I agree with Glenntaj about the MRI of brain & neck to rule out/confirm MS and maybe even transverse myelitis (I believe it can present with some of your symptoms and has a rapid onset).

Do you have any other unaccounted for symptoms...like rash (malar rash on face), dry mouth/eyes, GI problems, etc...anything new?

I'm hoping you are not seeing the doctor that told you the MRI wasn't indicated. It was one of the first things my doctors ordered. They also did a spinal tap later to be sure it was not MS.

My symptoms are a lot like yours. Mine came on real fast and are everywhere but the left side of my face.

I've been tested for everything. My skin biopsy was positive. I now believe that this happened from taking Avelox. It took me six years to figure that out. Not one doctor ask if I was taking a medication when this started.

If I can give any advice it is to be your own advocate. Do you own research. Look into your medical records. Push for the MRI if you think it is needed. If the doctor you have doesn't seem to be helping you find another.

I wish I could say it I got better for me. It didn't but it did get more tolerable. I think there are people here that got better. Most of the time I grin and bear it. In the beginning I never thought I would be able to say that.

I do meditation, pray and come here. People here understand. It is so nice just to talk to people who are going through this.

Good Luck!:hug:

Have tried :
Gabapentin
Amitryptiline
Prednisone
Lyrica
Cymbalta

I have many different break through pain meds but they cant be taken all the time. Cymbalta makes me really nauseas and sleepy so far. If i cant take this one, ill just give up on oral meds, you're right, they all suck.

Was tested for rheumatologic explanations lile lupus etc. Negative ANA and RF
No other symptoms since this all began. In the spring and summer months this year i had excruciating lightning zaps of pain that shot down from in front of my right ear down towards my jaw, sometimes it would go horizontal towards my eye. Ive never been a headache person but these only lasts seconds. Made the mistake of telling my doc i thought i was getting headaches. He instantly pushed them off to the side, said it was stress and tension headache from school. Wasnt really my head that hurt tho, it was my right face. Didnt bother to push the matter. He wrote Rx for flexeril for my back/neck and headaches and never bothered to evaluate my back.

That same doc said he didnt think a head MRI would help, he was convinced i had small fiber ( this was bedore my skin punch bx with my next Neuro). I brought a friend with me to a follow up appointment and we pushed him to order an MRI and he actually got angry. Needless to say, im glad i got a second opinion, although i doubt it will end here.

At my last appointment when my newer doc found the diplopia, he said "I bet you've always had this." And thinking in retrospect, ive had this neuro and eye exam done a ton of times this year, never had double vision before. And at that moment, i was terrified to ask aboyt MS or a head MRI. I had just finish ed convincing him to order the spinal MRIs. Didnt want to push it. I figured i must not have enough clinical signs that would poiint him in the direction of MS, so if he didnt think it was important to rule out, i shouldn't worry about it.

[QUOTE=Aussie99;1097017]Sorry to hear you are not well. There is a phenomenon of post viral or post infectious small fiber neuropathy. Its selective to the small nerves through a process of molecular mimicry. It usually happens after an illness such as flu bug,virus, gastritis, or other infection.

If eyes are involved it could also be a Miller Fisher Syndrome variant.

The good news is that people who have had this have posted recovery over time. So there is much much hope. Although it can be a bit slow... and often times things may seem to be getting worse before they actually get better.

The only thing I want to remind you is to REQUEST "copies of ALL your lab reports,tests,and neurological exams". I have heard too many times doctors saying tests were within normal range but the test was actually ABNORMAL for that patient.

Try to get a copy of your Skin Punch Biopsy and MRI radiology report. You may have to get a 2nd opinion. I find it unusual that you have all these symptoms but you have a normal skin punch biopsy. This does sound like small fiber to me. I am not a doctor but I too have all these symptoms. Mine started during a long bout of Gastritis with H. Pylori infection.

Wishing you good health.
Aussie:)[/QUOTE

Thank you
Before my skin biopsy, both my neuro doctors were convinced it was small fiber due to infectionbut then we got the biopsy results and was negative. Of course there are false negatives.. But my concern is if its small fiber, how come it is not sticking to my hands and feet mostly? I thought most poly neuropathies are distal and rarely go into your trunk.

I'm sorry if you've already covered this (I haven't gone back to read your posts from other threads), but have they done an EMG/NCS? Was it normal?

I have diplopia...but I was the one to notice it, not a doctor. Can you not tell you have double vision?

Well, at least 40% of people with autoimmune disorders are sero-negative, so the negative ANA & RF don't discount AI disease. But, that being said, absent any other symptoms, you probably don't have one. Fatigue (profound), and other symptoms usually appear if it was an issue.

I would suggest you bring up the brain MRI at next visit.

The other thing that may be helpful, is to journal the changes you're experiencing. With rapid onset neuropathies, this can prove quite helpful. Just jot on a calendar when something new takes place...and go back to see what you can document in regards to how this developed and when.

Was there any medication you started (or recently prior) at the onset of this? Toxic neuropathies can also present this way. Many antibiotics can cause wide-spread neuropathies.

EMG/NCS August 2013 on upper extremity - normal
spring 2014- lower extremity- normal

I don't have double vision when I look straight ahead unless I put my finger in front of me and try to follow it with my eyes. I am a medical student, so I know the concept of doing a visual fields exam. I recorded a video of myself doing the visual fields exam and it was apparent when I started seeing double (my eyes go back and forth, not knowing which finger to look at) and it was much higher up. This was almost 1 month ago. This week, I did the same thing, and I can see double vision when my finger is almost directly in front of me.

But looking at people who are further away than my finger is at arm's length, I don't notice the double vision.

When do you notice double vision? I was not taking any medications before my neuropathy began. I had a viral infection of some sort, but I did not take any medicine.

Thank you for your response.

I believe that when the dorsal roots (ganglions) along the spine are involved, that is when the symptoms are more global and not just confined to the hands and feet.

There is a dorsal root thread in the subforum:
http://neurotalk.psychcentral.com/thread147771.html

The dorsal roots may be damaged by viruses (shingles is one example) or toxins (chemo or drugs), or autoimmune attack, and this gives the sensory symptoms. On that thread is a paper explaining that when the dorsal roots are involved, EVENTUALLY the nerves in the periphery deteriorate, but that takes time. So the biopsy if taken too early, won't show that much. Two years later, however, there may be some loss.

People vary in how they repair this damage to the dorsal roots.
Evidently some people lack genetic capability to make the nerve growth factors to do this. Hence their symptoms remain, but for others there can be improvement over time. The Herpes Zoster virus is well known for causing long term pain. Some doctors now think other viruses can also cause similar syndromes.