Autonomic Neuropathy (abnormal results)

[MsIzzy]

Hi family!

In attempt I answer some of the (what seem) unanswerable symptoms-like sleeping with the window open on a 50 degree day and the fans running in the windows-

My Rheumitologist asked me to do a QSAR sweat test. They measured the sweat from my forearm, inside ankle, back of knee, and top of foot. These areas are nerve areas activated by a stimulus and sweat is measured.

Mine was mildly abnormal and although Sjogren's  can be a result he stated this is not always normal-and this test usually indicates a beginning to more aggressive nerve damage.

Can any of you relate?

Also-any of you have input on the best eye drops to use?


Thanks and love!

[SjoAmy]

Systane Balance Restorative drops.   Yes, they cost.  Ask your eye doc for samples & coupons!  Those samples saved my eyes!

[Chris]

My sweat test and skin biopsy were positive for small fiber neuropathy.
Did your doctor suggest a skin biopsy??

[MsIzzy]

Thank you for the eye drop recommendation!! I will definitely be on the search for these--have you ever heard of drops called "coastal?"

Chris-I will be doing a lip biopsy to securely verify I have Sjogrens (although its already been given I have a positive diagnosis). I am seeing the neurologist tomorrow and we will she if she would like to do a full run of tests.

Do you have any input on what I should ask the neurologist when I see her tomorrow?

[Chris]

I would ask for the skin biopsy.....

[anita]

You don't say if you have any other autonomic symptoms...and there are MANY.    I'm not sure of the benefit a skin biopsy would be...since you already have mildly positive finding.    Your QSART is just one of many autonomic tests; but again other tests are done IF you have other symptoms that need to be addressed.   If you have PN pain, tingling, burning, numbness, etc, then yes, a skin biopsy would be the best test.   

Autonomic neuropathy CAN be slowly progressive or it can just be related to medications or other conditions like diabetes.  It all depends on the cause and/or other symptoms.

As for your appt:  If you can tell us a little more about your symptoms, we might be of more help with questions for your neurologist.  Otherwise, the best answer would be to make a list of your symptoms (and what is most troublesome). 

[SjoAmy]

I have never yet heard of Coastal eye drops.

I second the skin biopsy.  Perhaps EMG.  Depends upon your symptoms.  I'd like to find more about your symptoms before I spit out every neuro test lol

[Annie1188]

Hi All~~I'm pretty new to this forum, but have been looking for information re: autonomic neuropathy, esp. in the digestive tract. I've been accepted into the Sjogren's research study at Oklahoma Medical Research Foundation. I haven't been diagnosed with Sjogren's - all blood work is negative, but have dry eyes, dry mouth, difficulty swallowing, fatigue, etc. The problem I'm having most difficulty with now is constipation, which has been present since I was 7 or 8 yo. My current GI doc will most likely stop practicing soon as he has cancer and has become quite frail; there are no rheumatologists in my city who will deal with Sjogren's. So......my question is this:

If I am showing signs of autonomic neuropathy of the bowel, should I go to my GI doc or a neurologist?

Any information re: autonomic neuropathy of the bowel or suggestions of any kind would be greatly appreciated! Thanks~~

Ann

[anita]

Annie,

Welcome!

If you have GI related autonomic dysfunction you should have a gastric empty test to see if gastroparesis is to blame.  This is when you GI tract motility is abnormally slow.  It can cause stomach nausea, pain, bloating, early fullness, and constipation.

You need a neuro to address autonomic neuropathy as a whole (and the cause), but a GI to specifically address your GI system and treatment of such.

BTW, Sjogren's is known to cause autonomic neuropathy, including gastroparesis...many of here have it.  Treatments can be diet/lifestyle changes to medications like Domperidone. 

[Annie1188]

Hi Anita~~The last gastric emptying was 2008, no gastroparesis, and went through small intestine to large intestine normally. The constipation was bad then, but worse now. I also have early satiety, bloating, gas (which doesn't seem to go anywhere - sorry if that's TMI!). I'm now on 5mg Reglan a.m. and p.m., take two Gas X chewable tabs five times per day, plus laxative and stool softener at night. My GI doc suggested Citrucal or Metamucil a couple of months ago...I took ten Citrucal capsules per day, which resulted in simply filling me up so I didn't have any more room for food. Arg.

So, things seem to travel normally through my GI tract, but then stop. I don't know if any of our local neuros deal with this kind of thing. I've been on IVIG for immune deficiency since 2008, which may be helping my dry eyes (or maybe masks the pain), but hasn't seemed to have any affect on the constipation. Hmmm...

Thanks for the welcome and information on which doc deals with what. I had a heart monitor implanted in 2007 after getting out of bed and fainting, fracturing both bones in my wrist, but no one connected that with doing a tilt table test, etc. Why don't docs put 2 and 2 together? After 30 years of accumulating signs and symptoms, I'm maybe a little crazy to expect different results, now, huh? 

Cheers~~Ann

[anita]

I'd request another empty test.

Sounds like you've had some autonomic work-up.  I have had severe autonomic neuropathy for 17 years now; to include a pacemaker, gastroparesis, IST, very low BP when standing, balance issues, temp regulation, livedo retilcuaris, cardiac vasospasms...the list goes on and on.

Did you finally get a tilt table?  Do you take meds for BP, so you won't faint when standing?  Do you have tachy heart rates too?

There are several of us that have immune deficiency on top of Sjogren's and autonomic dysfunction, PN and other problems.  I too get IVIG.

I know all about taking gas x to help with the bloating/discomfort.  I find that taking 2-3 Beano before eating really helps.  It's mechanism of action is that it stops the enzyme that forms gas to begin with.  You should try it...can't hurt.

Reglan is horrible stuff...please be careful.  I can't believe they even prescribe it anymore with all the lawsuits.  It can cause permanent movement disorders.  I had immediate movement disorders when taking it, but luckily it was not permanent.  Have you tried Domperidone?  It works better, but cannot be obtained in the US.  I order mine from Australia now (used to get it from Canada).

Oh, and why don't doctors put 2 & 2 together...because they are idiots in many cases...LOL  You have to do the research yourself and fo to them with the info.  Or head to a big school like Hopkins.  That's where I go.

I also use Miralax.  I find it works better because it pulls fluid into the GI tract (better if you have Sjogren's and are dry).