dsdmom

I am at a loss as to what to say - that is truly horrendous. I am so very sorry for your sister's loss. That saddens me beyond what I can express in words. I myself almost died after delivery due to placenta accreta. It was very scary and extremely tough but I can not even pretend to relate to your sister because I was lucky that my daughter survived. Please let her know that she has all of our thoughts with her.

Just wanted to add my update, as promised. Had my biopsy on Friday - actually from 2 places on my left leg. They are small incisions - about 3 mm - but I was instructed not to get them wet for 3 days. So they have been bandaged up since Friday and I wrapped my leg in saran wrap to shower. It did not hurt at the time - they numbed the area first. But one of the spots is now pretty painful - doesn't look infected though, so I'm hoping it will get better soon. The biopsy is to look at the nerves in this area to see the extent of the damage...results will take up to a month to get back. They sent the biopsies somewhere in New York. He also drew blood for the AChR antibody test - told me that will take 1-4 months to get back. HOpe this info helps!

Maxine - How long were you on the steroids for? And did your glucose levels go back to normal when you stopped?

I've been on prednisone since June - haven't been able to get off the stuff. I hate it. It makes me feel shaky at times, too. But the hardest thing for me is coming off - my autonomic symptoms flare up like crazy. That's why it's been so difficult to get off. I'm down to 17.5 mg now but meanwhile I think (and am scared) I may be developing steroid induced diabetes. Get off it as soon as you can!!!

This was actually really painful for me. The person doing the test says it varies by person - some could fall asleep during it and others are in tears. I was closer to being in tears...

Melissa, I'm so glad you are home and I hope you get to stay there! Please take care of yourself...my thoughts are with you.

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!

I'm curious - what would happen if you drink warm/hot soups/liquids? I can't do it either but I don't know if it's for the same reason that you had.

How long are you supposed to pull for? 5 seconds? 10? 30?

You know, I really hate to discourage anybody from posting success stories on here. It may not work for everybody, but gfish has every right to post what worked for them. We all know our own situations and our own stories and know what may or may not be applicable. I'm glad your daughter is doing better and I hope she continues to do so.

I found this on another dysautonomia site: Dr. Woon Chee Yee Washington University School of Medicine Dept. of Neurology 660 S. Euclid Avenue St. Louis, MO 63110

I would suggest calling the neurology and cardiology departments of the larger hospitals in missouri and ask them if they treat autonomic disorders and do the testing for them as well - tilt table, etc.

There's a paper out there somewhere from the docs at Mayo saying that in some cases POTS is an autoimmune process. IVIG (Intravenous Immunoglobulin) can lessen the symptoms. I would definitely discuss this with your doc. If she knew enough to test you for this antibody she should have heard of this treatment. Here is some reading for you: http://content.nejm.org/cgi/content/full/343/12/847?ck=nck http://www.neurology.org/cgi/content/abstract/70/20/1926

Researchers have found that some dysautonomia patients test positive for the AChR antibodies. Patients who have test positive have been treated with with IVIG. Kudos to your docs for testing for this.

They are definitely not good at splitting - they will break and crumble and you won't get an accurate dose. I use the children's version - it's liquid. I take probably 17mg 3/day - random dose, but that's the great thing about the liquid - you can take whatever dose you need.

The sweat test I had was called QSART - here's a link to a description: http://millercenter.uchicago.edu/learnabou...mic/qsart.shtml One note though is this website says the test will take 2-3 hours to complete. More like 15 minutes I think at the most!! Seriously, not sure where they got that timeframe from.

I have had other testing - pretty standard stuff. TTT, Vasalvar, QSART - which is a sweat test of sorts, but really not inducing sweating - at least it does not sound like what he was thinking of doing for your daughter. Does he normally treat children? I did not know that....

I am having a biopsy w/ Dr Novak next week. I was under the impression he was taking it from my leg. But I could be totally wrong. I'll let you know what happens.

What if - I can't think of the right word here - brain fog? - not apply, umm... qualified! Ok, what if you qualified for a handicap spot? Any chance you could do that? And, if so, is there a spot @ the building that you could take?

OMG!!!!! I am blown away that you have been walking around w/ this for 12 years!!!! That is so wrong I can't even begin to comprehend it. You must be very angry. And relieved. At least you know now you are going to get fixed...so try to hold onto those positive thoughts throughout this experience. And keep us updated.

I'm curious too - was it just the AChR antibodies or were there others they were able to identify?

Hi Jason, Welcome - you are a wonderful husband to be taking such great care of your wife. I know it must be very difficult. I just wanted to let you know that I live in the Boston area. I see Dr. Novak @ UMASS Worcester - he used to be @ Boston Medical Center - perhaps he was the other specialist you saw before? Anyway, the only 2 specialists I know of in this area are Dr. Novak & Dr. Freeman and since you have already seen Dr. Freeman then I really can't offer any other help. But I truly hope that you can find someone to help. Take care

I saw this right before xmas so showed my husband - I got 2 tubes in my stocking! I'm really wary of any fake sweeteners, although I don't have a lot of experience w/ sorbitol. It's ok - to me it tastes like it has fake sweeteners in it. I would probably love this if it weren't for that - so I guess I won't be buying anymore. But if you don't mind sugar alternatives I suggest you try it!

Honestly? I'd talk to HR about it. I don't know where you work or what kind of job you have but if HR is involved in any way, this needs to be brought to their attention stat. I am not the kind of person to go complaining to others and this isn't something I would usually do, but you do not need to be subjected to that sort of behavior. HR should be made aware. This is harassment because of your medical situation. Uncalled for.

A compounding pharmacy could make it up for youin whatever dose you need if you do want to try to taper very very very very slowly. I, too, am very sensitive to things, ad particularly steroids. I went on prednisone for 5 days and it's now been 5 months - I can't get off the stuff. It is ridiculous how slowly I am trying to taper down but we'll get there - it will just take a year probably.