Quick onset of MG vs. Slow Progression?
 

I was wondering if the majority of people on this forum suddenly developed their MG symptoms, or if they slowly noticed symptoms over a period of time?

Also, I was wondering if there was any correlation between disease severity for people who developed MG quickly versus those whose symptoms slowly progressed... For example, do people who are blindsided by the disease generally have a more severe case versus those who gradually developed symptoms over a long period of time? I know everyone's experience (and especially with Myasthenia) is quite different, but I was just wondering if there was any general relationship between how quickly people develop this disease and how bad it will become in the future.

I appreciate everyone's input and opinions!

Do you have MG? Can you share your story first?

All I can say is that, no matter how quickly it comes on or not, the severity of MG is unpredictable.

Hmm, I'm not sure how to answer your question. I remember the first symptom I noticed (I collapsed). After that, I just slightly lost my balance two or three times a day for a few months. Then it gradually got worse over the next year.

I'm not sure if you'd say my disease was mild or moderate. I haven't had any breathing crises, but sometimes I get weak enough that I can't walk at all, but never for more than a couple of hours at a time.

Abby

My first symptom was fatigue. I had it for several months. Then I slowly couldn't carry things. Started with heavy things and ended with not being able to hold a glass of water. With my legs I first couldn't skate as long as I was. I was training to start roller derby. My knees felt weak. Then I could no longer dance, run, jog. All I could do was walk. One of my eye lids wouldn't open all the way. Everything just started progressing after that. I couldn't chew food after a period of time. I couldn't talk because the muscles in my mouth were tired. I started seeing double and halos on every light. When I was finally diagnosed the bottom part of my lungs were no longer expanding. I was put in the hospital the week of thanksgiving 2008. It took about a year to get that far. I started with an ivig treatment. They didn't want to just start me on prednisone. The concern was that I would take a step back and get worse. I was on prednisone for a year. I started with around 100mg every other day. I also was taking mestinon. After a year of treatment I am pretty much medicine free. I only get fatigued some days. Nothing more. I hope this will last forever.

mt onset was so slow tht my doctor went from thinking it was stress related due to me leaving for school, then he thought it was a food allergy, then asthema, then he was finally dumbfounded enough to send me out of his office to an ear nose and throat guy (yea random for this disease) and of all the doctor visits i had he would be the guy to dx me after like 2.5 yrs of not knowing what was wrong with me

Hii AnneB3,

I was just diagnosed with MG last month, but have had symptoms for more than a year. Still trying to understand it all, and consider my symptoms fairly mild right now....started with a droopy left eyelid that comes and goes, and general fatigue. I also have muscle weakness in arms & legs after activity, and have a little trouble swallowing from time to time (which started a few months ago). Sometimes I feel like I can't catch my breath or get a full breath of air, but it's hard for me to tell if it's just anxiety or part of the MG. This happens mostly at night when I'm trying to sleep, and I wonder if that's when I am worrying more b/c of the stress of the diagnosis.

I'm hoping that my symptoms don't worsen, and am just trying to do my research and prepare myself for whatever the future may hold. Currently taking only Mestinon, 30mg every 3-5 hours.

Take care

My MG appeared suddenly -- double vision while I was literally driving. Wouldn't go away and then droopy eyelid (just right side). Diagnosed with MG within 3 weeks thru positive bloodwork (AChR). Once CT was done it was discovered I had a thymoma. Had thymectomy and radiation treatments. I currently function pretty close to normal with just Mestinon. Consider myself quite fortunate compared to others.:)

Mine was diagnosed when I noticed my eyelid drooping (only able to "diagnose" it with a Mestinon trial, as none of the tests came back positive).

However, my neuro said that most people have symptoms for YEARS before they get bad enough for them to see a doctor, and even then it can be several more years of ruling other things out before MG is diagnosed.

When I started looking back, I realized that all of the things that I had attributed to age, weight, or sheer laziness were probably early signs of MG.

Then a couple of weeks ago, I was going through some old pictures, and realized that my eyelid has been drooping for at least 10-15 years, but it was so slight as to not be recognizable as much of anything.

It's possible that what seems like sudden and severe MG may just be the culmination of many years of seemingly unrelated symptoms that were chalked up to something else entirely. I could be wrong.....

I'm just glad that I got my diagnosis when I did, as I was starting to think that I was really out of shape, and needed to start an exercise program! Now, I don't feel as bad telling people that I am too tired to do something.

I also know to pay attention to my body, and not ignore the signs that it is giving me that I am doing too much and I need to slow down. I hate the disease and wish that I didn't have it, but at least I KNOW that I have it, and I don't feel guilty for not being able to do things that I would have thought I should have been able to do had I not known that I have MG.

MG is not one disease.
There is autoimmune MG and Congenital/genetic MG.
Each of those can be further subdivided. Autoimmune to AchR+, MuSK+ and yet unknown antibodies. (some also would add Rapsyn, and other antibodies that have been found in occasional patients).
Congenital to: AchR-fast and slow channel, DOK-7, Rapsyn, MuSK, CHAT and many more. Some of which have not yet been discovered.

The course, response to treatment, and prognosis of each of those is very different. Some have a very slow/intermittent course, others have a more hectic course, and yet others have a gradually progressive course. Response to immune modulating treatment is also variable, as is response to AchE inhibitors (such as mestinon) and other symptomatic treatments (such as albuterol, ephedrine, 34DAP and others).

Further more, the same disease affects different people in different ways. The threshold to seek medical advice is also different. Some people would come to their physician with every minor ailment and others will seek medical advice only when their life is in imminent danger, and there is a large spectrum in-between those two extremes.

I am not sure that non-specific symptoms of fatigue are MG-related. It is very likely that there is some element of what is called "recollection bias". this means that you interpret the past in view of the present.

What I mean by that is that if someone for instance has a heart attack, he is more likely to think that chest pains he has experienced prior to that, after exercising in the gym, were in retrospect ischemic heart disease.

On the other hand, a young and healthy person, asked the same question would more likely think that those are due to straining his chest muscles in the gym.

That is why I believe it will be very hard to know the answer to your question.

Also, take into account that patients who are rapidly diagnosed, have an excellent response to treatment and lead a nearly normal life, are less likely to participate in a patient support group like this one. So, they will be significantly under-represented in your poll.

I can tell you my own experience (even though it is probably on the extreme of unusual). I had the shortest diagnosis of MG (before I myself realized some thing was wrong) and the longest (20 years later). I had a spontaneous remission (that lasted for 15 years) and a refractory disease that doesn't seem to respond to any commonly used treatment. 20 years ago my illness didn't exist (because MuSK was discovered 10 years later).
This also explains to you why I chose the pseudonym Alice.

Our stories are very similar; I was diagnosed in May with a mild case of MG. I struggle with the same thing - it's really hard to know what's MG related versus what is anxiety or something else. Last night I went out to dinner with friends and I was laughing and smiling a lot (a good thing!) but my smile muslces actually started to feel tired. Was I just laughing/smiling more than usual or was it MG? I've had the same breathing thing too - feeling like it's hard to take a full breath but not sure if it was MG or anxiety. I'm trying to listen to my body but since I'm young and otherwise very healthy and active, I don't want to make more of this than it is (since I was diagnosed with a mild case - I know that for others MG is certainly a very big deal and not to be taken lightly), if that makes sense. Maybe we can share tips as we start to figure it out :).

I'm only Mestinon right now too. The uncertainty of what MG may bring in the future is a challenge but I've also tried to use it as motivation to take the absolute best care of myself that I can. I am strict about going to bed on time, I don't drink, and I eat only whole foods. Those have certainly been really positive changes for me.