What If It's Not Pots???

[Beccapooh]

I just came home from my second TTT and the results were similar to the first one. My HR increased by 27 BPM this time..............now I'm three beats short instead of just two!!! ARGH!

Basically, I'm being told that that doesn't qualify for POTS. Okay, fine. Then what's wrong with me??? Does anyone have any experience with Shy-Drager Syndrome? It had been suggested to me pretty early on in my quest for a DX, but then it was dismissed because 1) I'm too young and 2) I'm female. Now, correct me if I'm wrong but, is it IMPOSSIBLE for me to have Shy-Drager and be a 34 year old woman??

It also seems funny (ironic) to me that all these different syndromes, diseases, whatever, have the same treatment (essentially). I've looked up several different "types" of dysautonomia and they're basically treated the same way. I have most of the symptoms of most of these conditions; as most the symptoms are the same!!! I think I'm doubly frustrated because so many of them "don't have a set test to DX". ARGH!!! I still haven't had the 24 hour urine done and that seems to be a pretty big one for most of these conditions.

I really wish that I could just make my way to Ohio and see Dr. Grubb, seriously. I've found a wonderful doctor here, but she's really just learning (from Dr. Grubb) about POTS (specifically) and doesn't really know much about any other sort of Dysautonomia. My Cardio's PA (who was the one who did the test....not even my "real" doctor showed up.... ) said that I needed to follow up with my Neurologist AGAIN!!! I've been seeing a Neurologist off and on for over ten years now. Now, if the Neuro's were going to DX me, wouldn't they have already done it???? I just can't imagine feeling this way forever!!!

Also, my symptoms seem to be progressing, ie. the voice weakness, inability to swallow properly, water shooting out of my nose, super chronic fatigue. It scares me to read things like about Shy-Drager that state that the prognosis isn't so good long term. I've already started having some real breathing issues and I seem to get Pneumonia all the time. What if? What if....I never get tested for the "right" disease/syndrome and I just end up dying before they ever figure out what's wrong with me??? I'm sorry, to be so dramatic, but, I really am getting scared that the medical community just doesn't know what's wrong with me and never will. Therefore, never be able to treat me and thus..............it'll kill me in the end!!!!

Please, please, please I need to know that I'm not alone here. I need to know that I can move forward and get help. I've spent so much money on tests and procedures and med's, etc and I'm still sick. My poor husband is about to divorce me because he's starting to lose faith in me, I know it. He says that that's not true, but I can feel it, you know? ****, I'm starting to lose faith in myself, too. And that was the last thing I had left to lose..............

(HEAVY SIGH)

Rebecca

[MomtoGiuliana]

You poor thing--I am so frustrated for you.

I know POTS can be diagnosed even if the TTT fails to produce a change as dramatic as 30 bpm.

Were you on any meds at the time of the test? Were you well-hydrated? (sometimes the bpm change will only occur if you are slightly dehydrated, for example.) POTS is typically so changeable from day to day, that one test is not going to be 100% accurate all the time for all POTS patients. However, a specialist should be able to diagnose it based on the TTT and symptoms. Are you seeing an autonomic dysfunction specialist? Can you get to one if not?

I would not assume shy-drager if your doctor says you don't have POTS! S-D is rare and as you note, mostly in older people, and more likely in men. POTS is far more common in young women. I would not start worrying about anything with a poor prognosis until a doctor diagnoses one.

Katherine

[mom4cem]

I also think there is a gray area. That is the hardest to be in. When you don't fit or meet the strict criteria set up for a diagnosis then they don't know what to do with you. I certainly think that it is still very possible that pots is what you have. Dysautonomia symptoms vary greatly.

Don't give up. I would speak to the cardio directly and see what she feels the next step should be for you.

Good luck.

[Guest dionna]

i apologize for you having such a hard time. don't give up hope or faith. in the end you will just be stronger. i know easier said than done. just keep on trying and maybe something will come up for you. there really aren't any words that could be said to make you feel better but if i was there i would give you a hug and tell you that things will be alright. 18 years... i have only been alive almost 21 years now. i can't imagine being so ill for that long. you are so much stronger than i could ever imagine being. i can't believe that no doctor has been able to help you yet! there is one out there though. and i will pray for you and i hope that you get your spirits up. may God bless you.

dionna

[Tammy]

Rebecca,

(Hey great name, we named our daughter Rebecca So sorry you are having such a difficult time with all the nasty symptoms. Please don't give up and try to be understanding toward your husband also as it is so hard for them to understand... mine recently told me he doesn't feel I'm trying hard enough to feel better???? and I just try and think about how impossible it is for them to understand as they have never felt as sick and almost near death as we have - but there's days where I lose faith in myself to - I turn to God and he carries me through those days, but it isn't easy for sure! So don't loose faith in yourself or your God.

