[podpeople]

Hi:
Tomorrow I am seeing neurologist for the first time in 6 months.
My numbness has been worse especially at night. When I sleep my hands and feet are very numb and my hands feel like they are swollen(but are not)and i can't grab anything with them for a while.
I also have other symptoms like dizziness, eye problems .
My question is what should i ask him tomorrow.
What meds should i ask for if any, any tests? He doesn't seem to be willing to give me any medicine.
These have been ruled out, lyme,diabetes.
Six months ago he said that if my symptoms are not better, he wants to do another nerve conduction test(which I had a year ago).
Why do i need another ncv test? he did not do an EMG test.
thank you

[Kitt]

Do you have anyone in the family who has similar symptoms? Seems like an EMG test would be O.K. to have as well. Here is a site to take a look at:

http://www.hnpp.org/

[podpeople]

Wow i've never heard of this. Nobody in my family has these symptoms,unless there was someone way back that I don't know about.
Thanks for the info.I will look into it.

[Kitt]

You are welcome. The site is very informative.

[Susanne C.]

I also have the numb, useless hands in the morning or when I take a nap. I do have pinched nerves at wrists and elbows but tested negative for HNPP. I do have hereditary neuropathy. The pinched nerves are just a bonus.
I agree with Kitt that an EMG is a good idea, they usually do them together.
Does the numbness in your feet improve as the day goes on? My hands improve unless I overuse them but my feet and legs are permanently numb to thigh level.

[podpeople]

Hi Susanne:
My feet are numb during the day but not as much as at night.
I also get tingling in them and feeling of electric shocks and sometimes like bugs are walking on them.

[Susanne C.]

Originally Posted by podpeople

Hi Susanne:
My feet are numb during the day but not as much as at night.
I also get tingling in them and feeling of electric shocks and sometimes like bugs are walking on them.

Oh, the bugs are my favorite. I get those all over. We walk in the woods a lot since the dirt paths are easier on my feet and legs than asphalt or cement and I am always asking my husband to check for ticks ( there is a joke, and, I believe, a country song in there ). Since my neuropathy has spread I get the crawling bugs feeling everywhere.
The Gabapentin does help me with the burning, zapping, and buzzing feelings, so they are usually under control, I notice if I miss a dose. Muscle spasms and pain from the weakness are much bigger issues for me now, but the symptoms that you describe were my introduction to neuropathy. Clumsiness, odd gait, and poor coordination as a child were earlier indications which were ignored.
Be sure to take a list of your concerns and let us know how the tests turn out. I hope that you find some answers. This can be a very frustrating and painful disease.

[Jon_sparky]

Originally Posted by podpeople

Hi:
Tomorrow I am seeing neurologist for the first time in 6 months.
My numbness has been worse especially at night. When I sleep my hands and feet are very numb and my hands feel like they are swollen(but are not)and i can't grab anything with them for a while.
I also have other symptoms like dizziness, eye problems .
My question is what should i ask him tomorrow.
What meds should i ask for if any, any tests? He doesn't seem to be willing to give me any medicine.
These have been ruled out, lyme,diabetes.
Six months ago he said that if my symptoms are not better, he wants to do another nerve conduction test(which I had a year ago).
Why do i need another ncv test? he did not do an EMG test.
thank you

I used to use my flip phone as a alarm, but my hands would be so numb, I couldn't open the phone to turn off the alarm... I am going to the Neurologist next month. My hands and feet are getting worse too, but my PN has been very slow in progression over the last 28 years. I thought of PNPP, but mine is probably just hereditary neuropathy...
Good luck with the doctor visit! The problem with this malady, they can't just give you a pill to make it better...

[Kitt]

Originally Posted by Jon_sparky

I used to use my flip phone as a alarm, but my hands would be so numb, I couldn't open the phone to turn off the alarm... I am going to the Neurologist next month. My hands and feet are getting worse too, but my PN has been very slow in progression over the last 28 years. I thought of PNPP, but mine is probably just hereditary neuropathy...
Good luck with the doctor visit! The problem with this malady, they can't just give you a pill to make it better...

What is PNPP? Do you mean HNPP which is hereditary also.

http://www.hnpp.org/

The whole site is full of information. There is DNA blood tests for it as well as for CMT and for many others.

[Dr. Smith]

Originally Posted by podpeople

My question is what should i ask him tomorrow.
What meds should i ask for if any, any tests? He doesn't seem to be willing to give me any medicine.

What is it you want to know? If you think about that, the questions should come to mind. If not...

peripheral neuropathy questions to ask neurologist

What do you want/need meds for (specifically)? There aren't many medications specifically for PN. Those that are used to treat it are often for other things that are being used "off-label", and only to treat the symptoms—not the underlying disease. Most of the medications being used to treat PN symptoms have significant downsides. I'm just guessing, but perhaps your doctor is aware of this, and may not want to compound your current issues/symptoms with side effects and complications (like dependence, tolerance) of these medications. Medications are always about benefit vs. risk.

Testing can be expensive, and nowadays many tests must be justified to insurance companies before a doctor can/will order them. Also, not every test available is appropriate/necessary for every patient, depending on the doctor and the patient's work-up. Follow-up testing is done depending on what the results of initial testing reveal. If there is a clue where/what to test for next, the doctor will likely order that test. If not, the doctor will need a reason (in his/her opinion, that s/he can justify to insurance) to test further.

See also: http://lizajane.org/

Doc