Thats what the dr told me. Maybe its doesn't for some, maybe I don't have MG, maybe I have MS, maybe I don't have that either??? I do know, I have something.

Well yesterday, and today I only took 10 mgs of pred. I'm really feel bad. So achy, I'm having muscle spasms in my legs and back. And there absolutly know energy to do anything. Its seems no amount of rest will make it better.

I guess the end of this week I'll half to go see the dr. again. I don't know of any dr in my area that treat MG. I am going to wean down on the pred though. One more day of 10 then down to 5.

I try not to take any kind of meds, but sometimes you just have to, and that sucks. Anyways one day at a time, right I did read a while back, that people that have CFS take 5 mgs of pred everyday to help support the addrenals, apparently this was safe. I really wonder if anyone knows whats right. Maybe I'll ask the dr to phone the MG specialist in Vancouver and she can recommend some type of treatment. I don't know

Anyhow back to bed. Have a nice day everyone, Patricia

Please be careful with the steroids. They can induce a severe weakness in M.G. Please do not taper on your own also as tapering too fast can send you crashing. I'm sorry but to give the dose you were given and if I read correctly, is not the way to prescribe for M.G. as far as I ever heard.

There is an article on pain in M.G. patients that I will post. I have pain in my muscles and severe when pushing it. It was funny or sad to me reading the article, about how it is overlooked. I think maybe this doctor listened. It seems to me if it is not written in the classic textbook and one complains, bingo well it just cannot be. Reading about all the different m.g. patients it seems to me, I don't think it is at all so understood, as they say it is. Some articles are around about different or more than one process going on.

Stick to your guns, it is your health. I wish you well.
I cannot post what I think of neuro's, not all but enough for my liking. I will post the article and also coming down off steroids can make you feel crummy and can flare symptoms. Please speak with your doctor about the way it was prescribed and taper. Also with antibody or Musk testing any immunosuppresion can affect titre results.

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Source: American Association of Neuromuscular and Electrodiagnostic Medicine (AANEM) Released: Wed 27-Oct-2004, 10:00 ET
Embargo expired: Fri 05-Nov-2004, 14:00 ET Printer-friendly Version


Pain Often Overlooked in Myasthenia Gravis Patients
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MYASTHENIA GRAVIS PAIN MANAGEMENT
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Myasthenia gravis, a neuromuscular disorder primarily characterized by muscle weakness and muscle fatigue, reported in a new survey by Penn State University researchers that the disease impacts their quality of life.




Newswise — Patients with myasthenia gravis (MG), a neuromuscular disorder primarily characterized by muscle weakness and muscle fatigue, reported in a new survey by Penn State University researchers that the disease impacts their quality of life.

While this finding is not totally unexpected, the fact that a significant percentage reported experiencing pain as a result of their illness is. “That such a large number of surveyed patients reported pain associated with their disease,” explained researcher Dr. Milind Kothari, “is very surprising.”

Kothari and fellow researcher, Dr. Kevin Scott, anticipated that most of those surveyed would indicate that MG limits their ability to work or perform moderately intense activities. “We were surprised, though, to see 50% of the patients report experiencing significant pain as a result of their illness with over a quarter reporting pain of moderate or greater severity. Pain is not commonly associated with this disease.”

The surprising aspect of the survey results is that the patients’ physicians were generally not aware that their patients were in pain and, consequently, failed to treat it appropriately. The authors recommend physicians should routinely query their MG patients about pain and decide if this warrants treatment.

Myasthenia Gravis results from an abnormal immune reaction in which the body's natural immune defenses (i.e., antibodies) inappropriately attack and gradually destroy certain receptors in muscles that receive nerve impulses.

Most individuals with MG develop weakness and drooping of the eyelids; weakness of eye muscles, resulting in double vision; and excessive muscle fatigue following activity. In addition, in about 10 percent of cases, affected individuals may develop potentially life-threatening complications due to severe involvement of muscles used during breathing. Although the disorder usually becomes apparent during adulthood, symptom onset may occur at any age.

The full survey results will be reported at the 51st annual meeting of the American Association of Electrodiagnostic Medicine in Savannah, Georgia, November 3-6.

The AAEM is the largest organization worldwide (approximately 5000 members) dedicated to advancing neuromuscular, musculoskeletal, and electrodiagnostic medicine. The primary goal of the AAEM is to increase the quality of patient care, specifically for those patients with disorders of the central and peripheral nervous systems, neuromuscular junction, and skeletal muscles. This is accomplished through programs in education, research, and quality assurance. The AAEM believes that only physicians trained in electrodiagnostic procedures should perform needle electromyography and interpret nerve conduction studies to assure patients receive the proper diagnosis.



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© 2006 Newswise. All Rights Reserved.

For that info.

The reason this dr gave me pred in the first place was because I told her that it helped me in the past. I had been crashing for about 2yrs, every three to four months, with periods of weeks to recover. This one particular time, my lower back went hay wire I could barely walk. Anyhow ended up in the emerg, and because I can't take NSAID I was given pred. 25 mgs for 2 days only. Plus moraphine for pain. I was in the hosp for 2 1/2 days. When I got home it just got worse. My back pain was under control, sorta, but the rest just sucked. I did see yet another dr and no one had any idea what to do with me. Then they were looking for MS, yet all they ever did was give me a MRI of my brain. 8 months after the fact. Theres that pathetic work again. Always lame.

