Sylvie thank-you very much for explaining. It has taken me five long years to learn a certain amount about RA and connective tissue diseases. Now most of my symptoms appear to be neurological so I'm having to slowly acquire more knowledge about the workings of the brain and the nervous system. I know a little already about SFN and the diseases that can trigger it. But I didn't realise that dysautonomia is less commonly a problem for those with SFN - I assumed the two were interrelated. I'm increasingly convinced that I have the more neurological MS-like type of Sjogrens but getting diagnosis/ help/treatment for this will not be easy I suspect. Certainly my present and previous rheumatologists haven't seemed to get beyond my negative/equivocal autoantibodies and history of non erosive RA.

I do have paired oligloclonal bands which seem significant to me but not to the previous neurologist or present rheumatologist so I'm hoping that the new hospital will serve me better re rare autoimmune diseases. Sorry you too are falling into the 3% with both types of neuropathy. Have you tried oral steroids at all and if so did they help with the autonomic symptoms at all? The did help me a great deal but all my specialist focuses on is whether my joints are inflammed or not.

Take care and thanks again for your help, Mat

PS Mat,

I understand why you are particularly concerned with your ophthalmologic symptoms. ..as far as I know, only the dry eye is a symptom of dysautonomia. ...although, as I've written, I apparently have some sort of nerve damage too.

I'm so glad you are seeing someone, and let us know how it turns out.

S

Hi Mat,

Thank you for your lovely letter and your concern.

So far I have not tested positive for an underlying autoimmune disorder. This is both bad and good news....for I know, as in your case, having one such disorder may reflect the possibility of another. However, an underlying autoimmune condition may be treated, and I'm in contact now with someone on this site who is beginning to respond well to infusions. As I mentioned, although it takes forever, I am still searching for a more definitive diagnosis that may lead to effective treatment.

Because i have no defined underlying disorder, I've not been offered steriods. I'm not eager for them......I'm afraid of their side effects. I'm merely on a low dose of nortripyline for pain, and propanalol for my orthostatic intolerance and POTS. Very little help....so far. You may know the feeling,....I'm not sure, of a rapid, unexpected onset of chronic illness......still navigating all of those grief stages (except denial....that didn't last long...but I sort of wish it did!)

Oh, just to clarify....I really don't know the stats on concurrent sensory and autonomic neuropathy. ..the 3 percent datum dealt only with POTS patients...who tend to be young women. I've found very little so far on coexistence.... perhaps it deserves a thread here....I'd love to see more explanations for this....both in terms of personal stories and research.

Thanks again for your post!

Sylvie

Actually, there are several vision symptoms from dysautonomia/autonomic neuropathy. They include simply blurry vision, diplopia (double vision), tunnel vision, dry eye, and difficulty with pupils changing light conditions (making night vision more difficult). There may even be more related vision problems.

Mat, you should ask the ophthalmologist about this and whether any of your problems might be related. I really wouldn't be surprised if they were.

--among people who suffer from sensory small fiber neuropathy, autonomic symptoms are probably more common that is realized, although often the symptoms are mild or "subclinical".

The most common autonomic symptoms that are reported are hypo or hyperhydrosis--disorders of sweating (and one of the most commonly used tests for autonomic small fiber involvement is the "sweat test"--sudomotor axon reflex testing), but there are a decent number who report some degree of orthostatic hypotension (blood pressure reduction on quick standing), and some even report problems with gastric emptying/motility/constipation.

Of course, gastric dysregulation is common in diabetes, in which the first nerves typically damaged are the small fiber ones; diabetic autonomic neuropathy is recognized as a specific clinical entity.

See:


http://neuromuscular.wustl.edu/autonomic.html

http://neuromuscular.wustl.edu/senso...tml#idiopathic

http://neuromuscular.wustl.edu/sensory-small.html

I agree on all points.

And although there are MANY causes of PN, Diabetic neuropathy and diabetic autonomic neuropathy are the most common causes of peripheral neuropathy.

We don't often use the term dysautonomia in the UK which is where Mat and I are both from. It tends to be referred to as autonomic dysfunction or autonomic disorder or autonomic neuropathy, if there is confirmed nerve damage.

Interestingly, yesterday I received cervical spine MRI results that show multiple herniated discs with nerve root impingements. The neck is moving out of the natural C shape into a straightened line. Also, there is a herniation at the bottom of my skills which may or may not be linked to my spina bifida meningocele. Given that we know my vagus nerve is damaged, I wonder if there's a link to my neck issues? I'm seeing my wonderful gastoparesis specialist in a fortnight and I have questions!

