jenglynn Posted December 30, 2011 Report Posted December 30, 2011 Hi!Last week while I was still inpatient at Mayo in Rochester I received my first 5 days of IVIG treatments. Today was my first of my "weekly" treatment. I have 10 more to go. I haven't noticed any changes yet in my autonomic symptoms but there have been a few changes...First, I have always been iron deficient. Usually my ferritin level is between 8-12 and has consistently been this way for the past several years despite taking 2 iron supplements a day for over the last 3 years. They did a blood test today and my ferritin levels were at 70!!! The last time it was taken was in November and it was 11. Would IVIG raise my ferritin levels that quickly after just 5 doses? Is that a typical reaction to IVIG? Would that happen to everyone or does it indicate a more positive response, meaning would that predict any future success with autonomic system?Next, I have broken out in a horrible case of cold sores... both of my lips all the way to my nose are covered in blisters. I get cold sores occassionally but never this severe? Could this virus outbreak have anything to do with the IVIG?Just wondering if someone with more experience or info about IVIG might be able to offer some insight for me. Thank you.Jen Quote
arizona girl Posted December 30, 2011 Report Posted December 30, 2011 Wow, thats interesting. I do know that there is an autoimmune condition that effects the blood, that they can use IVIG to treat. IVIG can be used to treat a lot of things. Have you talked to the doctors about the change and your chronic low ferritin, a form of anemia which can also cause high heart rate I think. Also, if your gi tract has nerve damage, it could have effected your ability to absorb the iron. Are you sure they didn't give you an iron infusion. I had to have 3 when I got anemic and it corrected it. Did anyone ever check to see if you were losing blood some where in your body the last few years?The sores I don't think that is a common side effect but it was listed under one of the IVIG product lists of side effects. You might want to ask about an antiviral for that, I think they even have oral mouth washes they can give you to help with the pain. What brand of IVIG are they giving you?Do you get a lot of infections of any kind, or colds, or feel like you are fighting something off, or feel like you have a fever, but don't really have one or a only have a low one when you check? If you do you might want to ask them if they checked you for an immune defiecency before starting IVIG. They may have checked your total quantitative immunoglobulins, if they were low then you might have that. It can be found together with these autoimmune conditions.BTW, you can ask the nurse to give you copies of all the labs they have done so far. Read your medical records yourself, the info is empowering. Quote
jenglynn Posted December 30, 2011 Author Report Posted December 30, 2011 All I know is that I was diagnosed with an auto immune deficieny disorder... but it wasn't defined clearly because the test that states which one it is has not come back yet. I guess, according to my neuro at Mayo, there is about a 50/50 chance of finding out the true cause. The other 50% of the time you never know the true nature. I tested positive for a protein that indicates an auto immune disorder. I think that I definitely had issues absorbing vitamins because I have been lacking in many for so long- no matter how many supplements I would take.I guess I am just wondering if the rising of the ferritin level could indicate a positive prospect for improving my autonomic symptoms or if the two are just totally unconnected... I do have a lot of reports but not all of the labs. I will have to request them. Thanks for your response Quote
HopeSprings Posted December 30, 2011 Report Posted December 30, 2011 I tested positive for a protein that indicates an auto immune disorder.Jen- so sorry you're still having a hard time. The cold sore outbreak makes me think your immune system is down - this happens to me when I get sick. But IVIG is supposed to boost it right?..so I'm not sure. Would you mind sharing which protein you tested positive for? I hope they will be able to help you. Quote
rubytuesday Posted December 30, 2011 Report Posted December 30, 2011 I am in process of being set up for IV Ig infusions. Mine is for immunodeficiency with other autoimmune tests still out. I have terrible problem with sores on mouth/lips. I asked my pharmacist and he got a Rx from my PCP for Denavir topical application to help speed healing. Sending good wishes your way. Quote
anaphylaxing Posted December 30, 2011 Report Posted December 30, 2011 A thought on the cold sores. Could be from the prednisone they gave you with the IVIg....if they did give you prednisone? I get nasty outbreaks whenever on steroids and need to take daily valacyclovir. Quote
juliegee Posted December 30, 2011 Report Posted December 30, 2011 Great news about your increased iron, Jen- YAY!!!! I bet the cold sores are just a temporary reaction. Hope so. I have a general question for those DXed with the autoimmune form of POTS- are your immunoglobulins also low? In other words, are you also immunodeficient? Thanks-Julie Quote
Katybug Posted December 31, 2011 Report Posted December 31, 2011 jenglynn,I don't know anything about the treatment but wanted to say WOOOHOOO on increasing your iron levels...no matter how it happened. It's got to be a good sign! I also wanted to ask if you have had any word on your organ function. One of your posts just before you started the IVIg said that it looked like you were having some organ function issues and I am just hoping that that issue has been stopped (and preferably reversed)!I really am pulling for you!Katie Quote
