[Amr1151]

Hi!

I am new to the forum, well.... To posting- I've been reading for awhile! Wondering if anyone could me some info. I had a tilt table study done for POTS/dysautonomia and the results of the QSweat showed Patent Sensory loss. Ever test they perform for the tilt table study appears to be off.

I return to my neuro in August and was just curious if anyone knows other tests he may order?

Thanks so much if anyone has any input!

[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.

[Kitt]

Welcome Amr1151.

[Amr1151]

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.

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!!!!

[en bloc]

Well, it is quite common to be sero-negative for some of the autoimmune diseases...especially Sjogren's. I'm am completely sero-negative but my lip biopsy was very positive.

That being said, your negative labs could easily be explained by the medications you take...as many argue that immunosuppressive drugs alter antibody testing for Sjogren's and other AI diseases...and logic itself would agree.

Personally, you should be followed by a good rheumatologist and treated for autoimmune disease. Do you have (or ever had) the butterfly rash typical of Lupus? Or do you have dry mouth/eyes, typical of Sjogren's? I would hope you could find a rheumy to treat you clinically, not based on labs (especially since you take medications that can alter results).

Not sure why anyone would tell you that an autoimmune disease will 'run it's course and be gone'...that's ridiculous. Autoimmune diseases can wax & wane (as can symptoms), especially early in life and then reappear in the 3rd to 4th decade.

It's sounds like you have widespread dysautonomia. The treatments you are taking are good (I take the same combo), but maybe altering doses a little for better control. You should also consider something for the (likely) gastroparesis...like Domperidone. Much of dysautonomia is life-style changes and learning the tricks to keeping BP up, heart rate down, and stomach emptying better. There is a thread link below where i discussed some the things I picked up over the years to help in situations to keep from passing out, etc.

http://neurotalk.psychcentral.com/thread207110.html

I would suggest you get to a neurologist that specializes in autonomic dysfunction. There are other meds out there (like Mestinon) that are being used for this. I was unable to tolerate it (got immediate asthma attacks from bronchial spasms), but others have done well in some limited studies/cases.

You also need to see a rheumy and get better treatment of your AI disease, which may help the dysautonomia from progressing. You (likely) cannot fix the damage already done, but halting or even slowing progression is important. IVIG should also be considered.

[Amr1151]

Luckily my rheum does treat based on symptoms. I did have a minor salivary biopsy and it was negative just like my SSA and SSB antibodies. I take plaquenil. I have plugs in my eyes and on restasis. I'm also on 2 other immunosuppressants in addition to plaquenil.

My original disease was very severe and most of the time that disease doesn't cause renal failure. (Like 1% of the time it does so I hit the jackpot). It normally runs its course and is over sometimes not even requiring treatment. I on the other hand had massive rounds of steroids (1000mg IV x 6 doses) and then 80mg daily x4 months followed by cytoxan infusions x 2 doses but my kidneys still failed. Sometimes that disease can come back but normally doesn't - if it does it tends to show a purpura rash and attacks kidney, GI, joints and skin (small vessel vasculitis). Back at the children's hospital where I was treated they always wondered if it was lupus and my physicians always said make sure they keep checking for lupus.

I am lucky that I live in a city with a top notch teaching facility but I don't think anyone realized how bad the dysautonomia was. At my hospital there isn't anyone who specializes in autonomic dysfunction. So I saw a cardiologist.

The new neuro I saw does only see autonomic dysfunction patients. So hopefully I am headed in the right direction.

I have talked to my doctor before about IVIG but maybe now they will be willing to give it a try.

[en bloc]

Well, good to hear you are at least being treated with Plaquenil and Restasis.

Finding an autonomic specialist isn't easy, so hopefully you have hooked up with a good one. The Mayo does have a good autonomic testing facility and they are the ones who I believe started trials with Mestinon. You might want to inquire about this medicine as it has potential to really help in some cases. Just didn't work for me...but I have many drug reactions.

http://en.wikipedia.org/wiki/Pyridostigmine (mentioned in Clinical uses section)

I know all about 1 Gram IV steroids. I would get this 3-5 days in a row sometimes each month. I also did the high dose daily route at the beginning of my disability (1996). On/off steroids since then have of course cost me dearly in horrific side-effects (thin skin, osteoporosis with a current broken ankle from a fall, and Cushing's syndrome) and I'll never be able to get off Florinef as my adrenals won't make aldosterone anymore.

I receive IVIG for PID (Primary Immune Deficiency) but starting this month we are slowly increasing the dose to neuropathy levels (2gms/kg) over the next 6 months in order to help halt or at least slow progression of my autonomic and peripheral neuropathies. I am at the point with the orthostatic hypotension/NMH (neurally mediated hypotension) of having times where I am not able to maintain an upright position for any length of time (sometimes that can be just 5 minutes) without systolic BP dropping into the 60's or 70's. If there is anything that I can pass along to you, it's advise to NOT let it get this bad before you look (EVERYWHERE) for halting progression. Do everything you can NOW to preserve what you have and improvise, adapt, and overcome your current deficiencies.

One note about your comment on carbs bothering you. Gastroparesis commonly causes a condition called Small Intestine Bacterial Overgrowth (SIBO). It's from the lack of motility allowing bacteria to move up into small intestine...and even into stomach. This can cause increase bloating, nausea, discomfort, etc. CARBS/sugars feeds this bacteria and make it worse. So you may actually have some SIBO going on as for why you have increased problems with carbs. There is a special antibiotic (Rifaximin) that only works in the GI that can be used to help this. Other antibiotics can also help. But avoiding carbs and taking a probiotic is helpful. You really might benefit from a gastric empty test/study (eating some contrast laced scrambled eggs and lay on a table being scanned for a few hours) to see how bad you motility is.

There are of course things you can do to help this as well. Eat small meals, nothing after 6 pm to avoid nighttime symptoms, elevate head of bed to allow gravity to help emptying at night, gastroparesis diet to avoid raw veggies, fruits & nuts (hardest to digest), mechanical diet to grind meats in a processor/blender (they still taste the same), walk after eating, and take Domperidone (not available in the US, but most doctors will Rx it for getting in UK or other European countries).

If you have Sjogren's and IT'S what's causing the autonomic dysfunction, then it is likely permanent and slowing progression is the only treatment (other then symptomatically). My neuro/rheumy at Hopkins (only one in the country to be both specialties) specializes/researches in neuro complications of Sjogren's. According to him the Sjogren's can cause damage directly to the dorsal root ganglia (DRG) and autonomic ganglia...this is why it's permanent. They confirmed this with me by doing a special MRI/MRN to look specifically at the DRG. Mine is bilaterally enlarged and has increased signal...consistent with ganglionitis. This may be what you have. Google some of this, read, and discuss with your doctor in August.

Good luck and if you have any questions, I'd be happy to help with whatever I can.