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Sun, Feb 3 11:27am · Small Fiber Neuropathy in Neuropathy

Sorry for the delay in getting back to you @teetee7. The neurotransmitter is through St. Jude. It is the model 3660 Proclaim 5 Elite IPG. It has been over one month now and I can honestly say it has improved my pain levels significantly. The procedure was quite simple. As an outpatient, I was in and out in around 90 minutes.

Like others, I have been suffering the complete gamut of AN symptoms since 2013. From the beginning, I have had intermittent symptoms. One day my OH keeps me from getting out of bed and the next day my BP is steady at 100/70. Without question, the bad days have outnumbered the good. Until about 30 days ago.

I awoke that morning feeling more clear headed then I had been in years. I told my wife that for the first time in recent history, my world was not spinning. In fact, the extreme constipation, urinary issues, OH, severe dry mouth and eyes, etc… all felt better. I thought that I was about to have the best day in what seemed like an eternity.

To my surprise, that good day has turned into 30 days. I am experiencing almost total remission from my AN symptoms. The SFN is still in full force but for me it has been the AN symptoms that have made life not worth living. Add this remission to the improvement from SFN related pain due to the neurotransmitter and I feel human again. I do not know how long this will last so I am enjoying every single day as much as I can. I only hope that other sufferers of AN will someday experience remission from its life altering symptoms.

Fri, Feb 1 10:23am · Small Fiber Neuropathy in Neuropathy

Well @bruces, you are absolutely not alone. The loss of body hair is confirmation of neuropathy. I too have severe SFN. The other symptoms you mention sound like autonomic neuropathy (AN) which is also what I have. It was several years for my AN symptoms to hit me. But when they did, it too was life altering. Within no time I suffered extreme constipation due to a loss of motility. But the life altering symptom was neurogenic orthostatic hypotension (nOH). Anytime I bend down or even turn my head abruptly, my blood pressure drops to dangerous levels. A couple of months back I was hospitalized with facial lacerations. After sitting in a wheelchair for over half an hour, my measured BP was 72/48. My body has acclimated to these extremes. With normal OH, one's BP usually returns to normal once seated. However, with nOH (symptoms of AN), my BP stays at these extreme lows even when seated. Along with the extreme pain from SFN, nOH severely limits my mobility.

For the last 5 years I have seldom left my recliner. It is just too dangerous and difficult to leave the relative safety of my living room. I have taken to sleeping on my recliner because with the meds I'm taking for the nOH, it is too dangerous to ever lay flat. I believe the requirement is to maintain an incline of 15 degrees. If I lay flat, my BP will shoot through the roof immediately.

Again, you are not alone and there are ways to improve your life by lowering your pain. Two months ago, I had a neurotransmitter surgically implanted in my back. The device has brought my pain, which is especially bad at night, down from a 9+ to a 3 or 4. For the first time in years I am feeling relief from my constant pain. You may want to discuss this with your physicians.

Sun, Jan 13 2:34am · Small Fiber Neuropathy in Neuropathy

Hi @cwallen9. I am new to this or any forum. I am sorry to hear that you suffer from SFN. I have been dealing with it for over a decade. Like others who have posted to this forum, I have tried extreme doses of gabapentin, lyrica (very similar to gaba), cymbalta, nortriptyline, amitriptyline and most recently methadone. I am currently taking lyrica, cymbalta and nortriptyline just to take the edge off of the debilitating pain in both legs and feet. I had pretty much given up on having any normalcy in my life until two months ago. I thought I would just try to bear what time I have left without any hope of a pain-free day.

After prescribing methadone for me, my neurologist referred me to the local pain clinic because he did not want the liability of managing my long-term use of methadone. I assumed that the pain clinic would just be a pill mill. To my surprise, my primary physicians at the clinic asked me to read up on Neurotransmitter Implants. I was less than excited by what I read. A year went by before I broached the subject with him again.

My implant procedure took place about 2 months ago. While my experience has been less than spectacular, I can honestly say my days are more tolerable. In fact, some have been down right pleasant. I cannot recall the last time I could say that. Food for thought.

Sun, Jan 13 2:02am · where do I find testing for neuropathic OH in the Phoenix AZ area? in Neuropathy

Hello @atlas. I have become quite well versed with your condition over the past 5 years. I am a 54 yo male (w/o diabetes) and my autonomic dysfunction is associated with severe small fiber neuropathy. The SFN went misdiagnosed for almost a decade (progressive peripheral polyneuropathy) until one day I passed out while stepping out of my car. The neurogenic orthostatic hypotension evolved somewhat slowly. Five years later my average BP is 100/65. On bad days (2-3 days / week) it drops to as low as 75/50 and stays there for upto 24 hours. For the nOH I currently take Fludrocortisone, Midodrine and Mestinon. Even with all of these drugs in my system, last month I past out face first into a glass cocktail cart landing me in the hospital.

The nOH is certainly the most disabling of the symptoms of AN, at least for me. The worst aspect of AN is a constant barrage of new symptoms in any given month. I have lost count of them all. However, last month my pulmonologist explained to me that my severe obstructive sleep apnea has progressed to include central apneas. The same week, my neurologist concluded that my SFN and AN was merely a preamble to the true star performer; Multiple System Atrophy. FINALLY!!! A condition that explains the torture of the last 10 years of my life.

Sorry if I sound rather bleak. I do not intend for this to be the primary focus of my posting. I merely want to share with you that I completely understand what you are going through. I would not wish it upon my worst enemy.

What I have learned over the past 5 years since being diagnosed with nOH, is that most doctors have no clue how to help you other than throwing more and more drugs your way. What has lessened my symptoms more than any of the pharmaceuticals is diet. While I do not have diabetes, I have discovered via trial and error that my nOH is exacerbated by higher than average blood glucose levels. I now have eggs for breakfast bypassing the carb heavy meal that began most of my days.

If you have not yet visited one of the few 'Autonomic Dysfunction' clinics, I strongly recommend that you do so. I live just north of you in the Las Vegas area. While I like both my neurologist and my cardiologist, I am better read in this subject matter than either of them. I imagine that just comes with any rare condition. And yes, what you have is a fairly rare condition. I hope it has not progressed to the point where you need to file for disability. Trust me, they do not know how to deal with your condition. I know this because I am 2 years into a federal lawsuit.

I hope you find a specialist that can provide you with some comfort. Be well.