and suggestions. One of the reasons I hesitated about posting this topic is because I knew I may come across sounding a little ungrateful because I know how many struggle with family members to take their condition seriously, let alone be caring and concerned. My main concern is how this condition has debilitated both of us. His fear of losing me is always there. I have been so sick lately I haven't been able to do much at all... where before even while bedridden I was able to do the lists, the chores, menus, etc. Since I went through the IVIG rejection, I haven't been able to do much at all.

I know this is just such a difficult time for us to get through. I think he is going through a lot of depression and almost reached a point of shut down. So he did start the counseling and it is intensive counseling- I think it is called intensive outpatient. He goes 5 hours a day. He has always had depression and anxiety- and was once disabled for a year because of severe depression about 12 years ago. So the depression isn't new to him. Nor the anxiety. He has coped very well for a long time but my illness in combination with his mother's dementia diagnosis. Things have spiraled really rapidly with my illness.. like I said I've always had it I truly believe. And to add a little MORE history... I started the year of 2011 in the hospital with acute appendicitis so I was out of work for a while for that- then 8 weeks after that after being back to work for 2 weeks I dislocated my knee and needed yet another surgery and was out of work another 6 weeks... Well.. My FIRST day back to work after that surgery was my FIRST syncope spell of this "flare" (early April). I had NO idea what was wrong with me but it started with the dizziness, syncope, then shortness of breath, I wore a Holter Monitor for 30 days until Mid-May ... well I wasn't diagnosed with anything but anxiety and low iron until I went to see a hemotologist in late August to treat my iron. By this time I was SOOO sick, I could hardly catch my breath, was exhausted ALL the time (still trying to work) still having dizziness and syncope. My doctor decided maybe iron infusions would help. The Hemotologist said that he could see I was chronically sick due to weight loss and my pallor but didn't attribute all to anemia. My hemoglobin was low but not dangerously low. So he started worrying about a blood clot in my lung and other things... So he listened to my heart- normal- had me stand up and walk a little bit and much to his surprise my heart rate more than doubled. He asked if I had any heart tests done... I said an EKG which was normal and a Holter which was also normal. So he pulls up my chart and looks at my results and tells me with a look of shock that in over 4 months no one had read my Holter results. So he opened it up and it showed several episodes of sinus tachycarida- many daily episodes in which I had recorded symptoms. SOOOO.... I progressed so much worse during those months that it was pretty upsetting to us that such a key test had been glossed over. So, bottom line, it was a very long and exhausting year for me medically and for him as a caretaker. So I began the year 2011 in the hospital and ended the year in the same hospital.

As for his job, he was more of an independent contractor working with two other guys and they bid on contracts and met deadlines so they basically said if he couldn't be at work then he wouldn't be getting his share of the contract. It was upsetting and he had put in a lot of hours already on the job and the way it was done seemed heartless right before Christmas while I was in the hospital but a deadline is a deadline... and we understand the way that it works as a building is going up. SO FMLA was never an option.

Another question, in your opinions... because while I am not new to the "condition"... I've had it mildly my whole life... but new to the severity and diagnosis that I have... what are the realities of having to be hospitalized? Is it something that I should expect to happen with frequency like he expects or should it be a rare occurance like I expect?

Thank you!!!!! Your thoughts and advice is so appreciated!!

I hate it too. I haven't had a teaser good day in a while, but think that would be just as bad as having bad ones all the time in a way. You think... Maybe??? Am I getting better?? Then, if you were like me...would probably overdo it to the point of excess and be 10x worse the next day.

Most of my pre-syncope ends ups in syncope.. but mine is almost always a "black out" sensation even before I actually lose consciousness... even on the rare occasions where I catch myself and can get myself down in time... I can't see or hear a thing.

It is just a very difficult illness to cope with. One of the OT doctors I worked with at Mayo said the hardest thing for me to overcome would to to learn to trust my body again. I think about that a lot and the fact that at this point I have NO trust in it whatsoever. How can I????

(((Hugs))) Wishing you more good days in the future!

Jen

Hi.. Warning.. this will be long as most of my posts are... kind of complicated and a lot to explain so thank each of you who make it through to the end Or even those of you who make the attempt!!

