[Karen S]

Hi. My sister found this forum for me. I have small fiber neuropathy, etiology unknown. I also have FMS and dysautonomia. also obstructive sleep apnea.
My symptoms became much worse about three years ago. I had the FMS diagnosis for many years before that, and could manage with that. This other stuff has been a nightmare. It is amazing how few doctors, even neurologists, can recognize much less treat this disorder.
I don't even know where to start looking for info in this forum, but my sister says a guy named Ken had gotten much symptomatic relief for his SFN from suggestions made to him on this site.
Where do I start?
Karen

[Lara]

Hi Karen,
It's good to meet you. Welcome to the NeuroTalk Forums!
I'm very sorry you're dealing with so much.

I'll post the links to several forums below. You just need to click on the underlined links. I'll also add on some info. regarding dysautonomia that I have in my bookmarks.

All the best to you. I hope you find some answers here.

Peripheral Neuropathy Forum

Fibromyalgia and Chronic Fatigue

Sleep Apnea & Sleep Disorders

What is Dysautonomia? From NDRF site

National Dysautonomia Research Foundation

[glenntaj]

Well, you could do worse than to look at the Peripheral Neuropathy forum here:

http://neurotalk.psychcentral.com/fo...aysprune=&f=20

Lots of info, especially in the Useful Websites "stickies" at the top of that page, and lots of sympathetic people.

Dysautonomia is not uncommon with small-fiber neuropathy, as the small, unmyelinated fibers, in addition to subsuming the sensations of pain and temperature, are also the controllers of a number of autonomic functions--blood pressure, sweat response, digestive motility.

I find it interesting that you report sleep apnea as well, as I'm getting a picture of someone who might have a few pounds to lose, might have impaired glucose tolerance, etc.--can you enlighten us as to your situation, characteristics, syndrome progression, diagnostic journey, and the like? The more info, the more useful responses you'll probably get. (You can do that on the neuropathy board, rather than here, if you like, or in both places.)

[azoyizes]

Hi Karen, and welcome to NeuroTalk. I'm glad your sister sent you here. This is a great place to find information, ask questions, meet new people, and just hang out.

[Karen S]

Thanks for the responses. I have always been overweight, but not massively obese by any means. About three years ago I began having odd symptoms. I had been diagnosed with FMS many years ago, but I started having strange sensations in my chest and stomach, snapping sensations in my head, dizziness, chest pain, insomnia and anxiety as a result.

I had a presyncopal episode. I went to the cardiologist and neurologist. I had a cardiac workup including heart cath. I have mild leaks in two heart valves and hyperlipidemia. I have a history of interstitial cystitis. I have extreme sensitivity to meds and a lot of med allergies with hives and macular papular rashes.

The neuro found slowing in the left temporal lobe, and rare transient spiking on the EEG. Video continuous EEG was done at Emory University that showed no epilepsy, but the slowing and the occasional spikes.
I started having palpitations and tachycardia, especially post prandially.
The neuro doc at Emory suggested I get tilt table testing. I went to a facility in Tenn that does these tests for dysautonomia. I was found to have a significant drop in BP from lying to sitting to standing with multiple PVCS.
I also had a positive QSART test that showed small fiber neuropathy. At that time, I didn't have a lot of neuropathic pain. I was on Trileptal for the ? of simple partial seizures before the Emory hospitalization, but had to go off the drug after a severe skin reaction. The drug did help with the electric sensations that I had developed some time after the initial symptoms.
Since my dermatologist told me not to take any more AEDs since they would also likely cause the same reaction, and since Emory said I didn't have evidence of Epilepsy, I didn't go on another similar drug.

I also had several sleep studies done which showed moderate sleep apnea. I couldn't tolerate the pressures of the CPAP machine and was far too agitated to try to deal with it considering the other symptoms. I couldn't eat or sleep and lost 38 lbs in three months without any attempt to do so.
I got fitted for a SUAD device for the sleep apnea. It is an oral appliance that forces the jaw forward and the airway open. It seemed to help, but then when the Doc adjusted it just a bit more forward, I acquired severe TMJD. Six months of continuous pain from that and a permanent bite change that resulted in bruxism.

