i do not have real diagnose but i got als syndrom(syndrome)

[hyden]

i am suffering of a muscle disorder which i haven't got any exact diagonse for it .it began one day as i was sitting in the classroom while i feel like a niddle  on my righ spinalside (that i find out that one of the classmate has done that) and  spinal shock after that. all my muscle become very red and with poor tension in all over my body.i was scared. as i stand up i felt several times because i did not have any static feet back and strech in all over my body. 4years later i got diagnosed with als syndrom (syndrome) from UCLA. in year 2000 the progression become worse . i felt movig tigling vibration al over my body and when it get to my face it made it nom,alot of none painfull spasm all over.i keep fellind down and tensity of all over the muscle become very low. i felt every day worse i become hospitalized several times. now still i dont have any exact diagnose.i have very poor coordination of my hands ,legs. i have to wear corsets and make it very hard to feel tensity in my body.the only thing i hear it's only ose of all of the joints of  my body . it feels that the muscles donot support the joints very well. so there are alot of disconfort and difficulties that i could not discribe. now i just want to know if any one can help me to what shold i do with it and where should i go to get diagnosed?

[CCF-Neuro-M.D.-CS]

Your case is very complex, and you have been evaluated at a very good medical center. If you are looking for a second opinion, perhaps traveling to another well known academic center, such as the Cleveland Clinic, the Mayo Clinic, and University of San Franscico to name a few would be reasonable. I do not think I could provide any more help. Good luck.

[hyden]

i forgot year 96 EMG showed myotonic dischrges ,NCV normal,and

muscle biopsy showed denervation without reinervation. year 99

EMG showed polyphasic, NCV slow right midean nerve. year 2000

muscle biopsy normal.MRI of brain normal .MRI of cervical spin 1mm boldge c2c3 1.5mm c3c4 2mm c4c5 and 2mm c5c6 otherwise normal. blood test IGM low 20/60 in several years. spinal tab
normal two times. heavy metal urine  test normal.

[Nanna326]

I read your comment on your medical problem.  YOu might have the same thing that I have and that is called RST (Reflex Sympathic
Dystrophy). It is a painful nerve disease and there is no cure.  If your skin turned red and felt hot and sensitive to the touch after your injury then you probably have it.  You need to go to a pain doctor.  I got it from a sprain to my left ankle and it just traveled up the left side of my body.  If you catch the disease within 6 months of the onset it can be reversed.  That is what I was told anyway.  I don't know how they do it though.  I have been going to a Spine and Headache Pain doctor, and have been going to  him for over 3 yeas now.  I have pain now from my lower back down to my ankle and it will not go away.  I have had several epidural injections, facet blocks, heat procedures, etc.  I am also on several pain medications too.  I will have to live with this pain for the rest of my life.  I also have gone to a Accupuncturist and she helped me get rid of the pain from my shoulder and arm.  That might be a good thing to do in your case.  Anyway let me know what you find out.  My name is Terri Airey and my email is ***@****..  Good Luck

[hyden]

thank you terri. i read you comment the thing is i donot have

any pain accept when i am sleep i feel nerve shot that my hands

or my legs jump  and i get headache . the main complain is i do

not feel any strech of muscle it feels like that my muscles are

not connected with each other.and the tendons are weak and it is like that the realation between muscles and bones are

not well.when i walk i have to watch my legs and hans because

i donot feel static feet back and the contraction of the muscle.

i hope you get feel better and get cured. my email ad is  htsb_27***@**** and my name is hyden.
thank you