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...
I've seen on some websites and literature that MG typically peaks in 3-5 years. Is this accuarate? I'm assuming that there are atypical cases. I've had symptoms since 2008 but wasn't diagnosed until early 2009. I seriously think I am getting weaker by the day. My symptoms of fatigue fluctuate, but they are really bad right now and pretty consistent that past couple of weeks. I can't deal with the Florida heat, plus my AC is out right now in the car. I feel weakness really bad in my hands, forearms, neck, and legs/feet. Typing and writing is becoming difficult too. I don't think I'm a typical case because of my mild symptoms for years, but something has apparently changed.
Prednisone also can cause insomnia - which can aggravate the MG.
Best case answer: MG is brought under control without too many problems in less than a year with a combination of mestinon and IVIG or PLEX to manage the immediate problems as an immune suppressing med begins to take on the longer term problem. If this works, MG never really gets much worse than it is when diagnosed (which usually does not occur until MG is a serious problem already).
That is the goal of modern treatment--no real MG crisis, just diagnosis and aggressive treatment until a balance of mild MG symptoms and mild medication side effects is reached.
And that does work in many, maybe even a majority of patients. But for many it does not.
My own best guess at the average person's timeline for MG
--MG undiagnosed 2-5 years
--MG diagnosed but under treated 1-6 months after diagnosis
--MG aggressively treated leading to control 6 months-1 yr after diagnosis
--Balancing MG symptoms against treatment side-effects--the rest of our lives.
Since MG by definition waxes and wanes, our treatments must also wax and wane in response.
(of course sometimes a thymectomy stops MG; sometimes there is a remission so things could be better, and of course worse too).
These two older studies give a view of MG before the latest diagnostic tests and newer treatments--and probably a better idea of what MG would do untreated with immune suppressing drugs--the natural course of MG--another way of answering the question.
Both essentially give a 1-3 (some 5) year after diagnosis for the worst phase of MG. One statistic is quite scary--in 1940-1957, 31% of MG patients died from MG (of that group, over half of them in the first 3 years).
http://www.ncbi.nlm.nih.gov/pubmed/3318620
http://www.ncbi.nlm.nih.gov/pubmed/18059039
(note--in the second study it says the diagnosis of MG was by response to anticholinesterase meds--i.e. you had MG if a med like mestinon helped).
Stirz, how long have you been on Prednisone? Was it back when you were diagnosed or just recently?
If you symptoms get worse, go to the local doctor again and don't wait until August 20th.
To be able to recognize them, and then - act upon them.
And if they worsen? To act upon them, again. All under the guidance of a MG-experienced neurological practice.
You seem to have a good handle, on your symptoms - that is so much in your favor.
Sidenote: I'm lucky, I have an attending Neuro, Yet I would also settle for a neurological practice, where the associates felt comfortable ''tag-teaming'' their MG patients (this does seem rare).
A word of caution: don't do - what I did, last summer.
I kept waiting & hoping for my symptoms to subside.
They never did - and I ended up in crisis, which led to many subsequent, lengthy hospital stays.
Earlier intervention - might have prevented that crisis. In my defense: the slowly creeping, slowly rising increments in my symptoms - also prevented me from being adequately aware - of what was happening.
Well - what's past - is past. Hind-sight is always 20/20. (But a bad experience can be used by others - as a good lesson.)
The FLA summer heat-index, with no A/C in the car. Whew - that does present a problem, doesn't it?
I know money doesn't grow on trees, but consider a rental car, while you find an A/C repair shop. (We have used Enterprise for years, when needed. Same cars, at less cost - than Hertz or Avis. And much cheaper in the long-run, than owning a second-car.)
Car-rentals are not cheap, I realize. But compare that - to the physical and financial cost of a hospital stay.
Best wishes - Ross
You remind me of what happened to me. I made an appointment for a UCLA specialist that was way out so my regular doctors put things off until I could talk to him. But things kept getting worse and that appointment was still weeks out.
I agree, you are more than mild. Like Ross said, these things sneak up on us. Knowing what I know now, I should have made an appointment with my local neuro and said I wanted IVIG, Prednisone, and get started on Cellcept.
