Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Of course, I also have a thymoma, so I expect the MG was inevitable.
Whenever the body faces ultimate harm it automatically turns to save the most necessary body systems and lets the others go. Just as it would pull the majority of the warm blood from limbs sacrificing them in the event the body was in danger of freezing to death. Our particular disorder lets the voluntary muscles go. I think perhaps so that it can concentrate on the brain and involuntary muscles and systems.
I do not know if we all have the same "trigger" or not. I do think we all passed the same threshold for dealing with toxins.
I know it sounds crazy but for a while now I have been asking myself if we have always had these diseases and problems or if our developed rapid communications have helped us record and discover them. Now even our youngest generation are showing problems with ADD, obesity, diabetes and by evidence of this website even MG and that is just a very few. I think we are getting sicker by the generation.
Kimber
I had the genetic predisposition, a father with autoimmune MG, and a severe respiratory infection in medical school, and lots of strep (which had caused autoimmune illness in the other side of the family), and certainly more than enough stress with medical achool, and moving and pregnancy, and residency, and medical practice.
There was no single event or particular day when I can say that I didn't have MG or that today I have MG, although I remember the day I discovered I couldn't run. But that was after my second child probably had neonatal myasthenia.
There may someday be a finding that results in being able to say without which no MG, like the TB bacillus and TB, but if the system is vulnerable, something will happen. I agree with Kimber both in that we are probably recognizing and reporting more illness and those may have been here all along and we are being exposed to changes in our environments faster than our bodies can adapt, and perhaps some old adaptations no longer work to support our health. b.
However years past, I was stressed out, slept and ate poorly, and was ruled by my driven personality. I also developed an atypical bacterial infection a few years ago that kept coming back, then allergies even though I was in my forties. The allergies were probably the first sign of autoimmune problems looking back.
Copper, what antibiotics were you on for your abscess? Some antibiotics can uncover or exacerbated mg.
Cathi
I don't believe these events led to my diagnosis. Knowing what I know now, I can recall back to childhood, maybe around the age of 8 or 9, having episodes of generalized short term muscle weakness.
Fast forward to my early teens, in the late 60's & early 70's and I made very poor social decisions. TJ started a string last week that struck a cord for me. I "experimented" with drugs far more than I care to admit and I now wonder if my drug use was a contributing factor.
I wonder why our neuros ask about recreational drug use. I always disclose my hx in the paperwork; the only comment ever made was that I was honest.
Larissa
For me - it was likely also stress. To begin with, academic medicine is not so easy right now - with grant funding cut a great deal. 3 wks before diagnosis I had to present results of a clinical trial I ran at a national meeting. I was very nervous thinking that I would have to present to a few hundred people. I found out on the first day of the conference that my presentation was ranked #11 at the conference and I was going to be speaking in the largest room in the center with tens of thousands of people in the room. The room was so big there I was on video so 10 large screens could be projected to the audience. I was staying a block from the water at Miami Beach and never went to see the ocean because I was so nervous.
I came home and decided to plan a last minute trip to go to Disney World. We went the next week - but planning, packing and being there with a 1.5yo and 3.5yo was a little stressful. Interestingly, I got 2 bug bites in Orlando. I thought nothing of them and assumed they were mosquito bites because they were so itchy. The marks from the bites, as well as the itch, stayed for almost 5mos.
The week after disney - I had ptosis which progressed to generalized weakness in a few days and on the fourth day I was admitted for respiratory distress to the ICU.
I still find it curious that I had bug bites that actually itched for 5 whole months....esp since I was placed on high doses of steroids immediately afterwards and am still on them.
Anyway - I wish we could all figure it out and perhaps understanding etiology could get scientists closer to cure!!!
It was - just a single study.
And? No other studies had been done yet, that were researching the same area.
The research - of this one study, showed?
That a high percentage of diagnosed, seropositive MG patients?
Also showed antibodies: against various cancers.
It makes sense, thymoma - would be at the top of that cancer list.
However, the cancer antibodies - were not limited to thymoma.
And the thing is? In many of these MG patients?
There had been no diagnosis of cancer yet.
The study made no conclusion: about this correlation between MG antibodies, and cancer antibodies.
The study had not been designed - to study this question.
It sure seems like an area - for further study, though.
Many of us, right here?
Have had a thymoma, or cancer of one kind or other.
Think - of all our friends, here.
Who have been diagnosed - with both MG and a cancer.
Maybe - it happened to them, several years ago.
Maybe - they are fighting a personal battle, at this very moment.
Are - there medical researchers, wondering right now?
Are - some cases of MG? (Not - all cases.)
Are - some cases of MG - the result of an autoimmune response - against cancer, in general?
We are a long way, from knowing more. There is - no proof - about anything. Makes you wonder, though.
Thanks for the great question.
- Ross
This is in reference to CellCept:
There have been case reports of lymphoma and other
malignancies associated with mycophenolate treatment.
However, in a prospective observational study of renal transplant
patients treated with mycophenolate, there was no
evidence of increased risk for malignancy relative to other
immunosuppressive treatments [53]. This suggests that the
increased rate of malignancy is associated with the immune
suppression and not a direct mutagenic effect.
This is such an interesting question and I love the discussion that has ensued.
I don't think I had a stressful life but it was definately a very busy one! If iI had one element of my pre MG life that I would say was out of proportion was the time and energy I gave to helping others. I had a work community development role that saw me very involved with looking at the needs of others. I loved it but probably took on more than I should have (just my nature). It was sometimes very emotionally taxing.
In the 14 months before my MG symptoms appeared I had 3 gynological operations. The first time I had a severe reaction to the anastestic propofal and although it wasn't used in the 2 subsequent operations I took longer each time to recover. The last op was 8 weeks before the double vision, ptosis etc appeared. My neurologist said the anastestics wouldn't have caused the MG but would have unmasked the symptoms.
Like others have mentioned before the irony of now having days thinking about whether I have the strength to go to the letterbox was that in my pre MG days I loved going to gym, yoga, walking the dog etc.
I'm not sure what the reasons are but am comforted by the fact that I am not alone and maybe one day............
Gez
I feel mine was probably brought on by the main thing stress, my husband had a triple by pass in 2000, I had neck fusion in 2001. Then in 2006 my husband had a heart attack then in 2008 his job closed after 20 years and he was out of work and his health went down hill and was put on permanent disability. We had to short sell our house and move to an apartment.
In Dec 2008 I had a heart stent put in due to a blockage and Joe had 4 stents put in that year. In Dec 2008 a coworker had a massive heart attack at work and passed ( I was the runner to the front for the defibulator)
In 2009 I had multiple UTI's and in Jan 2010 the double vision started off and on. In March I got a bad cough that lasted about a month then in May I went for a month with so bad double vision that I left work in tears because I could not see. My job is stressful as I handel Corp complaints.. I was diagnosed the end of May.
March on 2011 I was diagnosed with Kidney cancer and April had a partial kidney removed.
We got a new manager at work in 2011 who is strickly by the book and was having us log every min at work to see what we did, this was awful as seemed we could not get our work done due to the logging, she was all about numbers. this was so stressful to the whole team.
This year as you all know has been a wild ride for me. At the end of April I have not been doing very good, and now have been off work for almost a month now. I am going tomorrow for a bronschopy due to what they found on the ct scan.
I also feel gentics plays a big role, I have cousins that have fibormyalgia, my sisters grandson was just diagnosed with MS and my sons blood work shows he has lupus.
Sorry I wrote a book.... this has been a great topic thanks for bringing it up