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-   -   experiencing symptom but Dr says No neuropathy (https://www.neurotalk.org/peripheral-neuropathy/153957-experiencing-symptom-dr-neuropathy.html)

drwk 07-20-2011 06:14 PM

experiencing symptom but Dr says No neuropathy
 
Hi, I just visited my neurologist today. He looked over my emg and vibration test I had previously. He also did multiple tests on my balance, strength, pin prick sensation, and discussed my history. In the end he said my tests were all normal and I did not have neuropathy. I am confused bc I have some tingling, burning sometimes, and itching sometimes of my hands and feet. I have not had any numbness. My blood work is good. He is going to test my vitamin d and glucose again while fasting. I just don't know what to think. I know there isn't something right with my body. Has this happened to anyone or what should I do? Please give any suggestions.

daniella 07-21-2011 03:57 AM

Hi I just went back to your old post and you were supposed to see an infection doctor. Did you? I forgot but have you been checked for auto immune conditions?
When I had my first set of NC/Emg it did not show PN. Then a few months later a repeat with a test called an ssep and it did come back with PN. I also have RSD as well though. Are you able to go for another opinion? Did your neurologist give you any feedback on what steps you should take now?

Rosie33 07-21-2011 04:18 AM

Quote:

Originally Posted by drwk (Post 788373)
Hi, I just visited my neurologist today. He looked over my emg and vibration test I had previously. He also did multiple tests on my balance, strength, pin prick sensation, and discussed my history. In the end he said my tests were all normal and I did not have neuropathy. I am confused bc I have some tingling, burning sometimes, and itching sometimes of my hands and feet. I have not had any numbness. My blood work is good. He is going to test my vitamin d and glucose again while fasting. I just don't know what to think. I know there isn't something right with my body. Has this happened to anyone or what should I do? Please give any suggestions.

My EMG showed no PN also, and the neurologist told me that small fiber neuropathy sometimes doesn't show up in an EMG. I know I have neuropathy, and it's idiopathic. I have run the gamut with different tests that all come up negative. I accept the fact that the doctors don't know what's causing it or how to cure it, hence idiopathic neuropathy & idiot doctors! I come here every day, and have found wonderful support from a lot of great people. I've learned a great deal on improving my nutrition with vitamins and supplements which has helped my PN. Until someone here can tell me about a new discovery that's a positive, I will continue doing what I'm doing......good luck to you!:hug:

glenntaj 07-21-2011 06:26 AM

Any primarily small-fiber syndrome--
 
--will not show up on nerve conduction and EMG testing, as those tests can only document damage to larger, myelinated nerves.

it is certainly possible to have neuropathy with normal nerve conduction and EMG studies--I've never had abnormal nerve conduction studies (and I've had quite a few), but my small-fiber problems have been well-documented by skin biopsy, which is still the gold standard for discovering small-fiber syndromes (although it generally won't reveal a cause).

Small-fiber problems can also be picked up through abnormal results on qualitative sensory testing or autonomic testing (tilt table, sweat testing, and the like).

JB63 07-21-2011 06:59 AM

Quote:

Originally Posted by drwk (Post 788373)
Hi, I just visited my neurologist today. He looked over my emg and vibration test I had previously. He also did multiple tests on my balance, strength, pin prick sensation, and discussed my history. In the end he said my tests were all normal and I did not have neuropathy. I am confused bc I have some tingling, burning sometimes, and itching sometimes of my hands and feet. I have not had any numbness. My blood work is good. He is going to test my vitamin d and glucose again while fasting. I just don't know what to think. I know there isn't something right with my body. Has this happened to anyone or what should I do? Please give any suggestions.


Certainly all of the above, but there could be an added component to PN, such as allergy, skin or even vascular conditions aggravating the PN.

mrsD 07-21-2011 07:17 AM

Did your doctor do Tinel's sign on your wrists, and feet?

http://en.wikipedia.org/wiki/Tinel_sign
http://en.wikipedia.org/wiki/Tarsal_tunnel_syndrome

I have positive Tinel's in the feet.

Sometimes if my fingers are extended and I move a certain way, I'll get it down my fingers shooting too.

So I seem to recall something about a bad vertebra in your back?
Has that testing been completed yet?

I went back to your earlier posts, and see a B12 of 474? That is very borderline, and you might try taking some --- 1mg a day on an empty stomach to see if you have improvements. Use the Methylcobalamin form and do at least 3 months. Dr. Snow states in his paper (which is copied on the B12 sticky-- post #70) that he found some people with neuro symptoms and fairly normal B12 levels, benefited from the supplements anyway. Since B12 is so benign you can do this yourself to see if you are one of these types of people.

drwk 07-21-2011 10:38 AM

Quote:

Originally Posted by mrsD (Post 788523)
Did your doctor do Tinel's sign on your wrists, and feet?

http://en.wikipedia.org/wiki/Tinel_sign
http://en.wikipedia.org/wiki/Tarsal_tunnel_syndrome

I have positive Tinel's in the feet.

Sometimes if my fingers are extended and I move a certain way, I'll get it down my fingers shooting too.

So I seem to recall something about a bad vertebra in your back?
Has that testing been completed yet?

I went back to your earlier posts, and see a B12 of 474? That is very borderline, and you might try taking some --- 1mg a day on an empty stomach to see if you have improvements. Use the Methylcobalamin form and do at least 3 months. Dr. Snow states in his paper (which is copied on the B12 sticky-- post #70) that he found some people with neuro symptoms and fairly normal B12 levels, benefited from the supplements anyway. Since B12 is so benign you can do this yourself to see if you are one of these types of people.

Mrs. D and Daniella, yes I just started IV antibiotics yesterday. I am taking 2 GM of Rocephin(Ceftraxone) once a day. They found group B strep in my disc space(discitis). I will be on the medicine for 6 weeks. I am so nervous it will make my neuropathy worse. Is that possible? I have bought a b12 subligual pill that is 2500mcg each. How many of these do I take? Thanks so much for all your help!!!! Danielle

mrsD 07-21-2011 11:44 AM

I don't think the Rocephin has been implicated in PN.

But Strep infection involves protein sequences on the strep cell wall that are similar to some human tissues. PANDAs...is a CNS movement disorder that occurs in children who have strep. The antibodies in our blood stream target the strep and also US.

When the infection clears up, you may find the nerve effects may lessen.

Do a Google search on PANDAs and learn more about how this happens if you want.

Do you know how this happened? Have you had injections back there?

You can do the 2500 mcg ... as I said it is benign. Just take it on an empty stomach for best absorption and results.

daniella 07-22-2011 04:11 AM

I am not knowledgable about some of what you asked. I think it is important to ask your doctor. I remember in the start I was nervous to but now I come up with a note pad and binder. You deserve to get your concerns and questions answered. I would also ask the doctor if they feel this infection could be impacting your nerves and get their thoughts on that.
I always fear things making me worse since it has happened so now I ask my doctor what will happen if it makes me worse or will it. Then I try to weigh th pros and cons and stay in the moment. The worry,anxiety,and fear does not help in this condition. Easier said then done to not though and those 3 words are a huge part of me. I am really working on relaxing though.
Hope you feel better

echoes long ago 07-22-2011 04:26 PM

i dont know how long you have had PN symptoms but it is also possible to have large fiber PN and it not show up on an EMG/NCS for a while until the damage becomes sufficient to be measurable by those tests.


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