Status
Not open for further replies.

TomR1972

Active member
Joined
Mar 25, 2007
Messages
55
Reason
PALS
Country
US
State
Ca
City
San Jose
Hi All,

Ok really need some advice here. If I have hand atrophy on the palm side I can not tell because it must be symmetrical. However on the top side of my hand between my thumb and index finger my skin is extremely wrinkled at 35 I look like a 80 year old. Yes at times gripping papers between thumb and index finger will cause a burn that seems to come on too quickly for the amount I am holding. I do have perceived and what I would belive to be slight real weakness there as well. I can still grab a ream of paper with just my thumb and index finger however. This wrinkled skin really scares me and would like some input if at all possible.

I have an ncv/emg at stanford the last week of this month along with a soma evp which scares the hell out of me. I am being told its a 2 hour test and they give you valium for it. Has anyone had that, just how bad is it. Are they giving me this test because they think I have als even though my dr says i most likely dont? Is he just making me feel calm until the diagnosis? He told me with a smirk even that he can tell als 49 times out of 50 just based off of in office exam. He is one of the head als drs at stanford. I honestly believe that he thinks I don't have it but I am not sure what he basis this on. My only emg/ncv test took about 15 minutes this one will be 2 hours. My symptoms progress slowly meaning affecting different areas but the originally affected areas are better overall. This just doesn't make sense to me. HELP!
 
tom

i didn't think it was that bad...but they must be doing all four limbs and tongue if yours will be two hours...they say that valium might reduce fasics, but i think if it is there, it will show up regardless...the only time i was uncomfortable during the test is when they stuck a needle near my spine, otherwise, it wasn't too bad...lot's of things cause atrophy...i have it too, and they diagnosed it as peripheral neuropathy...good luck...and take someone with you...it helps moral support if doc gets extremely quiet on you(doesn't really mean anything)...also, i found that afterwards, i was quite sore and twitchy so, you might need that extra person to drive you home...
 
thanks

Evoked potential test of the soma variety. I guess they are going to place electrodes on my scalp and shock the hell out of my feet and see if I am awake while on valium. From my reading its used to help determine ALS, yet the dr doesnt think i have it ...hmmm.


No valium for the emg test sorry for the confusion.


Tom
 
:?:i think you could take motrin or something that will take the edge off the sting (scalp-ouch) but call and see...yes, i bet your anxiety level is high...make sure you have a significant other with you during test...alot of things cause atrophy not just ALS...don't put ALS out to the Universe by thinking about it...kick it out of your head and do something fun that will get your mind of stuff...whatever works...mountain biking, movies, s_x...i noticed my anxiety level iwas at an all time high, so i went to counselor to have as a back up just in case i get some bad news down the road...back up plans are good, plus i find they give me new perspective to think about things...good luck, hope this helps..
 
Tom,

I looked evp up on Wikipedia and it looks to me like they will be checking the functioning of your spinal cord?

My husband didn't have this test done.

Good luck!
 
Sounds like they might suspect something else Tom. An EVP from what I've seen is not in the regular set of tests. So there a few theories. 1 They are thinking something else. 2 They are amazingly thorough. 3 They think you have buckets of money and are running up the bill. So depending where and by whom the test is being done I'd pick # 1 or # 2.
AL.
 
Tom - I have EVP done when they suspected MS. It is not that bad at all. I promise. And I would have it done again over an EMG any day.
 
I had the standard EVP done already no problems. But this is a somasensory evp that requires valium to be taken. Thats why I know it will be painfull!
 
Hi Tom, SSEP or Somatosensory Evoked Potential is used to diagnose Multiple Sclerosis. I've been through it. It's not so bad. EMG-NCV was way a lot more painful. My Soma EVP is 54 as opposed to the normal value of P40 in my left leg. Doc is thinking of demyelination. I'm scheduled for another brain and thoracic spine MRI.

Good luck to you. Hope things go for the better for all of us.
 
Sid, this post is 2 years old. Tom hasn't been on site since then. Don't know what happened to him. So, how are things in Manila? My son lives up in Angeles City.

AL.
 
Hi Al.. Yep I've realized that after clicking on the submit button.. Haha.. Way too disturbed and stressed out to notice things. :).

Manila's still the same.. Busy, monster traffic, but still love it anyway.
Haven't been to Angeles but I've heard they have nicer streets. :)
 
Spent 7 weeks over there over xmas 2002. Angeles is similar to Manila but less congestion. Spent a week in El Nido on Palawan diving. Most beautiful place I've seen. Went to Banauie, Subic. Great people. Son married one and they have a daughter.

AL.
 
Status
Not open for further replies.
Back
Top