I will keep you in my prayers and hope help will come your way

- Tammy

[nadine]

Rebecca-

I am feeling your frustration, fear and pain. I too was told that I may have Shy-Drager/MSA and was sent to a neurologist regarding this in Feb. I am 46. He spent a total of two mins. evaluating me physically and chit chatted the rest of the time. I was so frustrated with this MD. He somehow decided I didn't have it. Some of his reasons seem to be based on my age and my symptoms didn't seem as obvious to him. However, when reading the websites on this- I am not convinced. I do believe I have symptoms that may be early signs, some get worse.

I am trying to keep my mental well being in a good place to continue to fight whatever is going on. I will continue to see physicians to address new symptoms and voice my concerns, as things have changed. You are correct in that prognosis is not usually good for that diagnosis, when first mentioned to me, I was horrified at what that would mean. However, in honesty I just wanted clear diagnosis. I think many can understand where I am coming from.

I too wait for clarity on all of this. I know I have NCS, I know CFIDS, ?POTS ?FM and again not convinced about the MSA, not being a factor. It is a challange to know what to try next.

My husband has been my rock for so many years, but the frustration is there at times, how can it not be. A person would be in denial i think to not want the health of a partner to return and to deny the frustration and stress that chronic illness has on a relationship and family. This is particularly difficult as time goes on with no end in sight. I certainly get very angry at times, so when the hubby vents and shows his frustration I understand. The key is too keep communication open.

I find that I just want to stop talking about how I feel, as it is so constant in our lives. This however, doesn't let them know just what the daily battle is. It's a difficult time for all. Our lives are not the same. I have to make myself focus on the positive and deal with the issues the best i can. How we will manage day to day is the best I can do.

Just wanted to let you know you are not alone.

[ellen]

Dear Rebecca,

I'm sorry I have to edit my post- it had no text.

I hope you get some good news from your doctor. I know how you feel not having a diagnosis. I have had symptoms for 15 years, and have been treated with Florinef for 8 years without a Dx.

The good thing is there are a variety of treatments available, even if you don't get an official Dx, and it sounds like you have a good doctor. I believe you will get an answer sooner or later, like all of us. Please let us know what the results are, - Ellen

[Beccapooh]

Hey everyone, thank you for the kind words of wisdom and hope!!!

I never did hear back from the cardiologist today. Bummer. I guess I'm holding out hope that she's trying to contact Dr. Grubb about me (oh, please, please, please...). She seemed like she really did want to get to the bottom of this for me. She also seemed like if it came back at a 27, 28 or 28 BPM increase that she might still treat me as if I have POTS (??? MAYBE???). At this point, I just wish that they'd try some of the other treatments. I clearly respond to Mestinon (although my Neuro just told me that he wants to remove me from it because it's not good to be on long term!!! This is the only drug that I take right now and it does help somewhat!!). I also respond to IVIG, IV fluids, salt increased (big time), rest, staying in out of the heat, etc. Doesn't differential count at all here??

I also understand how hard this is for my husband, truly I do. However, I find that I sometimes just keep symptoms to myself these days. I don't want to be that broken record anymore. Although, sometimes I'm afraid that people interpret this as "Oh, well, she's all better now, huh?", you know? My best girl friend keeps on telling me that I shouldn't be upset because I don't "look sick". ARGH!!! Sometimes, it would be so much easier if I did look sick, you know? Does anyone else feel this way? I know that it's a horrible thing to say, but it's true. I also feel like some docs look at me and think that same thing. I'm quite over weight and I'm sure that they attribute all of my problems to that. However, I wasn't always fat. I got this way by not being able to exercise or be very active. I can't be in the heat at all and in Colorado it's a little chilly in the winter to go for walks, etc. Anyway, my point is that being sick is what's made me fat, not the other way around!!!

I go for my echo on Thursday, so maybe something will turn up there, huh? If not, I'm going to ask for the blood test and the 24 hour urine thing. Those should show something, right???

Thanks again, guys!!

Rebecca

[bttrflyamby1981]

Hi Rebecca,

I know just how you feel. In fact I had posted almost the same thing a little while ago.

It's hard not to know what you "really" have. I have been searching for answers for over three years now, and I'm not going to give up hope after coming this far! And I hope you don't either.

Sending my best and a big (((HUG)))!!!

Amber

[sstephan]

Hi Rebecca,

Oh can I relate to your post. For a few years I thought I was just going crazy. I felt as though the doctors thought I was nuts and they just bounced me around from specialist to specialist. It is literally a full time job going to doctors. This has been a strain on my marriage as well. My husband tries to understand but deep down I know that he thinks I make more out of it than it is. He tries to say he is supportive but then doesn't clear his schedule to attend doctor appts with me and therefore does not understand what I go through. I too have learned to not talk about it and my symptoms such as heart palps, racing heart, nausea etc are so normal to me that I actually experience them and don't say anything to anyone around me. Sometimes it is just easier that way. I know what you mean about not looking sick. It is not as though you want to look "sick", however I always feel that if I go to the doctor office with make up on and looking somewhat put together, I will not be taken seriously even though I feel like h-ll. Please know that this forum helps me more than my doctors do. You are not alone- hang in there. As my mom used to tell me when I was a little girl- God never gives you more than you can handle. (us potsy people must be able to handle it all let me tell you)

Susan

[taylortotmom]

Oh, Rebecca your story sounds painfully familiar. I do not have POTS but I have severe dysautonomia. I have NCS, severe hypotension (my blood pressure bottomed out on my TTT), severe hydration/heat issues among some verified cardiac abnormalities.

