Received My Diagnosis

[all4family]

Hi Everyone,

I just wanted to let anyone who was interested know that I got the phone call this morning, that I had Orthastatic Intolerance. I am the one who posted the question about the Autoimmune disease. The blood test was the ACHR.neurol.gangl.AB. And it is the thing that led them to test me for dysautonomia. I knew for the past 5 years that what I was experiencing was not symptoms of anxiety. I had quite a hard time with my local Drs, ( stories to write a scarey movie on!) and got to the point I wouldn't seek medical help even when I passed out. (not that you have a choice when your out!) So thank you guys for the support and help with my questions...if anybody has any advice please offer, as having a "real" problem verses an "all in my head problem learn to calm down or ignore it",is all new to me. Oh...my doctor wants to try other natural things before the medication due to severe medication reactions. But said if they don't help we can try pyridostigmine / mestinon. But I feel better (emotionally anyways) just knowing that I am finally "allowed" to be sick. For 5 years I have had to try and hide my symptoms the best I could, because no matter what they were I was told it was in my head. I passed a kidney stone, and still refused to go to my local Dr. And let me tell you that hurt! Anyways thanks for listening.

Suzy

[janiedelite]

I'm an RN, and it makes me so sad to read that you were ignored and mistreated because you were sick. I can understand how getting a diagnosis makes you feel empowered, that you now have a label that finally gives you validation when you were doubted for so long. My mom had a rare kind of cancer called carcinoid syndrome for 7 years and was told that she was depressed, hormonal, in early menopause, etc. before an endocrinologist took her seriously. When they finally did surgery, she had metastases because she had to wait so long. I ignored my orthostatic intolerance symptoms for a couple years because they didn't make sense to me and because all my tests were normal, except for that darned tachycardia! When my symptoms became so severe that they couldn't be ignored anymore, my wonderful primary care doctor actually took me seriously. She didn't know what was causing my problems so I've had over 30 doctors visits with specialists since 12/07 trying to figure this out. I finally saw a neurologist in November who is sending me to Mayo next week. In the past year I've left the ER in hysterical tears, been told I must have erred when taking my BP/pulse (even when the office nurse takes it), that I don't have any neurological problems (the first neurologist told me), that I must be putting my feet in ice water (to cause the chilblains/raynauds), and that I'm not really THAT sick. When I saw my rheumatologist last month, he couldn't even believe that I was accepted by Mayo because they only accept REALLY sick people! I doubt I will go back to him.

It's so sad that some doctors can't see past their own egos and ignorance, but I sure appreciate the ones that do. I hope that you can find a treatment regimen that helps your symptoms. My prayer is that soon there will be a treatment for the disease and not just the symptoms. Thank you for sharing and for persevering!

[all4family]

Thank you so much for your kind words. They brought me to tears. Were they able to help your mother at all? I am so sorry about that. I understand what you are saying about leaving ER in tears. The reason I quit going to mine (there is only one in my town) was because being a small town the first 3 or 4 visits they had peged me as anxious. I did ask if it could be anxiety. Only because I didn't really want it to be my heart. The drugs they gave me made me EXTREMLY sick. I couldn't even stand right. After being threatened to keep taking them (saying they would get a court order even though my only crime was frequent trips to the ER) I kept taking them. Then they tried to get me to stop coming, and once locked me in a solitary room not even able to go to the bathroom. Even though I wasn't a threat to myself or anyone else. I didn't even voluntarilly go in. Someone found me in a chair trying to get better before I finished walking home, and called for help. I was coperating with everything everyone asked me to do, and was never even a difficult patient. I would beg for rare testing, as at this point my illness was so extreme I couldn't keep any food down. I would vomit sometimes 50 times in a day. I had lost over 120 pounds, in less than 8 months. My urine was brown. I had a nurse tell me they would take my kids from me if I didn't "straighten" out. It was at this point that I decided I would rather sit at home and die with no help than to go through this anymore.

