What the heck is this? MG? ALS? MS? Please help

[Andydjx]

Hi everyone--

This is my first post on the board. I come here looking for advice from people who know more about my symptoms than Dr. Google.

Most of my problems started with muscle fasiculations in Fall of 06. I quickly developed parasthesia, though that has subsided greatly. My biggest concern is my weak muscles. I can perform most tasks fine, but they get weak and fatigued after exertion. When I run, I cannot walk on my heels afterwards. When I play baseball, my pinkie finger stops functioning for about 12 hours. Once I rest, the strength returns.

I also wake up with my pinkie finger and ring fingers asleep, numb and unmoveable almost every night (in both hands, more in the right.) I have a ridge of muscle wasting in my right hand, in the thenar muscle under my thumb.

I also have vision problems. My vision will "flicker" when I go from a dark room to light room or vice versa. It happens most mornings when I wake up, and when I go to the movie, the screen flickers in my periphal vision. I also get floaters, some brief blind spots and I can see my pulse in my eye especially when it beats hard. I also have floaters and visual snow.

I have mild tinnitus in my ears and I get sore spots in my muscles where one area will feel like it was hit with a paintball or something. My foot often catches or scrapes the road when I walk.

At first, I thought twitching + weakness + atrophy = ALS, but so many of my symptoms are not consistent with ALS. Plus I have had this for 2.5 years and I can still do pretty much everything, I just get weak afterwards and have little endurance. I played a game on Nintendo Wii where I had to make a pitching motion over and over and my arm felt like 1000 pounds afterwards!

I had hodgkins lymphoma when I was 12 and got chemo and radiation. I understand that greatly increases my risk for autoimmune diseases, I just have no idea what this is. It doesn't seem to be consistent with any of the ones I have read about. I am relatively young for some of these conditions (27) but as I said, the hodgkins bit complicates things. I have had eye exams, brain MRI and EMGs and everything came back normal. I had a positive ANA once, but I was re-tested a couple of other times and it was fine.

Thanks very very much for reading this and for your time. I would be very interested in hearing your suggestions or ideas.

Andy

[bandrews]

Hi Andy,

It may be that you have symptoms of multiple autoimmune diseases. None of the vision symptoms really sound like MG. But the muscle weakness does. I was diagnosed with MG over 5 years ago. I also had problems with my arms and hands going to sleep at night. I explained this to my neurologist and they said it was unrelated to MG and sort of shrugged it off. I haven't had any real problems with that since treatment of MG. I assume you have seen a neurologist?
_________________
Barry Andrews
Forum Administrator

[Andydjx]

Hi Barry--

I have seen a neuro, but they don't see the muscle weakness so they don't really do anything. They gave me an EMG and it came out fine. I'm thinking I'll go to the batting cages or try for a mile run right before an appointment so they can see how profoundly weak the muscles get. I was worried about ALS, but they strength returns after a while.

This does sound like MG though? Is the treatment really helpful? Honestly, the quality of my life is still good, I just want to know what's going on.

Thanks very much,

Andy

[Ginny]

Andy, it might be helpful if you were to get your Vitamin B12, Folate and
Ferritin levels checked, they need to be more than half the range for good effect, just within is not enough although it makes the medics happy.

The vision problems, floaters, weakness and unsteady gait could all be due to low levels of B12, something which many doctors do not think to check and it needs eliminating.

[rbwalton]

[rbwalton]

[alcyon73]

Your symptoms sounds a lot like cramp fasciulation syndrome. Also, if you have not yet been to a neurologist, you really ought to see one.

good luck