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Ali

Australia

#1 Dec 27, 2005
I know that pain is not usually associated with MG but I ache all over! Have had all sorts of scans etc and all normal so where is the pain coming from?
Am a 54 year old female who has been diagnosed for two years. Have got used to the limitations of this condition and am coping well except for this pain. Any ideas?
Rita

Apopka, FL

#2 Nov 14, 2007
I have myasthenia also. My body hurts from head to toe. I had to close my beauty salon due to myasthenia. Iam going to try and get my disabilty. Are you on disabilty?
Frankie

Palm Bay, FL

#3 Dec 10, 2007
I've had to quit my job as a customer service rep in a call center, after being diagnosed with mg. I applied for disability 7/2005 and received approval 9/2005...I hurt alot also...still til this day with meds I hurt
MarciaMG

Los Angeles, CA

#4 Jan 21, 2008
Because of muscle weakness my gait is uneven, leaving me with hip and back. Also, I developed fibromyalgia probably from the sleep apnea associated with MG. My neurologist, at the time suggested a sleep study which I finally had when I developed shortness of breath. These might be reasons for your. You could also have from another autoimmune disease like lupus. Although doctors deny you get pain from MG I feel you do because you are using a weak muscle which is tired.My MG was diagnosed in 1984 and before I started with a pain clinic I was miserable. I also see a rheumatologist because of osteoarthritis and some sort of disease which is also autoimmune. Just to let you know I am an RN but have not worked since 1985.
Billie

AOL

#5 Mar 21, 2009
MarciaMG,
I am also an RN, and work 12 hour shifts (at night). By the time my shift is over, I am in so much pain I can barely move. It feels as if every muscle in my body hurts. I have pain in my joints, which is a new pain. It is very frustrating. I never have any energy, and feel the need to lie down all the time.
I am taking pyridostigmine, but stopped taking it for a month..basically to see if I still need it.
This is when the pain started. I have began taking it again. I haven't seen my neurologist in a year. Guess I should. Do you ever think that no one helps you? I sure do.
I have psoriasis (another auto immune disease). Perhaps I have psoriatic arthritis? Who knows.
I have chronic insomnia, which is never treated. I also have chronic headaches daily, which is never treated. I am sick to death of doctors.
Tests have all proved negative...they think I'm crazy I'm sure. I tell them that on my tomb stone it will read.."I told you I was sick".:)
Sally

Brick, NJ

#6 Apr 8, 2009
Hi, to all. I haven't been diagnosed with MG yet but have all the symptoms for the last 12 years. Been to a dozen rheumys who can't find anything. Finally I am going to a neuro doc to beg for the blood test. Had to quit my job in radiology for all the same reason. Too tired, and muscles screem by the end of the day. Sorry, but I have tears reading your posts. Maybe, finally I too will finally know and my family won't think its in my head. Hey like the comment about the description on your tomb stone.
Billie

AOL

#7 Apr 8, 2009
Hey Sally...
I found that you have to take charge of your own health care. These Doctors don't lay awake at night wondering how you are. I have found a yahoo group for MG that has lots of people with similar problem, and for the first time, I feel like someone understands.
http://health.groups.yahoo.com/group/MGCTHT/

I would urge you to join it for support and tons of information.
The owner of the group is named Steven, and he is a wealth of knowledge.

heheheh.....watch me and see if I don't put that on my tomb stone!!!
Billie
Sally

Brick, NJ

#8 Apr 10, 2009
Hey, Billie
Thanks for responding to my post. I will check out the support group as well. And wow, finally I am finding people like me who have a chronic illness and understand that our lives are somewhat different. Too bad my hubby doesn't get it. He thinks its all in my head and I think he actually adds to my condition by causing me stress. Oh, well, it is what it is!!!
Hope everyone whose reading has a nice weekend.
Jimmy

Chattanooga, TN

#9 Jun 5, 2009
I have had MG for 2 1/2 yrs. And can still work a faily light job 8 hrs. 5 days a week. I am tired all the time and just recently started having all my toes ache when I walk alot. I have done very well on the medicine and I take the IVIG every 2 weeks. I used to take it weekly. I feel for all of you as most people who know I have it think I am very normal. They don`t know I have to sleep my life away just to work 8 hr. Days. I really miss feeling good all the time. My best to all of you. And thank you all for posting your feelings about the diease.
Billie

AOL

#10 Jun 6, 2009
The MG group has moved to a google group.http://groups.google.com /group/myasthenia?hl=en

it's called MG Climbing the hill together.
Lots of people sharing what we term "the beast".
Come visit.
shaimaa

Cairo, Egypt

#11 Jun 14, 2009
hi everyone
i'm shaimmaa
i'm amedical student
i had also myasthenia gravis
it wasdiagnosed from about 4 months
now i had very important exams and i feel hard to study to enter exams
i want ur advise
Laura