It wasn't untill I had a second EXTREME episode that lasted for months on end that I sought help from the Mayo clinic. They renewed my faith in the medical profession. I am still nervouse, and never fully admitt how sick I am. But it is only out of fear from my past. Even when they couldn't find much on the tests they kept looking. I had a lot of little things show on tests, and a couple big things. But this explains all my stuff I think. So I am happy to have gone to the Mayo clinic, and hope you will be to. I am also returning to mayo to see an allergist on Monday. Which Mayo are you going to? I go to the one in AZ. I am glad to hear you are going there.

Oh. I also get what you are saying about BP being told you took it wrong. I was real bad one day, and couldn't get up very well. thinking my bp was high, (because I figured that was my problem) I took mine. It was 76/35. I took it like 3 times, and it was about the same each time. I was told it was an error with my machine. That if it was that low I would be dead! (that was comforting) And when it was taken in the hospital and was low they repeated untill it came up to normal. and that was what they wrote down. (that helped.)

Yes the feeling of empowerment over this "thing" that has robbed me of 5 years of my life and validation is what it is that makes me happy to have the diagnoses. You gave me the exact words to how I feel right now. Thank you. The Dr probably thought I sounded nuts on the phone, because I sounded so happy. But really after 5 years of suffering in silence it is a relief to get a diagnoses. An explanation of what makes me feel the way I do. A way to move on with my life, instead of waiting all the time for this "thing" to pass. Thank you so much for your encouragement. It really meant a lot to me today.

Oh, and as for the person who said for people that are really sick. I am sorry he said that to you. He wouldn't if he had to walk even one day in your shoes.

Suzy

[hollie]

...if anybody has any advice please offer, as having a "real" problem verses an "all in my head problem learn to calm down or ignore it",is all new to me. Suzy

Hi Suzy,

I'm sorry to hear you have had such a rough time. That seems to be a theme around here! My advice... Take one day at a time (sometimes even one hour at a time). Keep coming to this site too. I've only been here for about a year, but it makes me feel better when I need a pick-me-up, information, some advice and even a shoulder to cry on. Find a dr that you like (and trust). If you get a bad vibe... find a better one - don't settle. This is your life and your health. If you don't fight for it, who will? You know how you feel, you know what's real. Rest when you need to, laugh when you need to, cry when you need to! This is not an easy journey, but you'll get through. (you know... the funny thing... I'm havng a rough day today and came here for a pick-me-up. I'm reading my own words to and now I have to take my own advice!)

Don't be afraid to ask or share here... We're all on the same boat!

[janiedelite]

Suzy,

I'm glad I was able to brighten your day. This forum has helped me so many times! My mom is turning 60 tomorrow! Yay! She's had 2 surgeries over the past 10 years to remove tumors, but we are thankful that her tumors are very slow-growing. She is too thin, and doesn't have a lot of energy, and is on lots of meds, but we appreciate every day we have with each other. We try to not look at her diagnosis as being time taken away from us. She sees every day as an opportunity to bless others. I'm blessed to know her. We fly once a year to New Orleans where there is a doctor who has fathered much of the research on carcinoid syndrome so that he can review her scans and meds and let her know of upcoming treatment possibilities.

I'm going to the Mayo in Rochester. I'll be seen at the autonomic clinic but I'm not sure which doc will be managing me. It will just be so nice to go to a doctor that I don't have to explain my illness to!!!

For me, having a diagnosis was like finally having permission to be sick. Instead of hiding and ignoring people when I felt my worst, I can let them know how I'm doing and we can work around my illness (like if I need to lay down or use my wheelchair, or wait for a day when I feel better). I still wish I could work, but I don't feel so guilty about it now. I'm sorry you had to wait so long to get a diagnosis.

Feel free to PM me anytime! Janie

[momofsara]

Let me just add Sara's experience with non-believing doctors. It is so very frustrating to KNOW that something is wrong and have the medical profession say--no you dont, nothing shows up on your tests, so it must be in your head. And as her Mother, I could SEE what was happening to her, and I was also insulted that they were in essence telling me that I was crazy too. So we were both feeling insult and anger.

