I have axonal sensorimotor neuropathy diagnosed by EMG in my left foot/lower leg. (I have both long-fiber & small fiber involvement.) I have sensory involvement on my right foot/lower leg. I have twitching that comes and goes in my left foot, especially the inner arch. Better in the morning and increases throughout the day with activity. I also have benign fasciculations that are random throughout my body. These are variable & I find if I am well-hydrated and taking magnesium they aren't as frequent.

My neuropathy is idiopathic & frustrating because I have many things that could be causing symptoms. I have spinal issues both cervical and lumbar, I have a Chiari I malformation (7 mm) and I have autoimmune history on my mother's side. I had a low-positive ANA/CRP, also have some antibodies to receptors that affect autonomic nerves. And...I have Herpes Simplex type 1 since childhood, also test positive for Epstein Barr virus. Last thing I can think of, I took 6 months of INH after a turberculin skin test was positive back in my early 20's. Pretty sure I've taken Cipro before for UTI's I used to get quite frequently. My point is, I have lots of things that may contribute, but no identified cause, so I am left as many of you--symptom management. My neurologist is kind enough to see me a couple of times a year for follow-up.

Interesting about the plexius neuritis; as I have been dealing with a frozen shoulder since Nov. It's much better now, but I had a manipulation under anesthesia and loads of PT. Much better mobility, but still painful. No answers as to why I have this, it is not an injury, rather I woke up with it & it froze within about 2 weeks time. Cause is idiopathic. I am beginning to HATE that word.

This sounds just like me. The year I developed BFS (July 2013), I had a UTI every month for 6 months prior to that, taking Cipro and other meds. When I took Cipro, my twitching turned into what I can describe as mini seizures all over my body, everything was popping and jerking, much beyond twitching. Once Cipro was out of my body, things died down to "normal" twitching. I also have low positive ANAs, I have 2 herniated discs in my cervical neck. I have Herpes 1.....

Was the Epstein Barr virus a simple blood test? Who did that test, a neuro or your primary care doctor?

By the way, two neuros declared the neuro who diagnosed me with plexus neuritis as WRONG. They don't think I have it, but agree I could have something inflammatory going on. But they are not trying to find out what.

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By the way, two neuros declared the neuro who diagnosed me with plexus neuritis as WRONG. They don't think I have it, but agree I could have something inflammatory going on. But they are not trying to find out what.[/QUOTE]

After dealing with various doctors over about 9 months now, I think much of this comes down to resources. The doctors are so busy. Where I am, it takes about 4 weeks to get an appointment with a general neurologist, who it seems is really only there to screen you to determine what sub-specialist you need to see. Then it takes 4 months to see the sub-specialist, who will do tests that primarily see if you have significant motor deficiencies. If you have a pure sensory neuropathy, they may not find any obvious physical symptoms.

So, if you have something like SFN, there are so many possible causes (it seems like hundreds), and so many tests that may have to be run to rule out each one. Then, if they find the cause, there's a good chance they won't be able to do anything about it anyway (other than pain treatment). So, it seems like they just don't want to spend the time and money, when there's so many other patients waiting to be treated.

I don't want to sound too negative on the doctors, I think they do the best they can. But just like everyone else in the working world, they have to prioritize things. And in the world of neurological problems, sensory neuropathies aren't that high on the list.

In my case, the neuromuscular specialist said he couldn't find any significant physical signs of PN. So, to "reassure" me, he said that whatever I had might be "uncomfortable and inconvenient" but he didn't think it was anything that would be fatal or disabling. (For some reason, I didn't feel all that much better after hearing that.)

This is a very good summary of the attitude of most neurologists. In my case it is sensory motor, painful and disabling but not life threatening, so I was released by both neurologists and told to be glad it wasn't ALS.

@susanne, I think this is general attitude of most overworked, "welfare" doctors, they are less investigative than private doctors, or insurance based docs, because they are paid so much more to do thier job, and they dont even do it as much as other docs.

I have to disagree with you, neuroproblem. While your grammar is confusing here, it appears you are saying "welfare" doctors make more money?

In general doctors who take "welfare" patients tend to make much less money than private pay doctors. This is why many good doctors are no longer accepting medicaid patients (and even medicare now).
Many HMO's do take medicaid or medicaid sponsored State insurance plans. These have many rules internally for testing, and medication formularies to curtail costs or deemed unnecessary treatments. So in effect, people who have one of these plans will be less tested and not using the most expensive drugs for treatments. Usually the formularies are determined by the clinic or state depending on reimbursement figures and costs.

I apologize if I misunderstand your post. This being a written format, grammar is important for understanding your postings.

These were highly paid private doctors, one the head of the EMG department at a large hospital, the other an important neurologist at Johns Hopkins. At the time my insurance had very few restrictions on tests, treatments and medications, and I was offered further genetic testing and a spinal tap but assured there would be no change in the treatment or diagnosis so I elected to let it drop as there seemed no point in further testing, and neither doctor felt that an ongoing relationship would be necessary. Once they know they can't help you they lose interest. I think it is more related to feeling it is a waste of their time and skills than money. My local neuro even said she would be taking money "under false pretenses" if she continued seeing me.

I think every patient as the right to fair treatment, whatever their condition is, from a cut that gets infected to a paralyzed arm to MND. I can't believe that 3 neuros, of which one is a professor, cannot tell me why my arm is damaged. Or that they can't agree. By the way, two of the neuros (one is the professor) were private neuros, meaning, I paid them for all of their time and all of their tests, so resources can't be an issue there. I did that because I felt like the 3rd neuro (the one that goes through my insurance company) was rushing me and didn't take enough time.

It's really frustrating when you can't get a definitive diagnosis.
But, it seems neurological disorders in general are very difficult to diagnose. Often, there are no lab tests, MRI scans, or surgeries that can tell the doctors exactly why your seemingly intact nerves are not functioning properly. Even the symptoms (such as pain) are difficult to interpret since they can't be physically measured and rely on the patients description. So, all the doctors are left with is making "educated guesses" based on your history and symptoms.

Hopefully there will be breakthroughs in this area soon. Unfortunately, it will probably be too late for most of us to benefit. But, at least our children might have access to better diagnostics and treatments in the future.

When I first had strange neuro problems 30 years ago that were defying diagnosis, my neurologist at the time apologized to me. His near-exact words were, "I'm sorry I can't give you a definitive answer on this. Neurology is where modern medicine was about 200 years ago. We have a long way to go."

Apparently another 170 years, and we'll stand a chance.