jenglynn Posted December 31, 2011 Author Report Posted December 31, 2011 Thanks for the replies!!!My organs seem to be getting back in order. Bladder control is better... still leaking but haven't had a full loss of bladder control in over a week. My thryoid was almost at a zero as far as being hyperthyroid... but now it is .09. Still hyper I guess but better. I haven't had any real changes with my orthostatic hypotension and tachycardia. This is what my discharge report said: "Autonomic reflex screen was abnormal, with neurogenic orthostatic hypotension and adrenergic autonomic failure, suggestive of an autonomic neuropathy, perhaps autoimmune. A serum protein electrophoresis (SPEP) showed polyclonal hypergammaglobulinemia. A urine protein electrophoresis was pending at the time of discharge"I have no clue what this means. I have tried to research it but I am by no means as savvy as most of you on this forum so if you can add anything to what that means, I would really appreciate it. It sounds like they aren't SURE it is autoimmune because they use the word probable but when I was in the hospital they kept indicated that I have an autoimmune disorder and it is listed on my diagnosis list. Not sure why they would list it when it is "probable?" So, if I have an autoimmune form of autonomic failure or whatever.... does that mean that it will go away forever if the IVIG is effective? Or are they separate issues? I got a few different answers on that from the different doctors I spoke to. All the doctors gave me about a 50/50 chance of the IVIG helping but no one ever said that it would take away all of my autonomic problems forever. I guess I am still confused. I wish that I would not have been so sick while I was there because I could hardly ask or respond to questions. My state when I arrived was not good. My standing BP in the ER was so low that it couldn't even be registered and my HR was over 200. (sitting was 45/30 with a HR of 160) I had 4 syncope spells in the ER alone... (one when a poor Xray tech tried to get me to stand for a chest xray and I was so out of it I just did it and 20 seconds later down I went). By the time I woke up, I was on the gurney again so I have no idea if I hit my head or not but I sure had a heck of a headache the next day and a big goose egg.) 90% of the time I was there by myself because we have six kids and my husband was home with them. We live an hour away so for the most part I was on my own. I was so sick that I really don't have a lot of recollection about what went on while I was there. I am making a long list of questions and plan to make a call this week to talk to the head neurologist who treated me to see if I can get some more answers. If any of you can think of important things to ask, please let me know! Quote
jenglynn Posted December 31, 2011 Author Report Posted December 31, 2011 One more question... It does not state ANYWHERE in my Mayo medical records that I have P.O.T.S which is what I had already been diagnosed with before going there... So does the diagnosis that I listed above mean I do not P.O.T.S anymore or is it just another word for it? Thanks! Jen Quote
kclynn Posted December 31, 2011 Report Posted December 31, 2011 Jenglynn, I have been following your story and truly hope you come up with treatments and answers. I can not add anything but I understand how overwhelming it can be. I was wondering if you could call and get an email and write out your questions as you have done here. Much easier to have information written down so you can research and evaluate. When my son went there the nurse was happy to give me her email which she then sent the questions to the Dr. Maybe when you call your husband can be on the phone with you. Blessings to you Quote
sue1234 Posted December 31, 2011 Report Posted December 31, 2011 Strange you mention being diagnosed with neurogenic syncope, and that you have a history of unresolved anemia(until now, apparently!). I had linked an article a while back that was by Dr. Stewart, I believe, that showed that his adolescent patients presenting with neurogenic syncope overwhelmingly were anemic, either outright or by ferritin values. If this would happen to be your case, it sounds promising about getting your anemia resolved, and then knows what might happen?!As far as not responding to iron pills for years, all I know is alot of people with celiac/gluten intolerance have said in their life stories that they were anemic and nobody knew why. They also would try oral supplements, and couldn't ever seem to crawl out of the anemia phase. Once they went gluten-free, their anemia improved easily. So, with their immune system on alert AND their small intestine in attack-mode, they just plain weren't able to absorb the iron. Quote
jangle Posted January 2, 2012 Report Posted January 2, 2012 Would anemia show up on your complete blood count? Quote
janiedelite Posted January 3, 2012 Report Posted January 3, 2012 Yes, a CBC/complete blood count should show your hematocrit and hemoglobin levels Quote