Debated about putting this on this board but I need some advice with my husband. I hope someone can help because I am at a loss! Quick update of my condition for those who don't know- was hospitalized for the most part from Thanksgiving thru New Year- first at local hospital with no autonomic expertise but admitted due to head injury and concussion #6 after syncope ( had concussion #5 10 days prior and 4 of them within the last couple of months so preventing head injury is imperative at this point- assessment shows cognitive dysfunction after last concussion so have further testing upcoming-- have serious OH with LOTS of syncope- many x daily if I were walk around normally) Then at Mayo for a couple weeks and diagnosed with unspecified autoimmune deficiency disorder, EDS, and autonomic neuropathy and failure among some other things as well. Still no major answers for me, even Mayo considers me a "medical enigma"- in their words in my discharge papers (thanks a LOT!) Then back to local hospital for another couple weeks in inpatient rehab. Have been home for a little under 2 weeks. Pretty much bedridden, wheelchair, or crawling, scooting where I need to go around the house- still have lots of OH and syncope and tachycardia. Tried IVIG beginning while inpatient at Mayo and first 2 weeks after I got back to my hometime hospital- and going through rejection right now and feel as if I took 10 giant steps backward since I went to Mayo because of dealing with IVIG rejection. (Initially we thought severe allergic reaction due to one bad reaction and then near anaphylactic- after blood tests it shows that body is in full rejection at this point) So basically, that is where I am right now. Initial symptoms of this flare began in April but did not get completely disabling until early Oct. so very rapid decline. Believe this is lifelong condition for all DX but this is worse flare by far ever. Onto to my hubby...

He is so completely overprotective and driving me crazy. He won't let me do ANYTHING for myself. I am used to being so independent and have functioned with the pain and symptoms of these conditions for my whole life before being recently diagnosed. I dealt with it.. granted it is debilitating this time, but in the past I always was very self reliant. He has these fears that I am going to be constantly in the hospital. He talks about it ALL the time. He won't make plans to look for a job (he was fired the second day I was at Mayo because he had missed too much time at work- he is an engineer and they have deadlines and projects have to be finished and he wasn't there..) because he thinks I am going to be constantly in the hospital and how can he work, handle the kids (we have SIX!) AND deal with my "severe" illnesses and hospitalizations he seems to think I will have after starting a new job. I have told him so many times... These are chronic illnesses that should not cause frequent hospitalization. I am in the process of looking for help at home so he doesn't have to do so much (to add to the stress... his mother was JUST diagnosed with dementia and she is a diabetic w/ out of control blood sugar and we just had to put her in a nursing home until we can find proper placement for her- he is an only child so he is all she has- his Dad died when he was 13-). I can crawl into the restroom and use it. Unfortunately, due to some system problems (hate admitting to this) I have a lot of bladder issues- some full loss of bladder control, leaking, or complete retention. My body doesn't believe in Happy Mediums I do have to use Depends for now because it is so unpredictable. I can scoot around for the most part and do okay but raises my HR quite a bit... we live in a tri-level house so the stairs can be a problem but I can scoot up and down them infrequently.. but I try to do as much for myself as possible.

Even at rehab, they discharged me saying that they were amazed at my mobility (I have EDS and pretty hypermobile but luckily I am able to move quickly for transfers, etc) and my strength especially considering how much time I have to spend in bed. No atrohpy. I have this perfectly healthy body physically except for the fact that my brain can't control it. They told him that there was nothing more they could do for me. I think he expected me to come home cured. Yet, after IVIG rejection, I come home worse. He is in constant fear that I am going to die. I try and try to tell him that I am NOT going to die. (Well... of course I WILL die, but hopefully no time soon!!!!) These conditions typically do not kill people. Of course, we are ALL doing to die, I say, but in all likelihood I won't die from this. I may be disabled, but I am not terminal. But HiS fears are irrational in my opinion but very real to him. He reads and researches too... goes to my appts. so I am not sure where he gets these ideas. He is obsessed with my weight loss (30 lbs in last few months). Obsessed that I don't have an appetite and hardly eat. Sees me "wasting away" in his terms and it terrifies him.

