not sure where to go...

[Gypsyrose4]

hello all;

I am new to BT and to the confuzzled world of neurology...

I was Dx. with peripheral neuropathy back in August, 2007. Along with the numbness, burning, lightening toe zaps and other weirdness in my feet and now my arms/hands, I am also dealing with Bilateral foot drop and spasticity.

On clinical exam I show hyper-reflexes in both legs and arms. Ankle clonus,
I failed the romberg's, walk like I'm drunk. I use a cane to walk any long distance. Does this sound like PN?

All my blood work has come back normal. I've had complete MRI's twice that are unremarkable.

my neuro believes there is more then just PN going on here. He thought MS, but is frustrated by the clear MRI's.

Where do i go from here? Any advice is well appreciated.

[annelb]

Have you had your B12 checked. If so, what was the level? There is no perfect test for B12. Testing B12 in the serum does not tell you anything about the B12 available in the tissues. This recent article recommends treating neurological problems with B12 even if testing is "normal". Besides that, the "normal" range may be set too low - I know doctors who use 500 or 600 as a cutoff instead of 200. http://www.ncbi.nlm.nih.gov/pubmed/16814909?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum


You may want to read this if you have PN. You can read the full text, but you will have to register - registration is free. Neuropathy associated with gluten sensitivity (http://www.ncbi.nlm.nih.gov/pubmed/16835287?ordinalpos=4&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum)

Another article by Dr. Hadjivassiliou Gluten sensitivity as a neurological illness. (http://www.ncbi.nlm.nih.gov/pubmed/11971034?ordinalpos=13&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum)

I was diagnosed with PN many years ago. I went on a gluten free diet 4 years ago and have had wonderful improvement in my symptoms. I know they are not the only cause of neurological problems, but neither B12 nor gluten sensitivity(not just celiac disease) should be overlooked.
Anne

[Gypsyrose4]

Hello;

Thank you for responding and for the links. I have an appt. with my neuro in January and i will discuss this with him.

regards;
Karen

[RLuckyL]

You might want to check out the testamony of Rev. Mother Dolores Hart (who is a spokesperson for the Neuropaty Assoc.) on the web site:

http://www.thankfulhands.com/

[annelb]

Hello;

Thank you for responding and for the links. I have an appt. with my neuro in January and i will discuss this with him.

regards;
Karen

I hope your neurologist is open minded. Wish you well,
Anne

[crunchy5]

When I had my wreck in '93 I had a closed head trauma, but I had also fractured my odontoid. I started working, driving etc. Then in '03, I fell and went totally numb. The break was tough to see on any kind of film. They did an open-mouth x-ray beleive it or not. The odontoid had formed a fiberous union. My neuro said "you look like you have cerebal palsy," Maybe look for something pinching the brain stem. I had the constant tingling arms, hands, legs and feet constantly. I'm new to the board, and yours was the first message I read. I'm a tbi/broken neck (halo for 7 months) survivor. I went back to school and got a psych degree, my CBIS, and COTA.
crunchy