jenglynn Posted January 3, 2012 Author Report Posted January 3, 2012 The frustrating part about this whole thing??? After I got the good news about the massive increase in my ferritin levels... like I said.. with supplements for years never above 8-12 ever. BUT... NOW I am "technically" considered anemic because my hemoglobin has dropped to anemia levels and my hematocrit also dropped as well to well below normal. So even though my iron stores are so much better now I am technically anemic according to my hemoglobin which went from 13.8 to below 10 now. I am just confused.I can't say I notice a difference in autonomic symptoms... HR and BP symptoms still the same. The ONLY thing that has somewhat improved is that I think my syncope is less because one of the things I learned is to start recognizing my early syncope symptoms earlier if I can... I don't always have warning but I did learn that I have early symptoms that are very subtle at times that I never noticed before. So now I am able to get down sooner to either prevent syncope OR be on the ground when it occurs. I am just confused at what to expect by these IVIG treatments. I wish I was one who could sail through them without issue... but I do get quite sick. Migraine headache and the day of the treatment I feel like I have the flu. I can't move at all because my whole body hurts with body aches and chills. The day after I am miserable. Sick... When I sat up the next morning the whole room was spinning and I had no vision, no hearing... low BP and high, high HR. Over 180. This has happened every time after the last four treatments I've had. Even being pre treated but they do not treat me with steroids. Only Benadryl and Tylenol. The spinning, headache and vision and hearing problems go on all day... if I keep my head back against a pillow, reclined, I am okay. But any movement then I am in misery. We even have tried another brand to no success. I also have hives and bumps all over me ever since I began the treatment. I've called my doctor and he said these are all normal side effects and he feels that the small potential benefit is worth the risk and discomfort. So I just keep telling myself... 10 weeks to go Thanks for your support and keep your ideas coming if you have any others.... I have seen a lot of changes in my body but I am not sure how to interpret them. The massive outbreak of cold sores was concerning but they immediately put me on an anti viral drug that helped to prevent them from spreading and that has worked so far. They never spread beyond my lower lips. So I will be on a preventive dose throughout the rest of the treatment.Another kind of unrelated question.... I met with a genetic counselor and I brought up my rather extreme hypermobility and hyperextendable joints (actually, both now listed on my DX list) and the genetic doctor said that I met the criteria for a form of Ehlers Danlos (I have a 13 year old daughter with the same joints and mobility and has already had several syncope spells) but she said that didn't want to "label" me with Ehlers Danlos because it has nothing to do with autonomic dysfunction. She said it was not all that uncommon for women to be hypermobile, have hyper joints, multiple dislocations, and the soft and stretchy skin I have... The only criteria I didn't meet in her mind was that my scars didn't appear typical. There were only a few that had that very thin skin layer but the rest seemed okay. It seems that there are many on this forum who have both and I have SUCH a hard time believing that these symptoms are not connected. My 13 and I are both diagnosed with a vague connective tissue disorder AND hypermobility and we both started having syncope without any reason at the same age. How can this not be related???? Quote
Katybug Posted January 3, 2012 Report Posted January 3, 2012 jennglynn,It is my understanding that EDS can make your vasculature weak/flacid which can contribute to the orthostatic problems. Some of the folks with EDS might have a better understanding and be able to explain if they can do anything about it.Katie Quote
anaphylaxing Posted January 4, 2012 Report Posted January 4, 2012 I also have joint hypermobility and POTS. It means our blood vessels are looser and don't circulate blood as well and it can tend to pool in our abdomen and legs. I just thought my double jointed elbows were cool my whole life now I'm starting to despise them for that they signify. There is a yahoo group of us with CTD like EDS, POTS and some with mast cell disease if you're interested to look through the posts or joinhttp://uk.groups.yahoo.com/group/theelephantproject/I always had blotchy purple legs growing up but now have full fledged POTS but I also have ? MCAD Quote
Chaos Posted January 4, 2012 Report Posted January 4, 2012 Could be the genetic counselor doesn't know about the relationship between EDS and autonomic dysfunction. It has been shown in MANY studies to be related. There are also several books on hypermobility syndromes and they all devote a fair amount of space to the dysautonomia that occurs with this diagnosis.When I saw a geneticist locally, I already had the POTS/NMH diagnosis. When she came in to see me her comment was "I've seen lots of people with EDS over the years, but I've never seen one with dysautonomia." As we talked for the next two hours however she kept mentioning "symptoms" that her EDS patients have that are dysautonomic as well. I suspect she's now seeing a LOT more EDS patients with dysautonomia since she has had the relationship brought to her attention. Quote
jenglynn Posted January 4, 2012 Author Report Posted January 4, 2012 I actually thought (silly me) that there was a pretty clear connection acknowledged by doctors about the occurance of POTS patients and hypermobility/ EDS or whatever it is. But when I brought it up to doctor after doctor (and this is at Mayo in Rochester where I thought they would have an understanding) I was completely dismissed. They diagnosed me with hypermobility and hyperextendable joints but would not pursue the EDS dx. The genetic counselor said in her report "The patient presents many signs of EDS but I caution again labeling a patient with her severe and chronic autonomic issues with EDS and seriously advise other avenues be pursued to determine the cause of her illnesses." So apparently the doctors at Mayo do not believe in that connection.The genetic counselor really did not have anything other to add besides I have an autoimmune disorder due to family history butat this point it has not been pin pointed as to which one it is. Guess it is just a waiting game at this time... Quote