After all, its your body and you know what feels right and what doesnt. Please dont ever feel bad or embarassed to vent here, we are here for you and we understand. Take care and good luck with your treatment. Hang in there and keep us posted, we care......... Susan

[firewatcher]

Suzy,

I am so glad you finally have a diagnosis; it doesn't make dealing with it any easier, but somehow for everyone else at least it makes it more REAL. Not knowing is frustrating and maddening and depressing! For some silly reason, we must always give something a name, otherwise it is an unknown. In some way it does give us permission to be sick. Welcome to our crazy, orthostatic extended family! At least here, we practice love, support and understanding (even if we don't understand why!)

Hope and healing to you!

Jennifer

[dsdmom]

Congrats on the diagnosis. Did you discuss IVIG with your doc at all?

And just as an aside - I, too, have terrible medication sensitivites and am on mestinon. Just wanted to let you know that if you do try it, ask to use the children's formula - it's a liquid and you can dose it exactly as you want it. So instead of cutting a 60mg pill into crumbling fragments you can do as little or as much (or as odd of a dose) as you want. I take 17 mg 3/day. (which is a VERY low dose)

Good luck!

[all4family]

Thank you so much for the support. and the kind advice. I am sorry you are having a rough day, and I hope you take some of that kind advice for yourself too. The rest when you need to, laugh when you need to, cry when you need to, was much needed advice. I will definatly be trying to put that into effect. I wish I could find a local Dr I feel comfortable with. The Drs where I live all seem to know each other, and my name became well known around here. I only have a few hours to drive to the mayo clinic though. The only promblem is for emergencys. But I won't worry about that till I need it. Thanks for the encouragement, and the boat to share. I've thought I was on a raft of craziness alone in the middle of the pacific for 5 years. Feels good to have some understanding company, instead of hungry sharks!

Suzy

[all4family]

I'm trying to learn how to do the quotes without just hitting reply, but haven't quite figured it out yet. So sorry for repeating the whole thing.

Hi again Janie,

I am so glad to hear that about your mom. Happy Birthday to her! What a wonderful story of courage! It sounds like your family has grown from that experience, and I would bet that you have great understanding of her due to what you have been through. The hardest things in life can make us appreciate the smallest things more.

I am so glad you are going to mayo. I would have never gotten a diagnoses if I hadn't gone to them. Do you have to travel very far to go there? That is so funny about explaining the illness. I haven't had that experience yet, but do have a local cardiologist due to a aortic valve leak. I can just imagine what he will say.

I really get what you say about the permission thing. Just since I learned about it my family has tried to do things to make things easier for me. My mom even finally talked me into useing one of those carts in the store. I usually have to go in get stuff quick, and am so bad by the time I get to the register I can barely check out, and end up making excuses like oh gosh I'm so tired I've been running all day.(even though I just got out of bed, and was going to get back in when I got home.) I spent a whole hour in the store when I used the cart! I think that my family would do anything to help me if they only knew what to do, and now they can. I didn't know how to help me before. I just knew I couldn't do things like I had done before, so I gave up on having a normal life. Now I know it might not be normal, but it can be better.

I'm glad that I'm not the only one who needs to lay down. I have laid on the ground, on benches, in some of the weirdest places and never understood why I needed to lay down.(I once went in a public bathroom when out in public and sat on the toilet and laid my head back for as long as I thought I could get away with it untill someone came looking for me) Yet I just knew I couldn't do one more thing without laying down. I even learned to clean my house in spurts. I'd do a little. Go lay down. Go back do a little more. Go lay down. And this was only when I started getting better. I was happy to be able to do that.

Thanks for the offer of the PM. Haven't learned how yet, but when I do you may take the offer back! lol. And please. The same goes for you. PM me any time. Thanks for the support today.

Suzy

Edited January 26, 2009 by Rachel
Quotes removed. You can use the "add reply" button at the very bottom of the page to avoid quoting the previous post.

[all4family]

Let me just add Sara's experience with non-believing doctors. It is so very frustrating to KNOW that something is wrong and have the medical profession say--no you dont, nothing shows up on your tests, so it must be in your head. And as her Mother, I could SEE what was happening to her, and I was also insulted that they were in essence telling me that I was crazy too. So we were both feeling insult and anger.

