worried about numbness in both hands

[marieke]

It's only because TM is rare.. 1-3 people per million per year get it. Many neurologists have never heard of it let alone seen a case of it. I was amazed that your neuro even thought of it.
Keep us posted.

[Mare]

Ok saw the Neuro AGAIN and he had the spinal Tap results said there was no sign of MS or virus or anything else that would be the cause so its idiopathic TM. The only thing that was slightly elevated was the inflammation level it was 7 and normal is 5 he said that wasn't bad. He said he can't tell me what caused it, if the tingling, numbness or neck pain will ever go away, so he gave me lyrica to try. He said he can't say if it will happen again but it won't be in the same spot if it does which is a good thing. He said at the level C2 if it had been bad it would have killed me so I was very lucky. He also said he can't say it won't lead to MS down the road. He will do another MRI at the end of April to see if the inflammation has gone down. I asked why I wasn't given steroids or anything at the start of all this? He said my symptoms were mild and that even if I had gone to the hospital they wouldn't have given me anything. He still wants another neuro oncologist opinion so he is taking my MRI films and tap report to the neuro oncologist at JFK but he says he and all the other doctors didn't think it was a Tumor he just wants to make sure. Funny when you mention having a child with BPI they treat you differently, like hey she might really understand what I'm saying and ask questions and expect logical answers. Thank You all for the support and information you have given me like I told kathy most of the time I got more info from all of you then from the doctors, So now I wait and see what happens down the road I can handle that. Again Thank you all and God bless. Mare

[marieke]

Mare,
The only thing that was slightly up for me too was my ANA level... but that is so very common. They would not have found a virus at this point anyway, stupid that he mentions that he did not find any now.. DUH! It's been too long! All I had was a slight cold a week before my TM hit and I had to think really hard if I had had one. They figure it was viral induced, but really they are not sure.
Good luck.

[Mare]

See the only thing I had before it hit was the surgery on my arm. I just pray that this is what it is and it doesn't come back I have had so many surgery's and things wrong with me in the past 4 yrs my husband thinks I married him for his health insurance. Mare

[Mare]

Yes I beleive he called it the ANA level He has the results I have to get them from him next week when I get my MRI films back

[patpxc]

I had surgery for spinal cpmpression at C4 and C-5 3 years ago and still have a lot of numbness and tingling. I also have had surgery for ulnar nerve entrapment. It has come back and my shoulder and forearm ache a lot. My hand also goes completely numb --well 3 fingers and the palm.
The other thing I hacve is erosive arthritis. I had a test called HLA B-27 and it was positive. It is directly realted to ankylosing spondylitis--but I don't have that. Could be you have something that the Dr's know nothing about. Sometimes I think it is a combination of the BPI and other muscular,nerve things that just haven't been investigated.
I hope you feel better. Take care of yourself.
Pat

[Mare]

Hi Pat

When you had your never entrapment did they move the nerve??? mine was moved so it won't happen again but 6 months later and I still have alot of tenderness and weakness. I don't have BPI my 15 yr old son does I'm just falling apart in general. I'm still not sure the doctors know what wrong with me for sure I think they guess alot.
Mare

[Mare]

Marieke
Do you know anything about lyrica my doctor gave me a script for 50 mg 3 times a day for the TM neck pain and said it would help with the tingling I took one dose and an hour later my vision was very blurry and my right eye hurt like I had scratched the eyeball is this a side affect also the pain stayed and added a BAD headache
Mare

[marieke]

I take 75mg in the morning and 150mg at night... the 150mg makes me very tired.

Lyrica may cause drowsiness, dizziness, blurred vision, or lightheadedness.

most COMMON side effects persist or become bothersome:

Blurred vision; changes in sexual function; constipation; dizziness; drowsiness; dry mouth; gas; headache; lightheadedness; stomach pain; trouble concentrating; weight gain.

Seek medical attention right away if any of these SEVERE side effects occur:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); bloating or swelling of the hands, feet, or ankles; changes in vision; confusion; fast or irregular heartbeat; fever; inability to control urination; loss of coordination; mental or mood changes; muscle aches, pain, tenderness, or weakness (especially if this occurs with a fever or general feeling or discomfort); speaking problems; sudden, unexplained weight gain; suicidal thoughts or actions; unusual tiredness or weakness.

[Mare]

How long do you have to take it before it works I felt all the side affects and the neck pain continued. I used to take neurotin but the neuro said this was better I was up to 2500mg a day for what doctors thought was fibromyalgia. Will this make the tingling go away or do I have to learn to live with it?? its hard since it affects my hands I'm always dropping stuff due to the numbness I'm currently in OT from the arm surgery but she is working both arms she says they are very weak. Mare