Recent content by Hi Skyehy

Thanks for all the replies. Guess I'll just go on with life and make the best of it. At least my boys are healthy. I don't have the energy to keep searching when all tests have been done. This last doc was #4 or 5. I've lost count now. Kate

I'm back after seeing the best neuromuscular specialist in OK at the M D A/A l s clinic. He did thorough blood tests, mri's w/wo contrast on brain, neck, thoracic area, EMG, etc. He admitted even he is stumped. He can't find anything wrong! But yet I can't walk and am partially paralyzed. He...

Sometimes it even takes YEARS to get diagnosed. It took my uncle several years before they were sure he had a. L.s. And sometimes we don't even have an identifiable mnd. I'm also surprised the doc said that diagnosis so quickly!

Thanks, everyone!

The doc (Dr. Kershner in OKC) says I have no leg reflexes, partial paralysis r. side of body and a very complex neurological disorder...though prob not A l S! He was very interested in my eyes. I had a hard time following his hand motions. He took 15 vials of blood and is testing for everything...

You guys are great. Thanks for the understanding words. I'm ready for another nap now. :)

Hopefully this is the right place to vent. I think about my a l s specialist appt. Thurs and I'm getting really afraid. Afraid even a specialist won't know what's wrong with me. I've had a lot of tears-even just watching silly commercials. Not sure if it's just stress and/or all these body...

if I could even stand up, not fall over and then take a couple steps...I would jump for joy (but I can't jump either.) Anxiety meds could be helpful to you. Best wishes and please enjoy your life!

I had viral meningitis when I was 14. Symptom onset in early 20's. I often wonder if there's a connection there too.

I totally understand the runaround! It's frustrating and aggravating. Kenny is right though. You have to hang on. I'm in the same boat. Seeing an a l s specialist (finally) on Thurs. 13 years undiagnosed here and slowly getting worse. Last neuro said my weakness was "impressive!" I'm not...

Hi Susan, I saw your answer that Dr. Beson is an ALS specialist. I didn't want to freak out in public but I am-freaking out. Does that mean my neuro thinks I have it? I am scared. Kate

A novel exon 3 mutation (D76V) in the SOD1 gene associated ... ... mutation (D76V) in the SOD1 gene associated with slowly progressive ALS. ... dismutase (SOD1) gene in patients with the familial form of amyotrophic lateral sclerosis ... A novel ex... [Amyotroph Lateral Scler Other Motor Neuron...

Links coming, Brooksea. Got moderated.

Links coming...got moderated. Here's another one... A novel SOD1 mutation in a young amyotrophic lateral sclerosis patient with a very slowly progressive clinical course

Yes, Brooksea. I am thinking of familial ALS because my two uncles had the disease. I'll find some more links. Actually found this at caringforcancer.com: The Leading Caring for Cancer Site on the Net In addition, a rare form of autosomal dominant ALS (designated as ALS4) has been mapped to the...