Well I did finally recover from that ordeal. I was reading about CFS then, looking for some reason that I was feeling this way, and also some way to fix the problem. Thats were I read about the 5 mg of pred. So when I seen my dr I asked if this was ok to do. He said that he didn't see any reason for not trying, they do give more to people with asthma conditions or bronchitis. So 5 mgs for 7 days every eight weeks is what I was aloud. I found that it got me out of the crashing, the first time, second time not so well. I then decided that I would only do this if it was really, really bad.
Sounds like I'm being my own dr. And you know you just about have too these days, have barley met any dr worth knowing.

So this is what I know of pred. No one has dx'ed me with anything. So really there is no treatment. And I'm really sick of this. I am going to ask for more blood test. I don't even know if I'm negitive or positive for antibodies. The blood test keeps getting lost.

I'm very glad that I have this place. Its really helped me find alot of answers to my health problems. Any help is really apprieciated. Thanks, Patricia

I would tell them to find your testing . I don't know your symptoms etc. but I would advise you to go in when your sick. I really mean this, show them when you are at your worse and bring someone with you and into the exam room and stay with you to participate in your questions. Again immunosuppression can affect titres. The best place to have your serum sent is Mayo but if you do it close to the steroid use, it's not accurate. So please if you are going to have blood work done ask the neuro when would be the best time after steroids. Have you had an EMG? I wish you the best in your quest for help. If you take Mestinon it can affect the results of the EMG.

Hi Gumby, Thanks for that advice, thats just what I did last thursday, went and seen the neuro when I was at my worst. He just thought "physco" all in your head. Although he did a very abrute turn when I called him on his shawdy work. He called me the next day to follow through on a MRI to eliminate MS. I also had a EVP done which was normal.

I've had the EMG and SFEMG. Those test where done by the MG neuro in Vancouver. Both where negitive, I have read since then that SFEMG are only 95% accurate when performed on facial muscles. I only had my thigh muscle and forearm done. Her opinion was, that she didn't think I had MG, but did perscribe mestinon to try? She never remarked on my borderline blood test, I had to ask for another, this is the one still missing. Left me wondering too!!!

End of the week is coming, and I will find that test. Feeling somewhat better today. yahhhhh Thanks so much, Patricia

Good luck. Keep plugging away. I am glad you are feeling better. I read stories like this and others, including my own battle. I look at the title of this thread and, and, and think, that should be a title of a book Watch yourself with the steroid taper.

Patricia, I'm so sorry you're going through all of this. I can certainly relate to your aggravation with neuros. I've only had 1 antibody test done. It was negative, but was done when I was just coming off steroids, so could have been negative as a result. So I don't really know if I'm seroneg, or actually seropositive but which was hidden by steroids. I've only had 1 EMG done, the neuro didn't even know enough to tell me not to take my Mestinon, then it was performed by a technician who was being trained, on a instrument which was not working right, and turned out, surprise, surprise, negative. So I don't know whether I'm negative EMG, or actually positive, but with the results hidden by Mestinon and sheer incompetence.
Gumby, many thanks for posting the info about pain in MG. I've always had some pain, but hesitated to mention it to the Drs., since MG "isn't associated with pain"!
Hugs,

My brain gets more and more twisted when I read post like these. What confuses me is that the neuro's all have different answers about testing. How long to hold eg. Mestinon for an emg. I have heard overnight, a few hours, I read somewhere a few days, except when there are swallowing or breathing difficulties. What is the correct answer for proper testing? Clinically weak muscles have to be tested, how many times has this been ignored?? There were some good posts on the old forum about testing but I guess they are in cyberspace somewhere. Now I read about a broken machine and a new tech.
There was a good reply on the M.G. ask the doc forum about testing, I will see if I can post same.
Note please, I know that titres can be present with steroids etc. but if there is a low result it is not possibly a true result, especially if on long term.

Myasthenia Gravis Can I have the muscles being affected tested?
06/21/2006 12:07PM



Question:
I have had problems swallowing and slurred speach on and off for for 4yrs. I had been told that this was a physical reaction to stress. It wasn`t until 3 weeks ago that I was diagnosed with a mild case of MG (through blood work results). Is there a test that can be conducted on the muscles being affected to find out the current condition of those muscles? In order to ensure that I am receiving the proper treatment.

Answer:
It depends on the treatment. Myasthenia treatment is divided into symptomatic and immunologic. If you are appropriately treated symptomatically with Mestinon, decrement might not be seen on your repetitive nerve testing. if you have been treated immunologically with steroids or another immunosuppressant, antibody titers can be repeated and might be decreased. I think a better test is how you are doing clinically. if your swallowing and slurred speech are improved and you have less of a problem, then it sounds like you are receiving proper treatment. I put more faith in clinical results than lab values and testing.


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