After all, its your body and you know what feels right and what doesnt. Please dont ever feel bad or embarassed to vent here, we are here for you and we understand. Take care and good luck with your treatment. Hang in there and keep us posted, we care......... Susan

I am so sorry to hear that happened to you. As a mother you want to do everything you can for your child, and when you can't get help in taking care of that it is devistating in itself. But that just adds insult to injury when you are told you don't know your own child. No one knows your child better than you, and the doctors should listen if you know there is something wrong with your child. What are they going to say? Your anxiety is making your child sick?!? How frusterating. Thank you for sharing that, and I hope things are going better for your daughter now. Thanks for helping me feel I can vent. I have a five year backed up ventilation system! What a mess!

Suzy

[all4family]

Hi Jennifer,

Thank you. You are right. It doesn't make dealing with it easier. I somehow thought that I would get the diagnosis, and feel better. But I had a kinda bad day today. (But I smiled because I at least knew why.) The whole real word thing is so true. It's other people we want to believe it's real. We've known all along! Thank you for the welcome to the crazy, orthostatic extended family. (finally somewhere I fit in!) I look forward to sharing the love support and misunderstood understanding! lol I just love the humorous people of the world!

Hope and healing to you too!

Suzy

[all4family]

Hi dsdmom,

Thank you, I didn't really ask him about the IVIG as the conversation was on the phone, and I was just so stunned I really couldn't think. He mentioned some drugs, but a large part of my illness was made SEVERE with different drugs I was tried on. And it was very evident from the way things took place that the drugs made it very bad. I became oversensitized to everything. even fragrance, and some vitamins. I get all over body hives a lot. And don't know why. I am going to see an allergist on monday to see what they can tell if anything. Thank you for the info on the mestinon. That is a drug he mentioned if the other stuff doesn't help. I am willing to try again, but last time I took something (it was an antibiotic) I had a reaction, took benadryle, gave me high blood pressure, 186/106, took an asprin, thought I was having a heart attack, had tests done with dyes and "more drugs". found nothing and spent the next 6-7 months in severe illness untill I finally started pulling out. So even though I am willing (just barely) I am happy that this doctor really heard my story, and understands, because for the first time since I've been sick it is the doctor wanting to try "other things first". I once told my mom I would eat poo if it would make me feel better. I proved it when I found out I have secondary hyperparathyroidism, and decided to get vitamin d from unflavored cod liver oil!

I will keep in mind about the liquid if he does decide to go the drug route with me. And when I get more information on the IVIG I will let you know. Thanks a lot.

Suzy

[carinara]

I am so glad that you finally got a diagnosis.

I know exactly how you feel because the same thing happened to me. I was sick for more than 10 years before i got diagnosed in 2007. In those 10 years nobody could help me, doctors didn't believe me. And when I showed them how my HR jumps up as soon as I stood up they laughed at me and told me that there was nothing wrong with me.

When I said that I can't stand longer then a few minutes before I get really sick (for example whilst waiting in line) I got told that I have a panic disorder and that I didntt try hard enough.

A Therapist told me that I should put myself into as many situations as I can that normally make me feel sick (he thought I had a panic disorder). All my symptoms he said are due to anxiety.

I had a job and was a single mum and I pushed myself through all these silly suggestions. I went to the sauna, I stood in lines

and tried to do everything that healthy people do. But I felt so sick all the time and my self trust went away. When I finally got diagnosed, it all changed. I now know what I am dealing with and that made a whole world of difference to me. It feels like a great rock fell off my shoulders! I am so much more confident in everything I do now, because I KNOW that there is

really something wrong with me, and if I feel that I can't do something because it would make me sick, I won't do it. I don't stand in lines anymore and I don't go to saunas anymore and I dont feel bad about it anymore.

I hope that your diagnosis will also change your life, like it has mine.

[all4family]

Hi Carinara,

Thank you so much. I am so sorry it took ten years to find out what was wrong with you. I know what you are saying about the self trust. After being told for so long that I was the one causing my problems with my thinking I started to really think I would never be normal. Because as hard as I tried to get better by changing my thinking it never changed. The only thing that seemed to help was laying in bed. Then I got labled as lazy. I fought to not look "lazy". And really turned with anger on myself and my body. I was also told to go out and do things even if you feel bad. And I did. Going to the store during my vomitting period was awful because I had to carry paper towels or cups because I would puke all through the store. And usually several times. And once when a friends dog I was watching got out and wouldn't come to me I had to go running through the streets trying to catch it. My counselor at the time said see and you didn't have a heart attack and die. No but I didn't come out of my room for 2 months afterwards either.