rubytuesday Posted January 10, 2012 Report Posted January 10, 2012 I have EDS III and am a bleeder (Delta Granule Storage Pool Def) and have PI, POTS/OH/autonomic nervous system failing. It was about 20 years ago when things started really going south and got diagnosis of fibromyalgia informally around 1991 and formally in 1998. The hemorrhaging was 'grouped' under Von Willebrands until test was just recently developed. The EDS dx didn't come until 2005. It has been a long journey. While I've always been 'sickly', it was not til seeking services of Infectious Disease doctor for osteomyelitis (and continued infections with further researching into my immune system that the PI was diagnosed). The neurocardiogenic syncope started 3 years ago and POTS/OH diagnoses came in 2011. It has been a very long journey and still not done (I've appointment that have put off too long to see my GI about what I believe to be gastroparesis). I'd always believed too that things were related. Certain things are hereditary but being one of the oldest of 7 'kids' and coming from family that is insurance poor, some of my sibblings (and son) show an awful lot of similarities healthwise as myself. So I've been the educator for the family. Quote
jenglynn Posted January 10, 2012 Author Report Posted January 10, 2012 Thank you for all of your input, about IVIG and EDS. The main reason I am so concerned is my 13 year old, Savannah. She is SOOO much like me. She displays many of the autoimmune traits I had at that age as well (would catch any weird thing that came along, inability to have a fever or IF she gets one it is always very low.. normal body temp is below 97.5 at least (never has had one over 99), very hypermobile and hyperextendable joints, exercise intolerance, gets overheated easily, legs and feet upon standing or sitting become purple/red, dusky and mottled, HUGE pupils that stay huge all the time with one bigger than the other just like mine, and has already had 4 syncopal spells that can't be explained by weather, needles, or anything) It just seems like too much of a coincidence that she has so many of the symptoms I have and have had most of my life. But even the doctors at Mayo did not believe there was any reason to put her through any testing. I will watch her very closely and at least when I recognize the first serious symptom or her next syncopal spell I will know what to do and hopefully will not have to go through what most of us have had to endure to get a diagnosis. I pray that she never develops this and it IS a coincidence and she can live a normal and healthy life.. I wouldn't wish this on a soul, let alone my precious daughter.I guess I was just annoyed that they totally dismissed me trying to connect the EDS with POTS. I mention that the hypermobility can lead to "hypermobile" type of veins where they veins don't constrict as they should. The genetic counselor and the other doctors looked at me like I was crazy and one actually mentioned that I was "obsessed" and I needed to let it go because there were no easy answers to my situation. I just kept repeating how worried I was about my daughter and the same doctor told me that I had enough to worry about with myself and my daughter was not the patient. I realized I wasn't going to get anywhere so I decided I would continue to research and made notes of every single comment they made to me about it. Once they finally examined my joints (after 7 days!!!!!!) they finally made a note on my charts about the hypermobility/hyperextendable joints... the doctor actually dislocated my right knee as he was testing the stability. HELLO? Believe me now? Then I had to do all the tests which of course I could do all of them. All he would say is "Yeah, you are flexible but it has nothing to do with your autonomic problems." OKAY... whatever. But I so wanted to prove them wrong but I let it go. It was not getting me anywhere and I realized that it was starting to cause an issue with the doctors so I recognized that the immediate goal of treating me was getting compromised. But if (and I pray it is an "IF") she begins to show more signs and symptoms then I will do whatever I have to do to get her help as soon as I can possibly get her there.Jen Quote
janiedelite Posted January 10, 2012 Report Posted January 10, 2012 There are doctors out there who understand the correlation between hypermobile EDS and dysautnomia/POTS. My cardiologist trained under Dr. Grubb and checks all of her new patients for hypermobility. Although, I hope that your daughter never has the need to try to find a doctor. Quote
anaphylaxing Posted January 10, 2012 Report Posted January 10, 2012 I ran into the same issues at the same hospital. So sorry to hear you had those troubles too. Quote
jenglynn Posted January 11, 2012 Author Report Posted January 11, 2012 I wonder WHY there is such a difference in the doctors' understanding then? I was actually quite surprised at Mayo when they looked and treated me like I was crazy when I brought up my hypermobility. It was like "Yeah, what's your point????" I was taken aback and started babbling about the relation and was bluntly told there is NO connection. Like I said, I kept bringing it up (I was persistent) but it got to be contentious so I had to let it go. But I was thinking... aren't there journal articles or SOMETHING that has documented this? And this is Mayo! I would think they would know as they kept telling me repeatedly how they are the top in the world for autonomic dysfunction. Quite frustrating. Quote
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