I feel like I have already given up so much of my life. Freedom, dignity, health (what little I had), mobility, independence, ability to help others, ability to REALLY be a mother and a wife... I could go on and on. I can hardly leave the house. I can't drive, may never again. Can hardly sit in my wheelchair for more than an hour without having to lie down. My quality of life has drastically changed. I TRY to keep a positive attitude but he makes it hard. He has me dead and buried it seems. I have lost so much, and I've lost the marriage that made me so happy. Now it is total caretaker/patient mode. He is going to counseling because he is really at the end of his sanity between losing his job, his mom with dementia and his wife who used to do EVERYTHING in spite of my issues who can now do basically NOTHING. Well, without an episode. I get that he is going through a LOT. But so am I. How can I make him understand, or can I, that he has to let me manage this myself and not obsess so much????? Any advice for me? For HIM? I know his position isn't easy either. Lots of pressure and he's starting to buckle. How can we get through this with our marriage intact? I feel that we are both at such a high stress level and looking at the world from such different perspectives right now. Health worries, time worries, elder parent worries, kid worries, financial worries, you name it. But I feel like it takes every ounce of energy I have to get myself through the day, to try to heal, try to keep strong and keep faith, and try to be the best debilitated mom I can be... everything I do is a struggle and a fight. I can't fight my own battle and fight him too. I just need his support, not his fears and judgements. But I don't think he has the support to give. So that is where we are now and it is not a good place to be.

Thanks for reading if you made it this far.... Jen

HI Everyone!

I think I have suffered from my Immune Deficiency Disorder and my Autonomic Dysfunction/POTS/Whatever you want to call it, my whole life, it was not diagnosed technically until this last August (diagnosed with POTS via TTT at local hospital) and at Mayo with Immune System Disorder (still undefined), EDS and Severe Autonomic Dysfunction just in December.

I've always had symptoms of these disorders as long as I can remember. Symptoms have waxed and waned but never with the severity I am having now. Back in April this "flare" I guess we could call it began. Since then, I have NO appetite. It has just gotten progressively worse and I just have to force anything down just to get the bare minimum calories I need. I basically survive on Ensure and Gatorade and pudding once in a while. I have a very difficult time eating any "real" food because of swallowing issues and really dry mouth. I tried to eat a breadstick the other day and gagged and couldn't even swallow it it. Not to mention, I am just NEVER hungry. I could honestly go a week without eating, and be perfectly fine. This is a constant battle because I KNOW I need to eat but if I take a bite or two of any real food, I am full and can't eat another bite. I have had this happen a few times in my life but never for this long. I have lost 30 pounds in the last couple of months and I know I don't have much more to lose. Technically I am still okay in the weight dept. I think (I am 5'3 and 109 pounds which sounds pretty normal and not "underweight- but I usually weigh in the 125-135 range which may seem a little high for my height but I am very large chested and seem to look better in that range in my opinion). At the weight I am now, my eyes are sunken in, ribs show, hip bones stick out.. I am still "okay" but doctors are constantly complaining about my weight loss.

How many of you just have NO appetite and does anyone have this issue like me where it seems to me a new chronic symptom that isn't going to change? This has been 9 months now and it has only gotten worse, not better. I am thirsty, and get plenty of fluids by the way... but food- especially anything solid is a whole other story. I am interested to hear your stories and how you get the calories you need.

Thanks! JEN

Thank you everyone for your support. I WISH I would have researched the IVIG a little more before I went through with it. I guess I was so sick at the time, and at the hospital alone mostly, I just wasn't myself. I was told all of the initial side effects were normal and from what I read, it seemed to be normal. It wasn't until my last infusion that I experienced the worst reaction, which was getting close to anaphylaxis according to the nurse and I believe they discontinued right then. As soon as I stood up I fainted flat on the floor so I am not very clear on all the details.

I am still bedridden with frequent syncope. If anything, it has gotten worse. My BP numbers are lower than ever. I do have a wheelchair and I can sit for a while before experiencing symptoms but an hour is my absolute limit. I never have syncope while I am sitting but tachycardia, dizziness, blurred vision, etc. My house is not very wheel chair accessible so I can't use it much to get around. I am still have to crawl or scoot to move around for the most part because of the amount of syncope. I just can't risk another concussion right now. I have a helmet but was advised even with the helmet on it won't prevent a concussion so I still can't risk the syncope from standing. I am ordering one of those rolling walkers with the seat.. That way I can sit on that and get around using my feet to move around different rooms.. and spare my knees. I plan to keep that downstairs in our basement bedroom. I do stand up as often as I can, daily, right next to the bed so I can sit right back down when I feel syncope coming on. I try to get myself upright as much as I can because I know that this will continue to spiral if I don't... but after about 20 or 30 seconds syncope comes. Sometimes I recognize it but most of the time I have no warning at all. I have had syncopal spells since coming home but so far I have been lucky- no major injuries, just the typical bumps and bruises.

