Thank you all so much for the advice. I am trying really hard to look at the positives and tell everyone that I cannot think about what I cannot do now, I have to concentrate on what I can do–which is still a lot especially since, fortuantely, my world more evolves around thinking than physical effort. When I read these, at first I thought that there IS a lot of vision concerns out there, even though there is not “official” reporting of it and for a number of people, the vision concern is really persistent. But if you think of it as Julie says, I can still read and in two months it has not gotten significantly worse, just ups and downs, so this is probably more important to hold on to. Right???

In answer to the questions Kelly raised. I did have an MRI of the brain and whole spine at diagnosis. I did not say but I had had arm pain/impingement for several months before onset and people thought that there was something in my neck in the spinal cord to tie together arm pain and new onset trouble walking and the paresthesias (plus I still had reflexes). I had another MRI of neck spinal cord and EMG a month ago because of the persistent trouble walking, the fact the left side is affected more than the right, I was getting worse, and the MRIs at the beginning had a subtle abnormality. The last MRI was okay. The EMG was read as stable (although the nerve tested in the arm was affected (not before), one nerve in the leg was a little better and one a little worse making the conclusion that it was basically the same).

For Homeagain, I am doing PT, but do not have a lot of tolerance. Mainly she is helping with trying to walk as normally as possible so I do not create new problems. Recently, the nearsightedness of vision in my right eye changed a lot on testing after being stable for years and years. I got new glasses, but this did not help. Like most almost 50 year old people, I have farsightedness from “old age” as well as nearsightedness for which I have worn glasses for 40years. I now wear the continuous bifocal type glasses. The blurriness is with or without glasses on.

Thanks for the advise from many to rest. I have been trying. For the last 5 days, I have been really careful to not walk more than 1200 steps, but I still feel like I have been run over by a truck. I feel worse than last week. No one has commented on the time it take to recover from worsening of the fatigue, but it worries me that fatigue gets so much worse and lasts so long. Over the months, I get a little better and then worse and it does not really seem to correlate with overdoing, but life is complicated and there is so much I want to do, that I am sure that is a significant part of it.

I have two questions to add.
1. Can people comment on the time it takes to recover from the bad fatigue after doing too much?
2. Can anyone comment on how you practically can make a balance between keeping muscle strength and not overdoing it?

It is truly wonderful to not feel so alone in this and to have a place to ask the questions that so concern me. Thanks for you patience with my wordiness. Again, God bless you all for your wisdom and kindness to each other.

Deannie
With hope for cure of this disease.

Hi Guys,
Your quick responses are very nice. I get an upbeat feeling from them, which is good because I didn’t sleep well last night, and I think I can tonight thanks to you. I will take the advice and sign up for the lit pack from the website.
Meanwhile, I guess you are telling me to just go ahead and love my Mom and think of her often, and stay in touch with her….so….. I will.

Thanks again!
John Nasshan