Being a single mother already pushes your body and mind past it's limits. And to take on the added burden of facing your "fears" that are not even fears trying to do what healthy people do. It is terrible what a mis-diagnoses such as this can do to a persons life. All because some doctor can't figure it out. instead of saying I don't know what it is. Maybe there is somewhere else we can send you to find out. It's easier for them to blame the patient. I know that all doctors aren't like this, but I sure wish I had found one that wasn't when I first became sick. I know a lot of the things that I did in the name of "getting better" made things much worse..

I so glad that the diagnoses changed your life for the better. It's funny. I've had people tell me you don't want a diagnoses. It's a label on you. But it was ok to label me as "crazy"! I thought I was strange for being happy about the diagnoses. But at least its not the things I thought it was before I knew. Like heart disease, and lung cancer. so I am glad to hear that the diagnoses changed your life. I know it will change mine too. It already has I am meeting a whole lot of wonderful caring understanding people who have been through a lot in life, and come out the other end better stronger people. Thanks for the encouragement, and sharing.

Suzy

[ptalaura]

I know what is like to not be heard and not be believed with your symptoms. I have changed all my local doctors to out of town and had to go out of state and 18 months of testing( and still feeling like you aren't being listened to or believed "its in your head") before being referred to a neurologist for POTS. I am so thankful for a diagnosis and validation after 20 months. Although a November hospital stay, my husband told them I was recently diagnosed with POTS, however, I guess, they thought I made it up or something, nothing on my records about it and the records indicated this is not what I had. December hospital stay, same hospitalist, this time we were armed with a paper from my doctor validating all diagnosis which I carry at all times now, I was treated so differently it was amazing. He admitted to my husband(not to me) that he did not know much about this condition; if he had only asked me I probably could of informed him. What is it going to take for doctors to believe you?'; this isn't something you would wish on anybody!

[all4family]

Hi ptalaura,

I am so sorry you had to go so far to get help. It is infuriating that you tell a Dr that you have a diagnoses, and they treat you like you make it up. Like what are you really going to get out of making something like this up?!? UUURRRGGGHHH!!!! I was diagnosed (during my sick "all in my head" period) with a aortic valve insufficency. When I went to the ER for fainting the Dr laughed at me and said "Did you get your results of the echo?" And I said yeah. I have an aortic valve insufficency. And he said "who told you that?" I said YOUR CARDIOLOGY DEPARTMENT! He left the room, and came back a little later and said I don't think that is what is causing your problems! I looked at the report. You aren't experiencing any symptoms from that. I have told my family the only way I am going back into my local hospital is unconcious!

You know also I think what you are doing is a good idea. carrying your paperwork with you. I was tested for porphyria, and although I didn't test positive I learned that if you have that you should wear a medic alert bracelet. Considering the nature of this illness I think that might be a good idea here too. For those times when you can't talk for yourself. And also maybe like some kind of information sheet for Drs. who don't know about the illness. That would be a great way for Drs. to learn. Is there a information sheet on this site that could be used that way? Anybody know?

I think it is nice that you were treated differently. But what is really wrong with our world that you have to prove with a piece of paper that you are worth caring for. In my opinion, it shouldn't matter if your pain and sickness IS all in your head. You are no less a human being with feelings. And your pain and suffering is no less.

It's also amazing to me that a Dr will talk to your husband. But not you. Like your husband knows more about how you feel than you. I asked a doctor for a test that I wanted done. And he said no. wouldn't even discuss it. My husband on the same visit asked him for a arsenic test. (we lived in an area that was high for arsenic in the water) Sure no problem! An arsenic test! How often do you see one of those?!? It was a test that I wanted done, because I thought maybe that was it, but the point was I asked him for a more common test, and he wouldn't do it. It just infuriated me!

Well thank you so much for sharing that story with me. Do you live in a small town? I do, and it sure does make it difficult for medical care. Take care.

Suzy