Hello Everyone!
 

I am new to Neurotalk and am looking forward to visiting people with MG. It is very misunderstood. I look very healthy but we all know that looks are decieving.
This body has been very good to me for many years and now I am looking for ways that I can help it get better.

I love to ride motorcycles and MG just slows me down sometimes.

I am taking Imuran and have stopped Prednisone and Mestinon. I was given IVIG last year and felt great for several weeks but the cost is crazy high.

Has anyone had systemic muscle pain? I have been plagued by muscle pain from head to toe since stopping Prednisone and continuing on Imuran. How about you?

Hi, Motorcycle Diva. Welcome to the forum! Did you know that your initials are MD, as in doctor?! ;) Do you have an informal name we can call you by?

Sometimes people can get a steroid myopathy. Steroids can also cause numerous vitamin deficiencies, like Vit. D. B12, calcium, albumin and iron. Have you been tested for any vitamin levels? I think you should bring this up to your primary doctor. Steroids are antiprostaglandins. What they do is reduce the gel coating of the stomach and can reduce the amount of stomach acid. We need stomach acid to properly digest our foods so that by the time it gets to our small intestine, where nutrients are absorbed, it is broken down enough for those nutrients to be absorbed.

Do you have insurance? I know Mestinon is high. I'm not sure if they have any programs for it or not.

I take Mestinon and coffee. ;) Caffeine is a cholinesterase inhibitor like Mestinon is. So are the nightshade foods (tomato, potato, eggplant, peppers, tobacco). There's just something about coffee, besides the dopamine in it, that helps give my MG that extra boost in the afternoon.

I hope you can figure out why you are having such pain.

Annie

I do! It started in my legs and my Neuro thought it was RLS...then my arms back and neck started. My muscle pain feels like I worked out too hard, or like after a deep tissue massage if you don't drink water...very achy and sore. Puts me in a pretty bad mood too...I'm currently taking lots of Vicoden and advil, also seeing a Pain management specialist who put my on Nuerontin (sp?) to get me off the vicoden...So far the stupid Nuerontin isn't working, I'm supposed to take 2 pills 3x a day, I started with one at night, and add another at night, then add one in the afternon and so on. After I got up to 2 pills 2x a day, I tried to go with out the Vicoden, and ended up crying with so much pain...so I called and told him it wasn't working, but he insisted I go up to the recommended dose...I did, and still not helping! Have you seen anyone about the pain? Supposedly our disease is painless, but the more pole I ask, the more seem to have the same symptoms...I think someone needs to re-write those stupid information pages...I read one today that insisted most people with MG were able to live a normal life and continue to enjoy the hobbies they always have. Ha! I'm scared to go to the grocery store by myself!
Jess

Welcome to the Forum Motorcycle Diva!

I understand how looks can be deceiving for MG. I don't get a lot of pain with my MG, only when I push myself. My muscles do easily get strained so I have to be careful.

I am only taking Mestinon so I don't have experience in Prednisone or Imuran causing pain.

Welcome motorcycle diva.

This is an excellent place to ask for help and advice. I see Annie who is our local (was going to say boffin but know how it confused everyone last time lol) font of all knowledge, like Alice, has given you some answers.

I hope they help

Rach

Motorcycle Diva,

Welcome to the forum! There are so many informed and knowledgeable people on the forum. I'm sure someone will be able to help.

You're so right about looks, don't you just love "But you look so good". I have to laugh, it makes me think of people at a wake, when they comment on how good the deceased looks!! (OOP'S I hope I didn't offend anyone!)

I fatigue rather quickly, so I try my darndest not to push until i'm in pain.

Rachel

Thanks for responding Annie, you can call me Diva. :) I am in remission and do not require Mestinon at this time. Vitamins levels are good. My neuro told me to live with the pain but it is stopping me in my tracks. He dismisses me when I mention the pain. Suppose he is not hurting, therefore it is not important. lol.

Sounds like you have ran into the same thing I have. I want to know what causes the pain and then treat it. Your description is right on target. I feel it in my larger muscle groups first and then head to toe. It is 24/7. I have never been one to require much meds. Taking two Tylenol was a big thing for me. Now I am taking a Loritab to sleep get some relief so I can sleep at night. I feel it is related to or originated from one of the meds.

I don't know about any of my meds causing it...I've tried to think of every possibility. I do take a small amount of Prednisone, Imuran, Mestinon...My Neuro hasn't even tried to find out what might be causing it..He gave me the Vicoden after I was already taking it for after my surgery..It helped me then so he kept me stocked with it. When I started taking too many he sent me to the pain mngt Dr., and he's trying to find something that helps better without killing my liver. To me, it feels like poison leaks from my muscles after they are worked. Even if I sit on the couch all day, just a trip to the bathroom is enough to set it off. And if I'm unfortunate enough to be in the middle of something when it's time for a boost from my mestinon, it quadruples, and even the Vicoden isn't enough.

I did come accross something lately that I wonder if it all might be related, possilbly even another condition. I have found that topical anasthesia dosn't work the same way for me anymore. During my labor with my baby, 2 epidurals wouldn't take, and during my recent dental work, I used way more Novicain than it should have taken. It kept wearing off within minutes rather than the hours it should have lasted.

And, just last night (due to the arrival of my monthly gift;) ) My legs were unbelievably weak, and the pain was terrible. So my pain is definately related to my muscle weakness. I've also wondered if it could be my muscle wasting away and releasing some kind of chemical?

Jess

Do you try to exercise or do some light muscle strengthening training? I can't do aerobics or anything as stressful as I used to, but I was walking a mile each day but as I came off the Prednisone, no more walking. I am trying some yoga just to keep the muscles somewhat active. I love the WII system for that.