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-   -   Have you had these after effects. (https://www.neurotalk.org/myasthenia-gravis/189083-effects.html)

edwinlgreen 05-26-2013 07:20 PM

Have you had these after effects.
 
Newly diagnosed after 6 weeks of Ptosis then a month or so of double vision of almost constantly changing divergency for the second eyes vision. I also experienced tunnel vision a few times. I could not read without wearing a patch to eliminate the double vision. Diagnosis made when I tested Seropositive.

The Neurologist prescribed Mestinon 60mgx2 with instructions to do a third each day if needed and prednisone 80MG a day for 2 weeks, then 60 for 2 weeks then 40. He said I could start the Mestinon first if I wanted to since I wanted to see the effect of each.

The first 2 days I just took the Mestinon with virtually no effect, On the third day I added the Prednisone with a very significant improvement the first day. After the second day I have had almost no double vision and still do not now at day 7. I have had just a little ptosis. I had expected the Mestinon to work immediately and for the Prednisone to take a couple of weeks after possibly making things worse first.

Other symptoms have increased or been added however.
My over all tiredness has increased. My chest seems to feel heavier each day. I had a chest CT scan Thursday and should know something about it after the Holiday.

Joint pains have started and is increasing. I used to have joint pain but had become very pain tolerant. Are voluntary muscles involved in experiencing pain? Does this mean I am still improving?

I have had trouble getting in my automobile for awhile now. I am not that tall (5'11'') but I had trouble curling up my body to get in the car (a Toyota 4runner, not a compact car). I don't have that trouble now. Again, am I improving?

Yesterday when I went to eat a hot dog I had trouble getting my jaws to work (not a tough steak but a cheap hotdog). This is my first experience with chewing issues. Once I got past the first byte things returned to normal. I thought the chewing problems increase as you eat a meal. not with me.

Today my joints, particular my fingers almost lock up. As I type this I have to stop my typing every 20 or 30 seconds and flex my fingers. This does seem to increase with use.

My eyelids have gotten more and more tired and heavy even as my eyesight conditions have improved. It happens all day long from the time I wake up not just as the day wears on. I believe That I have been sleeping very well.

So some things are getting dramatically better, others new conditions seem to be added and getting worse. I will call my neurologist Tuesday after the Holiday, I just want to ask if others have these had these symptoms.

cait24 05-26-2013 07:48 PM

Edwin, so sorry you are going through this. An MG diagnosis can be overwhelming.

MG waxes and wanes. So it it hard to separate the normal MG fluctuation with the drug cycles of mestinon and pregnisone.

Mestinon is a very short acting drug. For me it takes a half hour to be effective and starts wearing off between 3 and 3.5 hours after the dose. SO are you experience the worst symptoms more than 3 hours after your last dose? I take it an hour before my big meal so I do not have swallowing issues. I also schedule my physical activities around my mestinon dose so I am the strongest.

Most people take mestinon 3 or more times a day because it is short acting. I take 60 mg 4 times a day and the 180 mg time release at night. Could it be your doses are too far apart and your MG symptoms are breaking through? I would note how long since your last dose when you experience the MG symptoms and tell your doctor. He may have you take mestinon more frequently.

Pregnisone is a strong drug and some people do not tolerate it well. I myself and being weaned off pregnisone and I am down to 35 mg a day now. I think my body tolerated very well and I noted a marked improvement immediately too.

SOme people experience weakness from pregnisone initially and then improvement. As I decrease the dose, I can see an initial increase of symptoms and muscle pain and then after a few days on the lower dose, it starts to subside.

Eye symptoms for me seem the least predictable and show the least improvement.

I hope this helps,
kathie

uncledave 05-26-2013 09:12 PM

Quote:

Originally Posted by edwinlgreen (Post 986979)
Newly diagnosed after 6 weeks of Ptosis then a month or so of double vision of almost constantly changing divergency for the second eyes vision. I also experienced tunnel vision a few times. I could not read without wearing a patch to eliminate the double vision. Diagnosis made when I tested Seropositive.

The Neurologist prescribed Mestinon 60mgx2 with instructions to do a third each day if needed and prednisone 80MG a day for 2 weeks, then 60 for 2 weeks then 40. He said I could start the Mestinon first if I wanted to since I wanted to see the effect of each.

The first 2 days I just took the Mestinon with virtually no effect, On the third day I added the Prednisone with a very significant improvement the first day. After the second day I have had almost no double vision and still do not now at day 7. I have had just a little ptosis. I had expected the Mestinon to work immediately and for the Prednisone to take a couple of weeks after possibly making things worse first.

Other symptoms have increased or been added however.
My over all tiredness has increased. My chest seems to feel heavier each day. I had a chest CT scan Thursday and should know something about it after the Holiday.

Joint pains have started and is increasing. I used to have joint pain but had become very pain tolerant. Are voluntary muscles involved in experiencing pain? Does this mean I am still improving?

I have had trouble getting in my automobile for awhile now. I am not that tall (5'11'') but I had trouble curling up my body to get in the car (a Toyota 4runner, not a compact car). I don't have that trouble now. Again, am I improving?

Yesterday when I went to eat a hot dog I had trouble getting my jaws to work (not a tough steak but a cheap hotdog). This is my first experience with chewing issues. Once I got past the first byte things returned to normal. I thought the chewing problems increase as you eat a meal. not with me.

Today my joints, particular my fingers almost lock up. As I type this I have to stop my typing every 20 or 30 seconds and flex my fingers. This does seem to increase with use.

My eyelids have gotten more and more tired and heavy even as my eyesight conditions have improved. It happens all day long from the time I wake up not just as the day wears on. I believe That I have been sleeping very well.

So some things are getting dramatically better, others new conditions seem to be added and getting worse. I will call my neurologist Tuesday after the Holiday, I just want to ask if others have these had these symptoms.

Edwin, I had the same problem with my fingers when I started Mestinon. It pretty much went away over time and now it's only occasional.

I'm not on Prednisone so I don't know if your other symptoms are related to it or not. I can only say that Mestinon worked immediately for me. I had to have the dosage increased over time but even at my initial dose of 30mg every 4 hours there was a marked improvement. Be sure to mention all this to your neuro when you call him.


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