Just got back from alledged specialist!!
 

I am not sure what to think. The neurologist didn't look at my other neurologists notes, my MRI's or my blood tests. He listened to me at length and looked only at my nerve testing only. He then did a very thorough examination and got reflex responses out of areas (my ankles) where my other doctor didn't. There was only one test that showed any possible damage on my right foot. It was a vibration test. He told me it was pretty insignificant. He had me walk on my heels, on my toes, bend and touch the ground, and did muscle testing. After all this he said my sensations are caused by crossing my legs and being thin and I needed to stop crossing them. He also said I had carpal tunnel in my hands but nothing major. He recommended a brace I could get for my wrist if I wanted to.

It seems over simplified to me. Also, it would be hard for him to know if my muscles are weaker as he has no frame of reference. Prior to all this my legs were very strong as I worked out and also danced ballet. And bending over to touch my toes is crazy easy for me as I am super flexible. So, I do not know what to think. If I drank this would be a good time to have a few.:confused:

Also, he said my twitches were benign fasciculations not PN.

Any thoughts? Please.

Have you ever explored HNPP? (Hereditary Neuropathy with Liability to Pressure Palsies). Here is a good site telling all about it.

http://www.hnpp.org/

I mention this since you were told not to cross your legs. Just throwing it out there.

It's not anywhere in my family but thank you for mentioning. It's always good to get information.

Just got back from alledged specialist!!
 

Hi Pinky Nose, I hope he is right that is good news. Curious why did you change neurologist. It is puzzling his diagnosis. How long ago were the other test taken. He is right about crossing legs that causes me to have symptoms, but I do have PN.

I had mitral vale prolapse and. Recent cardiologist don't hear anything. It took care of itself. Then a. Nurse said to me you don't get rid of it.

All I know is it does not bother me any more so I go by the way I feel.

When


Uglogirl

I put specialists in the category of auto repairmen. Once in a great while, if you are very lucky you'll get a good one. :winky:

I went to him for a 2nd opinion. My neurologist referred as he is a specialist in PN and regarded highly in the medical community. He's one of the top neurologists at a teaching hospital so I foolishly thought he'd be open minded. He spent at least an hour with me and was thorough in his exam but it baffles me why he didn't bother with at least my MRI. I hate to blame it on his age (74) because I'm not far behind but I think he may be set in his ways and has a bit too large of an ego. Hard to know for sure. Time will tell. Meanwhile I'm trying hard to break the habit of crossing my legs as I know it's not good for me regardless.

Well, you have the MRI report...did it show anything important? If it did, then did you at least bring up the findings to the neuro? That may have sparked some interest in him looking at the MRI.

I haven't recently read your previous posts...what (summarized) are your primary symptoms?

Since your neuro referred you to this guy, then I'm assuming he felt you HAVE PN. If you are comfortable with his Dx, then I wouldn't worry about what this new specialist has to say. He seemed to draw conclusions pretty quick without any testing (other than exam).

If he is correct, then yes, it would be good news. But you seem to indicate that your symptoms go beyond some twitches and minor sensory problems from crossing your legs (which would be easy to Dx if they ONLY happen when your legs are crossed).

Time
 

Time will tell. Are you going to talk to your neurologist about his diagnosis.:winky:

Enbloc: after he looked at the nerve testing and did his testing exam he told me that i did not have any nerve damage even though it was indicated on the nerve test. That became his logic for not looking any further. I did tell him about the MRI & that the referring neurologist wanted him to look at it because he thought it could be the reason for symptoms. But without nerve damage the symptoms lost their importance to him. I think that's a problem with doctors. Without tangible damage they can't commit to the disease, but I believe it takes time for damage to show. Am I suppose to wait for it? I am beyond frustrated. Anyway, I have all the usual SFPN sensations: burning, tingling, pins & needles, buzzing, random sharp pricks. itching on feet, legs, hands and mouth. Evening & nights are the worst. I will be going back to my original doctor who does feel I probably have SFN although he hasn't made it official.

Uglogirl: yes I will tell my primary neurologist exactly what happened.