Trishann, I've got several things going on with this. My GP has already told me of several things that he says are related to PN. I've got it in my feet, ankles, hands, lower legs, and then I get episodes in my upper legs. Its confusing and I've already seen one neuro who didn't help or explain anything at all. Having to wait and wonder is hard on me. I'm sorry your in limbo too. Have you got a doctor or appointment in the near future?

EEO3: My primary doctor is the one that has been helping me. Before dx with neuropathy, my doctor did a blood test to detect inflammation, did an annual check for thyroid, sugar and etc, which was fine.

Now dx with neuropathy by EMG/NCV test, the doctor also checked my B-12 level, which again the results are fine.

My husband thinking maybe a neuro. may be more help, but I don't know if they would be or not. My doctor gave me Lyrica for it and I was already on Hydrocod/IBU before dx. because of the ankle/leg pain.

But this huge spot of numbness on my upper leg is spreading now, it just feel really strange.

EEO3 stiffness is definitely a big issue with me with neuropathy. I think this stuff also has flares. Days where it seems to be a little bit better and then it strike you down.


ECHOES LONG AGO: Thanks for explaining about the level issue.

Trishann, the upper legs have presented in two different ways so far. My right leg went totally numb and when I tried to use it, it failed me and I fell. The left one gets a spot of pain while I'm exercising, which leads to weakness, bringing me to an abrupt stop. I have to wait for it to pass to carry on. Its also hard to explain the way it feels as its quite unsettling. This happens almost every time I exercise.

I was also diagnosed via EMG/NCV and I have seen one neuro who was useless. I'm waiting to see another one and hoping he'll be better than the last. (sorry to all if I'm repeating myself here)

B12 of 'fine' isn't a proper dx.
You have to check the numbers on the testing,
If your B12 is 600 or below, you are suspect.
Many docs are out of date and think 400-500 is 'normal'
That's 20 yrs behind the time from old medical textbooks.
I keep mine above 1000 with supplimental B12 everyday.

EEO3 so sorry to hear that your neuro. was not much help for you. Hopefully your next visit to a new neuro will be able to help you. I don't have much helpful information for you except that Lycria and the pain medicine does help at times but other times nothing seems to help. Please let me know what you new neuro have to say.


Nide44 I think my B-12 was 645. Wonder why doctors are not up to date with this information.

Had to pop in on this thread. 3 years ago, before all my symptoms started to ramp up like crazy my b12 number was 362. I was told to take a supplement once a day. Was rechecked twice and told it was "fine". Never did get copies of those blood results. I asked for them but they were not part of the test result package I received. Hummmm.

I was also told that number was borderline low. At the time my folate was extremely low as well

Because they went to school 15 yrs ago, with texts that were 5 yrs old,
and haven't bothered to update themselves.
A hospital w/a large neuro dept, affiliated with a University, with a research dept in PN -is the most up to date on the problems.