i was diagnosed with myasthenia gravis about a year ago and was put on a treatment of a commonly used steriod and mestinon. well the steriods made me feel weird and after the initial prescription was used up i never refilled it and only used the mestinon. using the mestinon helped immensly and i didnt see any adverse affects on stopping the steriods. anyway about 2 months ago i started feeling a sensation in my left leg, as if i strained a muscle or gland. the sensation developed into hip and leg pain the strangle subsided in one leg then switched to the other. i went to a local doctor who after chatting for a few minutes said it was inflamation in the joints (i had a mild flu a week before the symptoms) and put me on an anti inflamatory. well no improvement , rather more pain less mobility, so fustrated i went back to the expensive specialist that diagnosed the initial myasthenia. he was aghast that i stopped the steriods and suggested the the joint and leg pain was a result of the myasthenia. i did some web research but it dosent seem to add up i cant find those symptoms associated with myasthenia. could stopping the steriods have caused this? even though i have been great for the past year
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replied December 21st, 2008
leg pain and MG
All I can tell you is that I have pain with the MG. I think that MG patients do have pain, from the muscle weakness.
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replied February 18th, 2009
Leg Pain and Myasthenia Gravis After Lipodissolve
I developed MG immediately after the second of two lipodissolve (mesotherapy) treatments to the tummy two years ago. Symptoms include severe weakness and fatigue of all striated muscles from the waist down, and after a couple of minutes' walking, I get that sort of burning sensation in quads, calves, etc. expected with overexertion -- like I'd been on a treatmill for hours!

I've not accepted any medical treatment as the long-term effects of medication seem worse than the disease. How else someone with myasthenia gravis can gain or maintain muscle tone, though, I don't know. My lower-body muscles are weakening (and shrinking) with time. Suggestions?
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replied July 5th, 2009
Leg pain and Myasthenia Gravis
I was diagnosed with MG 7 years ago, 3 1/2 years ago I developed leg pain (not sciatica). The docs have been worse than helpful-at one point giving me meds that made me almost stop breathing. I'm almost ready to try witch doctors, as I can barely function now. Any suggestions?
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replied October 25th, 2009
Myasthenia Gravis -fasiculations and pain in ankle,calvesand hip
I have had MG for 4 years now. I take 150 mg mestinon daily and receive ivIG every 8 weeks. I lead a normal lifestyle (53 years old). I have fluctuating weakness, mostly in my legs and my left leg is weaker. I've never had eye involvement. I'm positive for MG antibodies. I have frequent pain in my calves and ankles. Standing, walking affect this. I can often do an activity but "pay" for it the next several days. I also have fasiculations (without pain)and they are random. I think we have to accept that this is a disease that can't be explained and any kind of infection or medication can mess with our immune systems and cause "flares". I had swallowing and shallow breathing initially but now it is rare. I pray that Obamacare won't take away my ivIG treatments. They help me to have the quality of life that I do have. I feel a lot of times I limp more from pain in my calves than from weakness, but I guess it is a result of the weakness. 1000 mg aspirin helps me. I try to eat healthy and not take any vitamins or things that would "boost" my immune system. God bless all of you with MG; I hope that a cure will be found. It IS the best understood of all autoimmune disorders.
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replied April 15th, 2010
MG and pain
Greetings. I''m not sure I''ll get a response since this post started some time ago but wanted to contribute. I was just diagnosed with MG two weeks ago. My antibody count is not nearly as high as some I''ve seen (1.2 vs counts as high as 23), but I believe my life with MG started nearly 12 years ago. I had a severe period of exhaustion, very poor exercise tolerance, and wide spread pain. We looked at fibromyalgia, chronic fatigue, and RH but nothing quite fit. So I gave and took alot of Advil to survive. Then I believe I went into remission. Six years ago, I had a hysterectomy and everything went haywire after that. I had eyelid drooping and a sad look about me from facial muscle drooping. The exercise tolerance is worsening. Coming out of the hysterectomy i also had developed a hypotonic bladder (retention so bad I have to catherize myself). Despite all of this, I work full time and survive relatively well. And, yes, I have pain - lower body, sometimes feels like sciatica, sometimes feels like bone pain (deep, boring), definate weakness in most muscle groups. I''ve just started on pryidiostigmine but haven''t been on it long enough to know if its helping. And I''m waiting for my thymus CT scan results. I''m told taking it out is one of the best treatments for MG patients as long as the gland is enlarged or there is a tumor on it. Don''t know if I''ll ever lose weight or get as strong as I once was (was an ballet dancer when young), but I''m determined to remain positive and make each day the best it can be.
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replied June 28th, 2018
Hi, interesting that this came about after your hysterectomy.I had a nerve hit when I had hand surgery and then I had shoulder surgery on the same side and low and behold three months later I was diagnosed with MG while I was still having therapy for my shoulder surgery. Have read several posts whereby surgery was involved and then the MG came on. Is there something to this? Is anybody in medical profession looking at this possible connection or MG support sites. I have just started to have upper leg pain in the muscles in the back of my legs. I am cautiously looking into alternative medications but the side effects are horrendous. Right now I take mestinon 60 to 75 mg several tms a day. Hoping for some input from anyone.
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replied December 3rd, 2010
I was diagnoised in 2003 but I had symptoms as early as 2000. I was diagnoised general and I had it all I know what you are going through but I will tell I started out with 150 aday imuran, upto 720mg mestinon, predisone 20 mg for 1 yr and I had 6 IVIGs. From the top of my head to the bottom of my feet didn't work right. Now I take 60mg mestinon, 25 mg imuran per day. I have change my life style and I am a Tai Chi Instructor. I live a almost normal life and stress is the only thing that seems to get to if I am agitated by someone, which is rare. I even had to start wearing orthodics because they said I had fallen arches, I was almost incontinent.

They tried to get me to have my Thymus out and I refused. I had not tumor and the odds of stopping MG is slim. If you change your life style, eat properly, exercise (not high impact), makesure you are getting the proper vitimins and minerals you improve. I won't say this is for sure fix but I will tell you it will improve.

I no longer wear orthodics in my shoes, I have no problem with incontenence, my symptoms are minimal. I am a Tai Chi Instructor.

Well thats enough for now I am running out of battery power.
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replied June 28th, 2018
Are you on 60 mg of mestinon total daily of several times a day. Are you having any side effects from the imuran. Diagnosis two years ago, just starting to have upper leg cramps. Would appreciate your reply
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replied June 28th, 2018
Are you taking 60 mg total a day of mestinon or several times a day? Did you had any side effects from the Imuran when you started on 150 mg and how long were you on it before you tapered to 25 mg? I was diagnosed with MG two years ago and take 60 - 75 mg three to four tms a day. Have several side effects and I am very cautious about taking Cellcept or
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replied July 25th, 2013
Please help.!
I was diagnosed with mg about 2 months ago.I didn't test positive for mg antibodies,but have all the hallmark swolowing,speech,and severe weakness.I have been having severe back and neck pain along with hip and calv pain I'm 31.I have 2 kids that I'm having trouble caring for.I lost my job in nursing.I can't walk swolow or talk long without severe weakness and pain.I take mestenon.It helps with the swollowing and speech,but I still have severe pain any ideas.John from nebraska 7/25/13.
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