Hopefully, you will soon find a doctor that understands how variable the dysautonomias are and that POTS is just one segment of the dysautonomia population. As you said, the treatment is essentially the same regardless what type of dysautonomia one has- so increased fluids and salt among other things helpes most of us. Have you done any nonpharmacological management while waiting for a diagnosis on your own? Do any of this things help?

It sounds unreasonable that your doctor is looking for a specific 30 pt increase in pulse during the tilt to diagnose you. While you may not have POTS, you very well could have another dysautonomia. Let me also say that you may have dysautonomia that is NOT POTS and not MSA. So don't necessarily assume you have Shy-Drager because you don't have POTS. Yes, it is possible. But, it is also possible and very likely that you have a more generalized dysautonomia that just doesn't quite fit in with any other subset but isn't anymore dangerous (fortunately) than POTS. So, there is a whole lot of grey area in these disorders.

Good luck to you- I hope some of this makes sense.

[calypso]

One of the hallmark symptoms of Shy-Drager, from what I understand, is the body's inability to maintain BP. You would often be fainting when standing. Even if you do faint, I agree w/ Katherine that this is such a rare disease, and even more rare in a woman of your age. Yes, anything's possible, but I don't even know an older adult with this disease, yet alone heard of someone young with it. Stop worrying about it for now.

I would focus on keeping a journal regarding what helps you -- for instance, note what you eat, do, how you sleep, etc., on various days and track your symptoms. See if there are any links. Experiment with your diet. Try cutting out or cutting back on any processed foods and sugar. You might consider taking a good multivitamin if you don't already. That's helped me immensely. Exercise if at all possible, even just walking.

Also, how long have you had POTS-like symptoms? If it's been a long time, maybe your body is just adjusting, so you only have a 27-bpm increase and maybe used to have a larger increase. Or maybe you are slowly getting better. Have hope and try to focus on NOT having a diagnosis. It's hard not to have answers, but on the other hand, if you have no diagnosis, that's not totally a bad thing. I'd rather have my body out of whack and no diagnosis than have a disease with a name.

Hang in there, Rebecca. We've all been there.

Amy

[Beccapooh]

See, that's what I thought, too. I've had POTSy symptoms since I was 16......I'm now 34. Also, I'm not really worried about Shy-Drager at all.......it was something that I had thought about in moment and have since thought better of it!!! Thanks, though for keeping me grounded!!!

I hear what you're saying about NOT getting a "bad" DX, but, to be quite honest, I NEED a DX at this point. I need to know that I'm not crazy, but, mainly I need some treatment!!!! I can't stay like this forever. I want my life back, at least to some degree. I know that there's no cure, but, that there is treatment. To date, the only treatments I've been given were for MG, which coincidentally are similar to the ones for POTS. I've taken Mestinon and IVIG treatments, along with steroids and immunosupressants.

My Neuro has decided that I can't stay on the Mestinon forever, due to some ill effects on the body. Now if that gets taken away, I'll have no treatment at all!!! I will not be able to function without something, you know???

It's been years and years of me being ill and without a DX I do seem crazy, to some folks. Especially, some doctors. I think that I need to feel somewhat vendicated. As wrong as that sounds, it's true. I guess, if nothing else, I need to know WHAT I have because I have children. I need to know if something's wrong with me that I could have passed onto them, too. They're both girls and I know that POTS and just plain dysautonomia in general, if I'm not mistaken, is more prevailant in women.

The journal idea is great, because as it is, I don't seem to see any pattern to my sypmtoms. I'm only afraid that I'll forget to do it, because my brain seems to be foggy and slippery these days. I can't remember anything anymore and it really scares me. I forget everything from minute to huge. Nothing is off limits for my mind to flush!!!

And, thanks to everyone who has replied to me and been so supportive. It's been more valuable than I can ever express!!!

Bec

PS - I had my echo today, but of course I have not gotten any results yet!!! LOL

[calypso]

Rebecca,

I just wanted to add that you are NOT crazy. Your feelings are real. Whatever symptoms you have, you have. It makes me so angry when doctors say "it's in your head" or "it's just anxiety or depression" or that if it's not diagnosable, it's a mental disorder. That is absolutely not true. Every body is different, and that means each of us has our own set of genes and body chemicals that can go awry. This is why it's so hard to treat a disorder like POTS, because the causes are many, the treatments work on some but not on others, and you have to go through a lot of trial-and-error to find what helps you.

Again, you're not crazy. You are just you. Be patient. Also, I saw that you were diagnosed with MVP syndrome, which is again a constellation of symptoms that may or may not be related to having prolapse of the mitral valve. Since this condition is only treated symptomatically, I wouldn't worry too much about this diagnosis. I would focus on trying various medications or treatments (non-medical ones, too) to see what helps to reduce your symptoms.

Amy