Introduction small nerve autonomic
 

Hello all,
I have been recently diagnosed with idiopathic small fiber neuropathy. A year ago I started having heart palpitations and strange buzzing surges that would happen in my upper torso to head just as I was about to fall asleep at night. The only other symptoms were orthostatic hypotension and foot and hand tingling and numbness from certain positions that would go away with moving around. I went and had my blood work done and everything checked out ok. Life was manageable so I just continued on. Over this summer I wasn't able to keep up with my interval strength training routine and was losing range of motion in my neck and shoulders. Shooting pains were happening from my shoulders to my hands randomly day and night. I thought it was due to my weight lifting so I decided to ease up on it and take some time off and switch to light aerobics. It continued to get worse but still wasn't that big of a deal until I woke up one morning in September and could not move my neck. My traps were in severe spasms. Since that day, my body has been ravaged. My arms and shoulders just hurt and fatigue from even folding a towel. Throughout the past four months I have been unable to much that requires my arms because of my neck and shoulders. Through out the course of the past 4 months I now have random shooting and pulsing pains everywhere and muscle twitches all over my body, buzzing feelings in my upper body and down left arm into hand. The low blood pressure has become worse. Some days are worse than others. Is there anyone out there with a similar story? I think the doctor is missing something and could care less what the cause is. I also have a high ANA and have been to a rheumatologist who doesn't know.

So sorry to hear about your recent diagnosis. Was there anything that you had before this started to happen?
Injury, bad infection, procedure, surgery?

Hi Healthgirl,

My experiences are different to yours so I'm unable to offer ideas based on similar issues. But I'd be inclined to think this may have something to do with nerve constriction (pinched nerve) somewhere in your upper spine.

If I were you, I'd be requesting an MRI. I'd also be asking for a referral to a good Neurologist (who would likely order an MRI anyway).

In case you don't know, "idiopathic" means "unknown cause". Your Doctor is giving up. Ask for referrals or at the least an MRI.

My two cents.

Please keep us informed, even if you don't need to come here any more. We love happy endings. :)

Debs

Very sorry about your experience. Many of us have similar stories and we understand your pain. PN is complicated and difficult to treat. Many doctors do give up but some don't. Keep going until you find someone who is compassionate and understands the severity what is going on with you. And you can get a lot of support here.

And--
 

--given the range of symptoms you are experiencing, it is unlikely you have a neuropathy that is just affecting the small fibers; the small, unmyelinated nerve fibers control the sensations of pain and temperature as well as many autonomic functions, but you are also experiencing motor/muscular symptoms. That implies disruption of the larger, myelinated fibers as well, which may be peripheral or may come from spinal or nerve root compression.

Often, the symptoms of problems in the spinal area can be exactly mimicked by those of a more systemic peripheral neuropathy, which is why the hunt for cause may be long, expensive, and have a lot of dead ends. But take a look at the following, and compare the work-up and tests you've had to these, which are designed to be very comprehensive for neural symptoms:

www.lizajane.org

http://www.questdiagnostics.com/test...ripheralNeurop

Thanks Debs,
The doctor sure did give up. She is a neuromuscular doc that I was forward to after quite a few neuros. She barely listened to me for 5 minutes and already knew it was small fiber. She did the biopsies right away to confirm and rushed me out. I called the office and the tests came back with significantly low epidermal nerve fiber density. She told me she can give me drugs to manage the pain and discomfort. That freaks me out because I want to find out why the heck this is happening and how to stop it.
I've actually had a full spinal and brain MRI because I thought the same thing about nerve impingement. I even went to a spinal neurosurgeon at Columbia for his opinion and he said no way. In the hospital I had a spinal tap and they tested me for everything they could think of. Im being treated by an infectious disease doc on 3 weeks of doxy in the chance that it could be undetected lyme. It is a month since the doxy so I don't think its lyme. It took a year of weird symptoms that I thought were just hormonal till everything just became too bizarre and painful. I still desperately hope that it is a crazy injury to my neck/brachial plexus from working out in ways my body couldn't handle for too long and it will heal.........

Hi Baba,
No nothing that I can remember. Last year I just started feeling strange. My left leg would get tingly from almost any position and I had to walk around to make it go away. Then my left hand had electrical vibrations that would happen when I held the blender top on. Heart palps and low blood pressure when standing started but were not that bad. Sometimes toes and hands would randomly get numb for a bit. Then over the summer it got crazy and everything intensified into nerve pains randomly in certain areas, crazy insane neck pain, muscle twitches, dizziness, confusion at times, and internal buzzing and shaking especially left side of body when lying down. They think because of the high ANA that has been repeated about 5 times that my body is doing this to itself. Now I just have to find someone who wants to try treatment. I have a new neuromuscular doc lined up for after the holidays so maybe he will be interested in figuring it out.
How about you? Did you have a known trigger or autoimmune issue?

Hi glenntaj,
Thanks for the links. I will compare them to my workup.
I also feel that there could be nerve compression. The spine surgeon said that my MRI says no. He says I do have herniated discs 5-6-7, but they are not what could be causing the entire problem. I am also wondering if compression could lead to a positive small nerve fiber biopsy. I am wondering everything. It is great to come here. I will keep reading other stories so I am ready for my next neuromuscular appointment.
Thanks!

Hello Healthgirl,

I'll give you an unfortunate "welcome to the club." Likewise, I've been diagnosed with idiopathic SFN and have had every test under the sun looking for the cause. I've had MRIs of my entire spine as well as my brain, many blood tests, a spinal tap, nutritional evaluation, nutritional sensitivity tests, and a hormone test.

The "buzzing" you experience is very familiar to me. My legs bear the brunt of it, but I feel it all over. When my motor nerves are active, my sensory nerve dysfunction isn't as pronounced, but that's not a helpful remedy when you're trying to sleep.

I do have some glucose issues that don't show up on regular diabetes screening tests, but I have a feeling this SFN could be spinal-related, especially since my symptoms became acute after a planking-challenge hurt my neck. Even though the MRIs show no cause, I really think there's just something going on that's not detectable by the MRIs. You know if 10,000,000 of us are walking around with this, they're missing SOMETHING. If it's not spinal, then maybe it is glucose-related, and some of us who aren't even yet pre-diabetic are more pre-disposed to SFN.

Like you, I'm totally frustrated not knowing why this happening.

Jane

I dont know if mine is autoimmune or not. Finally had a skin biopsy and have sensory small fiber.
I suspect it could be from all kinds of procedures/antibiotics. Did not know I had levaquin until recently.
Thanks for asking.
Hope the new Neuro is helpful.