There are dangers with us "playing" doctor, but MG (generalized like what you have too) is very dangerous too.
The IVIG is starting to help me. The Prednisone I am taking probably wont help for three months - it has to shrink my adrenal gland. The Cellcept could take a year. At least that is my understanding of it.
Good luck and don't hesitate to contact another neuro sooner than the Mayo.
Would you agree - that at the top of the list - for the creeping, warning-signs of worsening MG - are the bulbar symptoms?
Symptoms like: increasing shortness of breath, increasing difficulty with swallowing, increasing difficulty with talking (including increasing hoarseness).
These are the specific symptoms that I watch in myself, so as to catch any problems, earlier than I have, in the past.
I'm not ignoring generalized MG, and the weakness that comes with it.
But these bulbar symptoms are tell-tale symptoms, at least for me.
When my myasthenic crisis was developing, almost exactly 12 months ago?
I was taking only Prednisone for my MG, at the time.
Over the course of the next 2 months, the Prednisone was not enough, despite several trips to the Neuro, and increasing dosages of Prednisone.
In mid-September 2012, my bulbar symptoms took a light-year jump, literally taking my breath away.
I required intubation and a lengthy hospital stay.
And being treated with various MG treatments like Plasmapheresis, IVIG, and Imuran.
Before finding a combination of treatments, that is now allowing very slow recovery: Rituxan, IVIG, and Prednisone.
- Ross
PS: Right now, I'm having small problems with shortness of breath, since the summertime humidity showed up. In an A/C-conditioned environment?
Like strizzlow, I feel much better.
I almost forgot:
I was first diagnosed, 7 years ago.
I did not have a myasthenic crisis, requiring a lengthy hospital stay, until 12-months ago.
In the first 6 years, I think there were 3 ER visits, all caused by overexertion in the summertime. All 3 ER visits were resolved by complete bed-rest, low-dose Prednisone, with no other medical treatment for the MG.
In those first 6 years after diagnosis?
Generalized MG with the accompanying weakness - was a bigger problem for me, than were bulbar symptoms.
(PS: I have 2 other autoimmune conditions, that complicate MG treatment. For example, I cannot take Mestinon, which helps so many Snowflakes.)
- Ross
The standard treatment, according to an article I got in the MG of California newsletter is Prednisone. It said that 80 percent MG could be managed with a low dose after tapering back down.
Your story is so important.
I lived in Florida (N.W. of Orlando) as a child and what I remember most is the suffocating heat and humidity. We weren't rich enough to have a.c. in the home or the car so I suffered a lot. I can't imagine how you make it from point A to point B without falling apart.
One thought is the cooling vest for when you are driving or if you need to save up money for the a.c. fix you can use the cooling vest at the bus stop. At least the bus would have a.c. but then you have to worry about waiting outside for the next bus to come along too.
I guess there is no good answer. I really don't understand why the doctors are insisting on a repeat SFEMG if you have positive antibodies. According to my Neuro the SFEMG being positive is inconsequential. He says that none of his treatments would change given the positive antibody test.
Like many others have commented, I think that you should pursue an appointment with another neuro before the mayo appointment.
On a more personal note, I feel for you and your situation with your fiance. I always think that honesty is the best policy but how do you tell someone that you love so much that they are being insensitive. Even if you live with them every day they can't feel what you feel and largely can't see it either. Sadly, she won't realize it until it really knocks you down. My husband and I will be married 20 years this October and we have a very strong relationship BUT... we had to go the couples therapy for him to really get what I am experiencing. As bad as that sounds it forced him to take a closer look at my complaints and realize that they are legitimate. The biggest thing we got from that brief counseling is that he lowered his expectation of my abilities and could offer more support in my search for answers. This was all before I had my diagnosis. Once we had the diagnosis I told him that if he wanted to remain in my life that meant learning about MG. Not that I was threatening to leave him or anything but nothing else made him realize just how critical this disease is. I am confident that your fiance loves and cares greatly for you but she doesn't know that her words hurt. The only way that she will know is if you tell her. I hope that you can find the words to let her know this so that she can be more supportive and less critical.
Good luck to you and please keep us posted on your situation. I am anxious to hear how things are going.
Warmest aloha to you and everyone here.
Angie