Hindsight is 20/20 but I sure wish I would have never considered the IVIG. Now I am feeling miserable ALL the time, not just while I am standing and sitting. Before, at least while I was lying down I felt like a normal person! Plus, with all of these changes in my labs, who knows what kind of damage it did???? I hope it is all just temporary... it seems like every thing I try just fails and I end up worse off than I was before. I am frustrated. I am a mother with SIX children to care for. I am so incapacitated now that it is so hard even get myself upstairs. By the time I crawl up both flights of stairs my HR is over 200 and I am so lightheaded and dizzy that I often will get syncope even when I am on my knees. I do make this effort every day to spend an hour or two up in our living area with the kids but there have been days lately when I haven't been able to do even that. It is almost as if they are getting USED to me being this way. That makes me more sad than anything else. This has become their new normal. A mom who spends all her time in bed, a chair or a wheelchair and can't stand up longer than 30 seconds without going unconscious. They are constantly asking me what do I need, what can I get you, telling me to eat, etc.... I am their mom and I should be taking care of them. NOT the other way around. How many times have we ALL said this???? I WANT MY LIFE BACK! I am afraid it will never happen.

I am sorry. This pity party was not the intent of this post and it won't do me any good and my thoughts are my reality so I need to control them and make them positive. And I have much to be grateful for. I just hope my next set of labs show good news that my blood results are improving and not going the other way. This IVIG is just way more than I bargained for and was NEVER expecting this kind of reaction based on the information I was given. That's what happens when you don't do your own research! Lesson learned!

Jen

As my other thread stated, my Mayo neurologist said I had to stop my IVIG treatment because my side effects were too severe. I was having the IVIG at my home hospital and after my second treatment there they sent me to an allergist who prescribes IVIG and he said he would not give it to me again and basically due to concerns for my life they wouldn't give me any more treatments. My last treatment was pretty bad- very elevated BP- can't remember exact number but something like 180/130 or something crazy for me who is very hypotensive. A horrible headache, like one I have NEVER had and I get migraines and headaches almost daily (I have post concussive disorder from 6 concussions). Serious breathing problems, facial flushing like I had a sunburn and my legs turned bright red and hot and swollen. Then, halfway through the rash and hives started. Horrible cold sores all over my mouth and onto to face. Lovely. So my Mayo doctor agreed.

I thought I was just having an allergic reaction, turns out according to my Mayo doctor after ordering labs and going over them that I was seriously rejecting the "drug". My Ferritin level which was always low in the past (8-12) was up to 83 (the week before it was 70). I thought that was the ONE good thing that came of it is that my iron stores went up. Apparently, that's not the case. A rapid rise in Ferritin indicates that the body is rejecting the treatment. The rest of my blood tests were not all that encouraging either. Hemoglobin went from 13.2 to below 9. Hematrocit went from 34 to 25. Red blood cells had dropped quite a bit (sorry, don't have the lab in front of me so I don't remember exact counts of everything). WBC count is elevated- bad thing about that is that I don't get fevers. Normal temp is 96.8 to 97.1. I had acute appendicities in which they operated and my appendix was 80% to rupture and my temp. before surgery was 97.0. last year. My sodium and potassium were both VERY low. Don't get this because I do nothing but drink water and gatorade (with SALT in both) ALL day. Kidney function numbers had changed too but I don't think they were that bad. But I have had a problem with urinary retention lately so I wonder if that is related to the kidneys and the sodium and potassium. There were other abnormal labs he mentioned but I can't remember them off the top of my head. I have to have labs every 2 days now for the week or more for repeat labs to hopefully see things normalize. I guess it is pretty rare for IVIG (according to my Mayo doc) to cause any problems, it is pretty benign for most people. Not saying people don't get side effects and it usually only works about 50% of the time for people like us. But to cause problems like this is unusual.

SOOOO... now I guess I have to wait until all of this IVIG is out of my system before I can move forward with any other treatment. He told me 8 weeks maybe. And I might experience all of those side effects during that time. Hopefully to a lesser and lesser degree. Something to look forward to I guess Has anyone else experienced rejection of IVIG? If IVIG didn't work, did they try something else and what was it? He mentioned other immune therapy but isn't sure that will be the way to go with what has happened with this. Whatever was in that IVIG my body just didn't want to play nice AT ALL. So advice???? I know I have to wait this out but I am feeling pretty miserable in combination with my normal P.O.T.S/Autonomic Neuropathy whatever in the heck it is that makes me faint several times a day. My BP has been so low... when I woke up today it was 65/52, lying down. I sit up to take it and it didn't even register on my monitor so I didn't even bother standing. Nothing has gotten any better, if anything I am worse... 12 days at Mayo and weeks at different hospitals have given me nothing but more questions. Thank you!!