Could this be Peripheral Neuropathy? If not, what?

[Bec]

I have had numbness and tingling in my hands for up to 9 years. I first recall it when my almost 10 yo son was a baby.

At first, the Docs thought it was Carpal Tunnel. Turns out it wasn't.

It has progressed really slowly over the years to the point where I can just stand there and my hand gets tingly.

I don't have the hand strength I use to have. There are some jars I can't open now. I am only 44 yo. I didn't know if that was part of the aging process or not.

I notice most of the symptoms with my arms and hands at night.

I use to alternate sleeping on both sides.

I haven't been able to sleep on my left side for over a year. When I sleep on that side, my arm goes numb and the arm hurts. It hurts to the point it wakes me.

So, I started sleeping on my right side. Probably 3 nights a week, I would wake with my left hand numb. It was laying on my hip. I wasn't laying on it. It just went numb.

The Doc checked my blood pressure to make sure I didn't have a pressure difference that could indicate a clot or thinning arteries. Not the issue. The hand / arm isn't cold when this happens. It just get tingly and numb often to the point of pain.

A couple of months ago, I started having the same trouble with my right arm. I can't sleep on that side at all before my arm starts to hurt and go numb.

I have quite a bit of aching in my right elbow. If I accidentally sleep on that side in the night, my right elbow hurts more than anything else on the arm. I didn't do anything to injure it.

Most of what I notice during the day is weakness when I try to open things. And I can't use my right arm to hold a phone up to my ear because my elbow hurts.

Ideas? Thanks for the assist.

[suse3349]

Hi Bec,

I can't give any ideas of a possible diagnosis, sorry.
It might be time to get a different doctor; I would think a Neurologist.

Have you had a CT Scan, MRI/MRA, or PET Scan?

suse

[Bec]

I saw a Neuro. She was no help. She didn't listen to me. Prescribed meds I told her I couldn't take. Didn't listen or change it when I told her I couldn't take them.

I told her about my arms. She took my blood pressure, shrugged and started talking about the migraine meds I can't take again.

I called her later and her nurse was really slow to call me back. Come to think of it, I don't know if she did call me back.

I don't have much regard for Neuros. Maybe I should talk to my sons Neuro.

[dahlek]

the option of getting a second opinion could help? Try and work with these folks by getting copies of all your tests & records so far. Borrow any xrays or MRI's and get that second opinion, or third opinion. If you have insurance the co-pays are cheap when compared to the constant pain.

There are many, many med options used by folks here ....this works well for some...that for others. Few are stuck in the can't take anything category. It's a matter of finding a doc who's willing to work with you trying to find the right balance. Many PN meds are for treating epilepsy, not migraines and while a few overlap..not all do.

To see if you have been thoroughly tested for PN, check out www.lizajane.org put together by a member who has both neuropathy and spinal issues.. Also 'web' up both 'carpal tunnel' and 'peripheral neuropathy' diagnoses and compare the symptoms.

Do talk to your son's neuro, if you respect him/her. Ask about recommendations for a possible second opinion of your problems...Docs never say-but they do KNOW of the good ones, and will probably give you a choice of names. Check them out by again'webbing' up these neuro's names. See what hospitals they are affiliated with, and if they have done or are doing any research-particularly in your areas of concern. Second opinions are also a good way to find out if you like another doc, and can communicate with them well.

Don't despair, there is help out there, it's just a matter of finding it! - j

[nide44]

A neuro at a teaching hospital with a big neuro dept.
and is known for PN research is probably your best shot.
I go to Johns Hopkins, because it is close to home. I'm fortunate in that I could go to others that are nearby too. But I've got a doc who listens.
Lotsa docs to choose from and to get into the mix.
Lotsa docs to confer with one another on best treatment.
You aren't being heard.
You gotta have a doc who listens.
I agree with all 'j' has said.

[rose]

Bec,

Even if they seem mild or completely unrelated.

rose

[LizaJane]

What happens if you have to raise your arms for a while? Like washing your hair, or moving clothing on a high rod? Do they feel strong or do they become leaden?

Can you read up on thoracic outlet syndrome and see if this sounds like what you have?