Latest nero visit // COQ 10

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redhed

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My latest MRI came back with arthritis on the C-4 and C-5. My nero says this explains chronic pain on my left side ( side of face to toe) He also looked at two indents in my thigh. He says they do not look like atrophy caused by ALS. ( I did hit my thigh several months ago but just noticed the indents 3 weeks ago). The indents are painful. He says that the pain is most likely from the nerves regenerating after trauma. He is calling my condition BFS for now and not doing a repeat EMG. ( my last EMG was Oct. 2004, normal with twitching shown. ) He says that the amount of twitching I have would have definatly shown an abnormal EMG and wasting of the muscle if it was not benign. He says he is sure this is not beginning ALS. HE has given me a higher dose of zanax and started me on 300 mgs of COQ-10. I am also drinking green tea ( alot ! :D ) He wants me to work out twice a week at the gym and see him in Nov. ( of course I am afraid to work out knowing that this causes free radicals) I will try anything. Any way, I hope this is good news but I just don't know. Any input would be great. Thanks every one! :? :? :? :?
 

Al

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You have no idea how good that kind of news would be to most of us here. I'd follow doctors orders and wait until November to see what happens. Do what you can. Don't exercise to the point of straining muscles and try not to worry. It's easier said than done but you have to not let the worry consume you.
 

rcharlton

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Re:

[quote:c6913c7b36="redhed"] ( of course I am afraid to work out knowing that this causes free radicals) [/quote:c6913c7b36]

[quote:c6913c7b36="Al"] Don't exercise to the point of straining muscles [/quote:c6913c7b36]

Before the onset of my ALS I was very active and I continue to be - I bike about 100km a week, use a rowing machine, swim, do resistance training, etc. - never to the point of exhaustion - but definately to the point of being sweaty and tired. My ALS does not seem to have affected my legs yet - just my upper body - principally my right arm and hand...

Should I be curtailing these activities?

Thanks...
 

Al

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What has your Neuro or GP suggested? If you are using a personal trainer most of them don't realize the extent of muscle wasting in ALS.
 

rcharlton

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I have spoken to Dr. Zinman, Dr. Gawel and Dr. Strong - all of them tell me that as long as it feels good - do it...

I don't use a personal trainer...

My philosophy is "use it before you lose it"...but I don't want to accelerate the degeneration either...
 

redhed

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Thankyou so much for your input. I am relieved to some extent. My nero is sending me to U of Penn to see DR. Mc Clousky. ( tounge twitching is worse, Indents in thigh a little worse) He is still saying BFS but wants me to go to the ALS clinnic at Penn to be sure.

I hope this CO Enzyme can help some of you . It does ease some of the twitching but does not make it completely go away. It may only be a band aid but it makes me feel better.
 
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Mike27

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Hi folks,
I have been asking for years if it is a good idea to work out. I get a different answer from each doctor.
I think, in the end, Al has the right idea. You can work out but not to the point of exhaustion. Just get the blood moving, keep the joints flexible and you should do fine.

Richard, I go by the same motto, but I’ve come to realize that I won’t improve my athletic performance. I can only maintain what I have to this point.

Cheers!
 
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