Another quick update:

Apparently, I've never been tested for diabetes, celiac, or even the more sensitive Lyme testing. I am not at all impressed with my care up until this point; but I'm hoping this new neurologist is thorough, as the nerve pain in my left foot intensifies.

I appreciate everyone's feedback here and in other parts of the forum, it really is comforting to know that we're not alone (though it would be more comforting to know this pain would subside).

Be well :)

Be sure to let us know the outcome of your next visit.

Yes, let us know. Hope you find an answer.

Kitt

An update:

I've been seeing a specialist at Strong Memorial Hospital in Rochester, NY. She's very thorough and went through a lot of questions / answers with me before recommending me for yet another NCS / EMG with a neuromuscular specialist. The recommendation came in June, the appointment was this past Friday. Because my symptoms are so odd, and my previous EMG did not show much of anything, after the Nerve Conduction proved to be normal, the neuromuscular physician offered another option, aside from the EMG (which he didn't expect to show anything for my sensory symptoms) - an ultrasound of the nerves. Now, because of the small size of the sural nerve, and the rarity of it being affected, no true conclusions were made. However, they did note a small size difference (30% larger in left leg than right) which suggests inflammation.

Because of this, my neurologist called me yesterday and said that she thinks I have sensitive nerves due to my PCOS / B12 deficiency (that I had at one point) and any nerves close to the surface (such as the sural nerve), once irritated, may stay irritated for quite some time. She is not recommending a skin punch biopsy to look for small fiber involvement. She, along with the neuromuscular specialist, believe that further testing is no longer warranted.

I suppose this is something I will be able to live with, though I'm starting to get more pain in my big toe, and now in the ankle of my left foot. But nothing is symmetrical, nothing is super spread, it's all very pin-pointed and nothing is keeping me from performing daily tasks. Pain, numbness... I guess I'm at the end of the road? Including these 2 specialists, I've also seen a rheumatologist and another neurologist, all who appear unconcerned. Initially the concern was MS, but since that's been ruled out, any other concerns seem to surround pain management rather than finding a cause. Is this all there is? I suppose time will tell.

Did they explain how long you could be potentially dealing with this?

They did not, as they can't predict how long nerve pain will last. Also, because there is no known etiology, there really is no treatment plan or recovery plan. I just deal with pain/numbness and cross my fingers and hope it doesn't get worse (even though it is getting worse, but hey, guess it's nothing so...).

Hey Gailveronica,

You sound fed up and in increasing pain and the doctors are not taking your symptoms seriously. I hear you. I have been there.

You have painful symptoms, and the medical world has provided no known aetiology, no treatment plan and no recovery plan. That's pretty much, more or less, the situation of everyone with Peripheral Neuropathy bar a few clumsy painkillers.

I came to the conclusion that I had to make my own recovery plan. I had to take responsibility for my own health and wellbeing. This is my plan in a nutshell.

1. Adopt a positive mental attitude. Abandon self pity and victim mentality.

2. The body will heal itself wherever possible. Create the optimum conditions to maximise self healing. Research. Research. Research. This act alone will help create a sense of hope and direction. Consider:-
a) Diet and Nutrition
b) Exercise
c) Rest and Meditation
d) Cultivate positive friendships

3. Gratitude. I learned to count my blessings. There are worse things that could happen. A lot worse. My symptoms are not the end of the world.

4. Develop a sense of humour about my condition. Don't take myself so seriously.



Oh and don't cross your fingers, that'll make things worse!!