slight electric shock feeling in hands

This is my first time to the site. I never really do stuff like this. I am 29, was diag. at age 8 with NF1. I have had the usual stuff over the years, pain in the legs, lots of headaches, nothing really too bad. Today though, at the grocery, I started to feel slight shocks in my hands. It felt really werid. It went away by the time I left the store. It didn't really hurt too bad, it kind of freaked me out because I never felt that before. Has anyone else had that?

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For the last 4-6 months I have had similar feeling=
electric shocks=pins and needles in the hands.
Recently, within the last month it is followed by complete loss of sensation=everywhere . So far, it is a temporary occurence that lasts about an hour. I've had this about 3-4 times now. Wish I could get
some medical care for it, but I am without insurance and social security has twice denied my requests for
medicaid/disability funds.

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Welcome to the site. Some additional things to the previous e-mail: Have severe leg pain and get headaches and seizures.

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Do you have regular MRIs? - I think you need to have this checked out.

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I have pain in my fingers that started out like that. Do you have any sensitivity? For me, just touching certain parts of my fingers is like smashing them with a hammer. I would deffinetely get a doctor to look at them. Be persistant. Its taken me years to get results and I'm still not where I need to be. Dont take no for an answer.

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I have the same pain. I believe that the pain is caused by Glomus Tumors.
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1888624

http://jmg.bmj.com/cgi/content/extract/39/8/e45
I'm just having trouble convincing my Dr. He has sent me for EMG's. Being stuck with needles and beimg shocked. The results have comeback as Carpal Tunnel Syndrome. NF can cause CTS.
The Dr.'s who stuck and shocked me had never heard of Neurofibromatosis.

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thank ya'll so much for all the replies, I hope the best for all of y'all! It's strange hearing from other people with it because I never really talk about it. thanks so much!

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That link about Glomus Tumors was helpful... it said
"The average age at presentation is from 30 to 50 years of age".. I turn 30 in less than 3 months and this was the first time it happened to me.... thanks so much for your help!

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Welcome to the site.
I have pain in my two middle fingers on my left hand. of course it is the hand i happen to write with. I also get pain from the side of my neck where I know i have fibromas all the way down my collar bone and clavical down my arm and into my hand.
i was told that i have a cist in my hand and need to see an arthritis spec. I am also told that i need to have physical therapy cuz a doc thinks i sprained my arm/shoulder and cuz of my posture.
The therapist says that the posture is suppose to affect the claw part of your hand. that is the thumb and the pointer and middle finger.
He thinks that i might have CTS and that i would need to wear a brace, my watch on my right wrist and to see a different therapist.
I'm going crazy cuz it hurts like hell when i dry my hands or put any kind of pressure on my fingers. Hopefully i would get some more help when i see the arthritis spec.

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Somone posted the glomus tumor thing a while back. I discussed it with my doc and I'm trying to get an MRI lined up for my hands. Its the most promising news I've heard in a long time and i finally feel like there's a possible answer for the horrible pain I've been having. Somone needs to compile a study of NF people to give to doctors because I've come to realize that most of them aren't experienced with the mant different symptoms of NF. Since I joined the site I've learned way more than all the doctors ever told me. I just dont think they have dealt with enough NF patients to understand what its really like living with it. Apparently the text books are all wrong too. How many other people have been told "NF doesnt cause pain" by a doctor.

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Thanks for sharing that. I didn't know that NF causes CTS. I have tingeling in hands also and a few months ago the right side of my face began to feel tingely(sorry for the spelling) and kind of numb like. I spent two days in the hospital and they couldn't figure out what it was. I had never been to that hospital and they totally freaked out with my brain MRI because it shows a small neuroma and something like T1? But, it said the same thing that all my others have said so I didn't freak out. Thank you!

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I haven't had that problem in my hands, but I used to get something similar in my right arm, eventually the occurences worsened and spread to my leg, they where like a spasm too and would stop me wherever I was walking. It was when It got to that point I saw a Neurologist for the first time ever.

He wasn't able to pin point the cause, although an MRI scan of my brain turned up a tumor, it was gone on the next scan. He ended up per prescribing me the same medication people take for epileptic seizures. That solved the problem.

Not saying it's the same thing here, but the shocking type sensation went along with the spasms I had.

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Hi;

I was thinking peripheral neuropathy.

Russ

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I am curuious, I'm new to this site now myself. It has been a year since your post, are you still experiencing these "shocks", etc? I have recently noticed similar issues, but normally only while trying to get to sleep. Seizures have hit me occasionally since I was 15, but none within the past 3 years. :) But not much of this shocky/stingy feelings until now.

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I, too have had that awful pain. Since I am unemployed without insurance, I rely on the County system -- and right now, my primary thinks I should see a shrink. She sent me to a hand specialist and they won't do anything about it -- said the tumors will only grow back. Also told me to wear a brace (doesn't help) -- I have changed primaries, and will see her in July, until then, I grin and bear it -- but the pain is terrible -- especially with the thumb nails -- I say it is like someone is shoving bamboo sticks under my nails. (not that I know what that feels like), There are so many aspects of NF, that I wish doctors would realize it and not label us as needing to see a shrink.. The EMG did show carpal tunnel and I was told that surgery would not help. So we'll see what happens in July. But if anyone has any suggestions on how to ease the pain, I would appreciate it.

Thanks

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Here is my 2 cents worth...
I have a tumor (or possibly a baker's cyst) in my left arm pit, when applying deodorant I get a "Zinger" sensation traveling down my arm.

Also, I occasionally get a tingly thumb & forefinger, This I am told is usually associated with carpel tunnel syndrome.....
Strangely, I sometimes get the same tingly numbness in my other 3 fingers .... This I understand is caused by something similar to tennis elbow.

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Hey! I'm also 29, but was diagnosed (NF1) as an infant. Anyway, I would DEFINITELY suggest to you that you have your neurologist/neurosurgeon request a PET scan, along with an MRI.

I have had the EXACT SAME SENSATIONS you describe about 3 times in the past. Each of those times, the pain was due to fibroma "deterioration", or MPNST (Malignant peripheral nerve sheath tumors). Key word MALIGNANT! The first one, I just assumed was normal pain due to NF; and I sat on it for years before getting it checked out. I finally went in for a PET scan and it showed a pretty large malignancy in my lower left leg. I immediately had it removed and the margins radiated. Luckily, I still have my leg... They considered removing it!! However, because they had to remove such a large section of nerve tissue, I now have no feeling in and cannot move anything below my knee (lower leg, ankle, foot, toes). So I have to wear a brace on that leg now.

I learned my lesson. Now every time I feel a "shock", I mention it to my doctor/specialist - who I see 2-3 times per year. She records it; and if I keep mentioning it, she orders a PET and MRI. We've caught the last two MPNST's very early, and the third one didn't even require radiation. I definitely suggest you mention this to your doctor and inquire about a PET scan. Our tumors are quite capable of deterioration.

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Also, if you think it's just pain due to Neuropathy, try to get a prescription for Lyrica - this really helps with my day to day nerve pain/numbness. However, it did nothing to alleviate the shooting electric shocks I now associate with a potential MPNST. Please, get that checked.

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