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Still At Mayo: Some Questions For You All


LindaJoy
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Hi, Everyone,

I'm still at Mayo. I go home next week with test kits (blood and urine) to do after I purposely induce a bad flushing episode. That's what I'm here trying to get diagnosed so I can avoid! But, anyway, I guess it's necessary. The doctor, Dr. Butterfield, is leaning towards the indolent kind of mastocytosis.

I have some questions for you all, though, about neurological problems. I'm not quite sure I trust my Mayo neuro doctor's findings, so I want to run them by all of you. Thanks, in advance.

She performed a sweat test, which showed just a little neuropathy in my upper left arm and lower right leg, everything else normal. I also did the pulminary blow test, which she said showed some dehydration. I did the test where they put "sweat" on your skin, then put electrical current through it. Normal. Finally, another tilt. Normal. When I went to see her, she did, I think, a pretty thorough hands-on exam. She said she saw no signs whatsoever of needing to do an EMG. Yet, my muscles feel stiff and quivery, I have fasiculations in my legs especially and sometimes other places, blurred vision, dizziness, and now I'm starting to experience some incontinence (this comes, though, with a burning pain in my gut, like maybe it's from irritable bladder?). I was reading up on shy drager, and surely something unusual would have shown in these tests if I had that, wouldn't it?

She said my POTS isn't even that bad right now, so surely I don't have anything as terrible as PAF or shy-drager, do I, given these other symptoms? I guess the dizziness, muscle fasiculations and incontinence are bothering me because they are new to me. Dizziness can come with mastocytosis, I've read. The incontinence can come with irritable bladder, which I know is burning right now. And, my ears feel full a lot, which can cause the dizziness. I just want to see what you all think about my testing. Thorough, do you think?

Thanks, everyone. As always, I'm so glad you're here.

LindaJoy

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I think that if you're not satisfied with the tests performed, or if you feel you'd like a second opinion, you should persue that. Given all your health problems, I wouldn't discourage you from finding a doctor to perform an EMG. My autonomic tests, for example, are mostly normal (aside for the tilt), but my single-fiber EMG is positive.

You tested positive for peripherial neuropathy with the sweat test, so it makes sense to me that someone should explore how bad that neuropathy is by conducting an EMG...it's a relatively cheap test so why not?

I tend to look at doctors as consultants. I've done enough reading in medicine to feel like I'm able to understand my own situation fairly well, so if I feel a doctor has overlooked something with my health, I find another doctor to do what I need/want done. It's been a matter of survival for me to have this attitude, and I can tell you that had I listened to every doctor and not asked questions, I'd still be bed bound.

You know your body. If you feel you want other tests done, I'd say ask about them.

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Hi LindaJoy,

I think if you have any doubts or questions as to tests they have or haven't done, bring it up to them at your next consultation/meeting with them while you're still at the Mayo. I could just kick myself for not doing so in 2001 when I was at the Mayo. I left with so many questions and really didn't feel like they made any progress in diagnosis for me, and if I could go back, which now with a toddler at home, it's impossible to leave without any daycare, I would pursue other tests to figure out what's really going on with this in hopes of some guidance in what to do that would actually help me! Don't give in until you have the answers you want and feel comfortable with.

Take care,

Tammy

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Thanks for your responses, but easier said than done, I'm afraid. I requested an EMG, but the neuro I had said that she felt, given my autonomic tests and her hands-on evaluation, that I didn't give her even an inkling to do an EMG. She said that anything that showed on my other tests were because I was dehydrated, and she could tell that. And, with that said, I will probably not be given another doctor for a second opinion while here. I've requested a new primary doctor three times while here, to no avail. Things don't work here how we think they should!

Yes, I would like a second opinion, and I would have liked an EMG, but since my first doctor said that all of my other tests were good, I know I will not be tested any further.

I was just wondering, though. MightyMouse, maybe you can help with this. If I had anything as dreadful as shy drager, surely that would have shown on these tests, especially since I've had POTS for a while now, wouldn't they? My autonomic test results were worse last year at CCF than this past week at Mayo. The testing was different, but I've heard that the sweat test is a pretty good test. What do you think, everyone?

Thanks.

Linda

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LindaJoy,

I was under the impression that your entire Mayo visit was a second opinion to your treatment at Cleveland. Maybe I am misunderstanding. But if this is a second opinion, your chances of getting another opinion authorized are pretty low -- this is not meant to zap your spirits, but I'm just being honest. Mayo and Cleveland are two of the best research centers in the country, and maybe even the world.

I have had fasciculations for three years and for the first year and a half of POTS had muscle wasting, and had an EMG. It showed nothing. This test doesn't really say much. If you want a muscle test that absolutely, definitively will give you an answer, the muscle biopsy is the gold standard. But it really doesn't sound like you have a muscle disease.

If you had Shy-Drager, it would have been detected by now. People who have Shy-Drager tend to faint due to BP dropping to nearly nothing when they stand, and they also tend to be much, much older than you and don't usually have POTS. I would not be worried about this.

I would probably be more worried about the mastocytosis and the bladder issue -- because the bladder thing may be an infection of sorts (although you've probably been tested for that). Several others here have problems with incontinence and no answers either.

I so wish you could get a clear explanation of what was going on, but sometimes you have to just try and treat the symptoms as best as possible to function as well as you can. Never give up on finding answers, but also try not to wage your bets on it happening. Hang in there and good luck.

Amy

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Wish I could give you some help here but I don't really know what to suggest. I'm sure once they have made their minds up on what tests they will do and not do depending upon results then I'm sure they are stuck on that.

Outside of pushing for an emg, which many Dr's will get testy when we request things be done, probably the only way then is to go outside and see a neuro on your own.

Hope you are feeling a bit better. :);)

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hi linda -

i know that you have been through the ringer as of late...i haven't been able to always respond/ chime in b/c of my own health but you have been in my thoughts & prayers often.

i did want to answer your question though regarding Autonomic Failure, Shy-Drager, etc. i can almost guarantee that you don't have shy-drager. it has VERY different presentation/characteristics and the fact that your autonomic testing was actually better now at Mayo than it was last year at CC also points against this. the testing/results that you've shared also do not sound at all like autonomic failure. i have the diagnosis myself and have done extensive reading, research, & talking with numerous of the top autonomic docs in the past few years. your testing would have different results that it does for autonomic failure or shy-drager/MSA.

obviously that doesn't mean you still don't have a lot going on health-wise and i really do hope you find some relief soon...

:) melissa

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