This is why it's best to clarify that several terms mean the same thing. I actually try to use more then one term when posting here (sometimes even within the same post) so that others will know what I'm talking about, in case they are used to other terms.

If you look up Dysautonomia on Wiki, it says "(or Autonomic neuropathy)"...as some other sites do the same. If you search autonomic neuropathy, the dysautonomia for Wiki appears. Different areas...and even different doctors use various terms, all meaning the same condition. Of course, there are subsets of this condition (Pure Autonomic failure, etc) that are separate problems.

SylvieM,

I didn't know where to put this post so I'll start here.

I just finished some of my workup. So far no autonomic anything. Just had SFN biopsies this week.
Creepy crawly burning, freezing all over. Freezing up and down spine..comes and goes. Hot water sensations drip down my left thigh. Left foot and leg burn, ache but only when I'm up and about or if it is dependent. Hand, feet and nose freeze...all my life. Restless Leg issues on/off...mostly never now that I discovered magnesium. Bilateral Meniere's disease (20+ yrs), GAD with panic attack, severe depression, 2 back injuries, degeneration of c-spine but I'm in my 40s, macrocytosis, erythromalalgia (on/off 6 yrs finally got a diagnosis), ?? Raynauds, IBS-C (all my life), ovarian cysts, fibroid uterine tumors, SICCA Syndrome..just diagnosed (at least 6 yrs with that)...Lyrica started. Brain shocks...those started in 2014 and still persist. If I leave my home, I just suffer from freezing and anxiety. I can tolerate nothing. Can't hardly even watch the news anymore. Exercise decreased to Pilates and swimming, was told to gain weight..I was very active/athletic so this is hard for me...already disabled from Meniere's. My tongue is now scalded, this goes down my throat, sometimes my lungs. Crazy stuff. After yrs of being dismissed, I have to get this bad before doctors listen. However, neurologists are still ???. Rheumatologists have differing answers. Maybe I am crazy. NOTHING in any tests, blood tests anything. I should be the picture of health. Was put on B12 shots just in case yrs ago but I continue to get worse.
I don't tolerate medications. Anything they put me on has to be a 1/4th of the lowest dose. Been in serotonin syndrome 3 times in the past 10 yrs. One of those times, I had to figure it out on my own so I was in severe hypertension for about 2 weeks.

They may still do a lip biopsy.
If all this is negative (sfn bx) then I think I've pushed my nerves beyond their limits and this is it.
Medication induced...not on much of anything really and meds I was on in recently when this got bad I was not on them in 2010 when most of this appeared. Guess I will know more when the biopsies come back...or not.

Over 6 yrs, been to hematologist, rhuematologists, neurologists, pcps, gynecologists, psychiatrist, therapists. At least 6 different ENT with allergy testing etc.

Any suggestions/thoughts from anyone welcome.

Dear I,

I'm so sorry you are feeling so unwell....I know disheartening it can be to be without a clear understanding of why you are feeling the way you are.

You write that you are not (yet) diagnosed with any type of autonomic disorder....yet you awaiting the results of your biopsies....but have you had a tilt table test? I was unaware I had such profound orthostatic intolerance....which explained a lot of my fatigue and other symptoms. I'm actually going to shell out more money to repeat the tests at the NYU dysautonomia center. They do concurrent testing of catecholamine levels....which may lead to more targeted treatment. However, you and I both know that effective treatment for this, even with more information, is elusive. However, measuring these levels might provide insight into anxiety and other hyperadrenergic issues.

Given your sensitivity to meds, you might also wish to look into Mast Cell Activation Disorder. (big thread here below....also several websites and forums on line). I'm having trouble getting a sponsoring doc for testing...for no specialists in all of NYC, but it's on the list.

A key goal of mine is to get my depression and anxiety more in check...I've had much spontaneous improvement since last April, when all of this hit....but I know I have a way to go, and it's essential to face this illness feeling emotionally stronger. A tall order! Talk therapy, as well as body work and massage are so helpful to me.....as you know, I have to be wary of meds.

This forum has been so helpful to me.....so many smart and experienced people here...I hope they weigh in for you.....for I'm still new to all of this.

So, as I tell myself today, because this has been a really tough week for me, just be kind to yourself and try to keep your strength and optimism up....for I know there are a number of people on this site who have been far sicker far longer than I have....and they have not only found helpful doctors, but more accurate diagnoses and helpful treatment....and they have the knowledge and compassion to help folks like me.

All my best,
Sylvie