In July I went to Vanderbilt University for a consult on the dysautonomia. My blood pressures had improved as I had stopped the bioidentical hormones prescribed to me some months before as I was having issues with the vasodilation that caused vulvodynia and heaviness in both legs.
After the Vandy visit I noticed increase pain in both legs, tingling sensations and would awaken with stomach pain. I continued to have relentless hyperarousals, but slept more hours once on lorazepam at night for increased total sleep time. My eating habits normalized and I regained half the lost weight.

The leg pains, cold sensations and numbness continued to worsen, I had skin biopsies at Emory which showed significant small fiber neuropathy. Emory is clueless on dealing with this except for using neurontin or lyrica. I tried neurontin, couldn't tolerate it and Lyrica is on the worst pills list and I have had friends who have had severe reactions to Lyrica.

I attempted again to go back to a sleep apnea machine. I researched thoroughly and found that Resmed made a VPAP auto. This machine is much easier to deal with as it has a breath by breath technology. I used it faithfully for many weeks. I felt worse during the day! I actually nearly fell asleep at the wheel numerous times, despite this never happening previously. It also tends to lower my BP even further. So now, no treatment for apnea, and the only meds I take is low dose lorazepam at bedtime and vitamins, minerals and such.

I went back to Vandy last week to see their neuro specialist, Dr. Peltier. She is great but had little time to spend with me. Since I have already had a blood test for celiac, she reccommended some other lab tests.
I am insulin resistant and evidently have been for years. The endocrinologist can only offer that perhaps I should go for a low carb diet, and get my weight down more, but we don't even know if the insulin resistance is an issue in my case. I recently read where quinolone antibiotics can cause nerve damage, and I have taken them in the past for chronic UTIs.
I know this is a long message, but any ideas?
Karen

[weegot5kiz]

Hello Karen, welcome to Neuro Talk, do not hesitate to follow those links to the specific forums and post your questions, concerns and or worries, folks here are wonderful helpful kind and a lot of fun to get to know. If you have any question dont hesitate and again welcome to NT

[Momma's Kids]

Welcome and hope you feel better soon.

[glenntaj]

Definitely seems as if small-fiber neuropathy, possibly due to metabolic syndrome--there's a much larger body of reserach evidence out there now than even a few years ago pointing to impaired glucose tolerance causing neural symptoms well before frank diabetes can be diagnosed--but yes, I am wondering from what you wrote how many of your symptoms may have another underlying etiology--and how many may have been exacerbated by medications.

It is interesting that you mention the gluten/celiac angle--gluten sensitivity can result in a very wide range of neural symptoms, including neuropathy and ataxia. And the current serological gold standard for celiac (that is, if an intestinal biopsy hasn't been done)--the anti-transglutaminase IgA test--seems to be correlated to some degree with the extent of villous damage of the intestine, so it often misses early stages. or those whose primary symptoms are neural rather than gastic.

I, and others, certainly have recommended that anyone with neural symptoms should cut down simple sugars and try a gluten-free trial--neither can hurt, and very often they seem to help (sugar and gluten are both neuroexcitatory and eliminating them may help damp down an overactive nervous system).

Don't know if you've posted at the neuropathy board, but it would be good to get some of the experts there to converse with you--if you want, you (or I) could do a cut and paste of your last post and let it be perused.

[FranksAngel]

hello and welcome to neurotalk ... i hope you find answers soon ... there are lots of friendly and supportive people here ... and again ...

[Karen S]

I don't know what particular test I had for the celiac disease, I need to check that out with the doc who ordered it and get a copy of the result.
Dr. Peltier of Vanderbilt ordered some labs for me, some of which were done there and some I will have done here. She reccommended 24 hour urines for heavy metals and the Athena testing. She mentioned a sleep latency test, but that seems to be more for people who have a fair degree of daytime sleepiness.
Since I have relentless hyperarousals, it is unclear if they are due to FMS, OSA or the dysaut. No one really knows how to sort this out for me and symptoms, especially the small fiber neuropathic pain have increased and spread to other areas.
Thanks for the feedback and I will continue to research your site for other ideas. Please feel free to make any helpful suggestions that you may have.
I don't eat a lot of sugar, it makes me sick actually, but I still eat foods with gluten and a fair amount of carbs. Hate to have to give that up as well, but if it helped it would be worth it.
Karen