Quote:
Originally Posted by en bloc
Hi and welcome to NeuroTalk!
If the tilt table was positive then they may order a 24 hour BP monitor and/or 24-48 hr holter monitor to see how you heart and BP are doing.
Further testing really all depends on what symptoms you have. If you have heart racing or lightheadedness when standing, then the above testing may be done. Then again though, if the tilt table and QSART were positive, WHY are they not treating you based upon those findings?
If you have any GI related problems (nausea, fullness after eating just a little, pain, etc) then they may also order a gastric empty test to check your GI motility.
Once they determine you have dysautonomia (which they apparently already have done), then testing to find out why you have it will be next as well. Those types of testing will include checking for diabetes (even pre-diabetes), autoimmune disorders, and other types of peripheral neuropathy (using EMG & NCS testing and skin biopsy).
Finding the cause can be difficult and sometimes they never find it and therefore label it idiopathic. But many aspects of the dysautonomia can be treated (heart related aspects, & GI). Other symptoms (temperature regulation, balance, etc) are just a matter of lifestyle changes.
If you can provide a little more information about your symptoms, we might be able to provide you more information.
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So I have a crazy history. I got sick when I was 16 with an autoimmune disease. (Vasculitis) It caused renal failure. I spent 11 months on dialysis and right after my 18th birthday I received my brothers kidney!!!! The disease i had was suppose to run its course and be "done" so to speak yet since then things have been not so great autoimmune wise. Yet no one knows what autoimmune disease I have now! I test negative to lupus, sjogrens, RA, you name it - I'm negative. I have inflammatory arthritis and once had a weak positive anti-ccp. Given my joints and that test my rheum thought RA for a little but now we don't think. I didn't progress like RA patient.
As far as dysautonomia symptoms. It all started with dizziness and shortness of breath, blurry vision, tachycardia only when I would stand back in 2006. EP studies showed it was not a "heart" problem or a pathway issue but autonomic. Fatigue is a big problem. Low blood pressure yet not quite orthostatic hypotension. Symptoms get a lot worse after eating (rapid pulse, nausea, vomiting) I feel better if I hardly eat and if I stay away from carbs. I stopped sweating. I have dry eyes and mouth (required plugs in my eyes and use restasis). I do have some numbness in my hands and feet. Although that is new and I thought it was a side effect of Topamax.
I am lucky as I get a pre-warning prior to passing out so I don't have any more fainting episodes!
I've been on midodrine, florinef, toprol xl. I actually had never had formal tilt table study. But just found a neuro who has an autonomic function lab so I went there! I didn't do well on the tilt test. Results show baroreflex failure on valsalva with near syncope (my pressure dropped really low) and then the breathing in 5 sec out 5 sec showed less than 5th percentile.
I'm on some medications and immunosuppressants for autoimmune and my kidney transplant.
My neuro is impossible to get ahold of and I don't see him until aug 21st. So I'm trying to gain some knowledge so I can go into the visit prepared.
Thanks for your helpful answer!!!!