AOL

#12 Aug 9, 2009
Hi

I have MG and pain & weakness all the time. Was diagnosed Dec 08. I had a cancerous tumor in my chest on my tymus gland. The doctors said that when this is removed the MG would go away, it has not, it is getting worse. The mestinon makes me sick, so I have to watch how much I take.
Vivian

Saint Petersburg, FL

#13 Aug 16, 2009
Hi

I was just diagnosed about 2 weeks ago and at first I didnt believe the Doc was right. I didnt think I had any of the symptoms except the weakness. He ignored my complaints of severe pain and difficulty walking and said, "NO, with MG you do not have pain, that is coming from nerve damage in your back", and that was it, I was dismissed. Sure I received a script for pyridostigmine and execises for my back but I was lost. I work 14 hour days and told him how hard it is but I felt ignored. I agree with everyone, I believe pain is associated with MG. I have aches, pain and burning in my legs and sometimes my arm. It Horrible. I am trying to keep working but it is so hard. Let me ask, has anyone else had issues with memory. I forget alot and I am nervous about this.
atsu

Ghana

#14 Oct 12, 2009
how can you prevent MG at all.
angelito

Cincinnati, OH

#15 Oct 14, 2009
i have mg and pain from head to toes,also memory loss ,and i also get very upset just cause people dont understant mg very well,its very hard to live with ,use to be very happy hard working active ,but no i feel as tough i lost my life dont no whats going to happen next?
Billie

AOL

#16 Oct 14, 2009
Angelito and Everyone who has MG with questions.
Join the google group MG climbing the hill together.
http://groups.google.com/group/myasthenia...
I have learned everything I know about MG from the people there.
mike e

Antioch, TN

#17 Jan 10, 2010
i have severe muscle and joint pain have been diagnosed with for over a year,
nuro Dr. does not think it causes pain, treatment is mestion 60MG 4 x a day and adderal 20mg once for the tiredness, My GP will treat my pain with standard cryteria hydrocodone, darvocett, klonipin, neurontin, and ambeien for sleep.]
This help if i take on a regular bascis, but somthime i skip doses but should take before the pain starts, but i dont like the drugged feeling i get I was thinking about disability I am having a had time doing my job as a gourmet chef, in same restaurant for 30 years in Rockefeller Center
Annie-SalinasCA

United States

#18 Jan 24, 2010
Hi,I have been recently diagnosed with MG, and have been started on prednisone by a neuro opthamologist. I am neg for having the Ach receptor antibody. But she thnks II have MG and that taking prednisone will confirm it , if it helps my symptoms, which it has. I have a neurologist who is an idiot, and wants to blame it on my pain medication that I have been on for some time. Except there is no connection between when I take pain meds and my symptoms, and I refuse to see her again. I am so short of breath and my lung doc wants to biopsy me but hasn't even tested my diaphram muscles. I did have pulmonary function tests and he said they were bad. Has anyone experienced that? Poor pulmonary function with MG?
About the pain thing, I have been in serious chronic pain for 7 years prior to developing MG symptoms- droopy eyes, double vision, etc. I felt like all my muscles were hurting when my MG symptoms started. Like chronic fatigue syndrome or fibromyalgia. I think that we all could be having a combination of different auto-immune disorders. So many people with MG have other auto immune diagnoses. I think that the addition of having muscle weakness does put a strain on the other muscles and the joints, etc and this contributes to the all over muscle pain that so many of you are posting about. Maybe they should say , not that MG does not cause pain but that living with MG causes pain. There is alot of information online about MG. Also there is another support group for MG at Daily Strength.com You are not alone, and if your doctor isn't "working" for you, fire them! Good luck to all.!
Victoria

Singapore, Singapore

#19 Feb 2, 2010
Hi annie. A close aunt of mine suffers from MG and she has the same shortness of breath like you. The disease has attacked her heart muscles and she had to be admitted to hospital. She has to take medication for 3 weeks to strengthen her heart muscles. She also have difficulties swallowing, even her own saliva. We had to cook soft food for her. Do you have this problem with food intake too?
Annie- SalinasCA

United States

#20 Feb 2, 2010
Hi,
I'm sorry to hear about your aunt having so many problems, Victoria. Difficulty swallowing is a common symptom of myasthenia gravis. What you describe, including the trouble with saliva, is not unusual. I've read that thin liquids can be the worst culprits, so cooking/eating soft food is a good thing. Does she have trouble speaking? I have heard that having someone count to 50 can indicate weakness in the throat, if one's voice gives out or slurs before 50. It is a simple way to judge strength of the throat. If you are concerned at home and want some way to judge how she is doing. Same for breathing. A person can count to 20. If you need to take several breaths to get to 20, then you are short of breath. I am curious about her heart trouble that you say is related to the MG, because I thought the heart was not involved with MG.
About me, yes, I do have trouble with food and liquids but have been on prednisone and it has helped those symptoms. Best of luck to you and your aunt!

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