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-   -   Any input may help at this point (https://www.neurotalk.org/myasthenia-gravis/210375-input-help.html)

juliejayne 10-03-2014 12:01 PM

Hi Bob,

You have certainly collected quite a list of problems there.

Quote:

I was given a blood test and told that I have a positive result for MG antibodies.
If it was a single blood test then you are probably positive for AchR antibodies. The reason for my questioning it is simply that MG can come in a variety of flavours, and the treatment for each variant can vary. Heck the treatment for each patient can and does vary.

Quote:

I'm not sure what you meant by "it might be that the Neuro was blaming some of your existing problems on MG." but there is no doubt at this point that I have MG.
What I was concerned about was that the Neuro might be blaming MG for some of the symptoms that your other conditions are responsible for. In which case he might be over-reacting. For instance the
Quote:

I can barely walk... I stop breathing in my sleep.
Both of these could be due to MG, but could also be due to other conditions. Are these new symptoms or old ones?

Let us know how you get on with a smaller dose... and get back in contact with your Neuro.

southblues 10-03-2014 02:15 PM

Bob, I am really sorry that you are having such a hard time. I hope things get better.

I would worry about taking prednisone with the diabetes. There are other immune suppression drugs you can take. I take cellcept. Some people take immuran.

Steelworker 10-03-2014 02:37 PM

meager advice
 
Bob, it might be a good idea for you to identify http://www.myasthenia.org/ a local chapter and a support group. Give them a call. They'll tell you which neurologists in your area actually specialize in MG.

Also make an appointment with a pulmonologist for a pulmonary function test and a sleep study. In the meantime invest in a $50 oximeter so you can monitor your O2 levels especially upon awakening. Keep a log of the readings for the pulmonologist.

Good wishes.

cait24 10-03-2014 04:13 PM

Bob, They think Hidradenitis suppurativa is autoimmune related against the sweat glands. I believe I have suffered a bit of this previously but was never diagnosed. I was afraid when they put me on prednisone, that is would get worse because of the immune suppression. Instead they all went a way and have not been a problem since. So I guess mine were autoimmune related. I have been on prednisone for 2 years and this was the only good side effect. They put me on prednisone for MG. I hate prednisone it has so many bad side effects. I also take mestinon and cellcept and a bunch of other meds to counter act the side effects of prednisone,

Prednisone should be a short term treatment for MG. Most neuro start you on another immunosuppressant too like cellcept and imuran. These take a long time to start working more than 6 months sometimes. Prednisone gives immediate relief until the others begin to work.
Good luck
kathie

UncleBob 10-03-2014 05:33 PM

Thank you southblues
 
Quote:

Originally Posted by southblues (Post 1100946)
Bob, I am really sorry that you are having such a hard time. I hope things get better.

I would worry about taking prednisone with the diabetes. There are other immune suppression drugs you can take. I take cellcept. Some people take immuran.

Thanks for the input and concern. I will definitely question my neurologist about the adverse side effects should he suggest prednisone at any point in my treatment. I appreciate the heads up.

UncleBob

UncleBob 10-03-2014 05:46 PM

Thanks for info Steelworker
 
Quote:

Originally Posted by Steelworker (Post 1100951)
Bob, it might be a good idea for you to identify a local chapter and a support group. Give them a call. They'll tell you which neurologists in your area actually specialize in MG.

Also make an appointment with a pulmonologist for a pulmonary function test and a sleep study. In the meantime invest in a $50 oximeter so you can monitor your O2 levels especially upon awakening. Keep a log of the readings for the pulmonologist.

Good wishes.

Fantastic advice Steel... This is exactly the kind of input I am looking for. All 3 suggestions will be followed. They should have told me this at my appointment but I guess they all seemed a little preoccupied with ordering lunch. :rolleyes:

A great help,
UncleBob

UncleBob 10-03-2014 06:00 PM

Thanks for input kathie
 
Quote:

Originally Posted by cait24 (Post 1100971)
Bob, They think Hidradenitis suppurativa is autoimmune related against the sweat glands. I believe I have suffered a bit of this previously but was never diagnosed. I was afraid when they put me on prednisone, that is would get worse because of the immune suppression. Instead they all went a way and have not been a problem since. So I guess mine were autoimmune related. I have been on prednisone for 2 years and this was the only good side effect. They put me on prednisone for MG. I hate prednisone it has so many bad side effects. I also take mestinon and cellcept and a bunch of other meds to counter act the side effects of prednisone,

Prednisone should be a short term treatment for MG. Most neuro start you on another immunosuppressant too like cellcept and imuran. These take a long time to start working more than 6 months sometimes. Prednisone gives immediate relief until the others begin to work.
Good luck
kathie

Very few people can identify with me in regards to Hidradenitis suppurativa and my heart truly goes out to you. So glad you were able to resolve that without surgery. Unfortunate that you had the other health issues as well. I guess you also feel like a fire hydrant in a room full of dogs some days. :)

Thanks for the well wishes and I wish you well as well :wink:
UncleBob


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