MG Follow-Up Study Data
 

I wanted to share some information I found. I enjoy seeing actual data about MG, especially the remission and improvement rates. These quotes are from the website http://www.thedoctorsdoctor.com/dise...nia_gravis.htm

J Neurol 1997 Feb;244(2):112-8 Abstract quote
One hundred consecutive patients with myasthenia gravis (MG) referred between 1985 and 1989 were analysed for epidemiological characteristics, evolution of early signs, delay in diagnosis, yield of diagnostic tests and effects of treatment.

The female to male ratio was 1.6:1.0. Sixteen patients had a thymoma. Ocular MG occurred in 14. Associated autoimmune diseases were found in 15 patients. In 34% of the women and 10% of the men the diagnosis was delayed for more than 2 years. In the first 3 months progression was more rapid in men than in women. Anti-acetylcholine receptor antibodies were found in 94% of the patients with generalized MG and in 29% of the ocular patients. The neostigmine or the edrophonium test was positive in 84% of the generalized and in 60% of the ocular patients. Electromyography was diagnostic in 71% of the generalized and in 42% of the ocular patients tested. Thymectomy was performed in 56 patients (12 with thymomas). Fifty-one per cent were treated with one or more immunosuppressive drugs, at any time.

After a mean follow-up of 9.6 years after onset remissions had occurred in 43%, considerable improvement in 25%, moderate improvement in 20% and 12% remained unchanged. There were no deaths due to MG. Thirty-six per cent remained dependent on immunosuppressive drugs. Medication-free remission was most frequent (35%) in the early-onset (< 50 years) group. Side-effects of pyridostigmine were noted in 34% of 99 patients, of prednisone in 65% of 49 patients, and of azathioprine in 54% of 28 patients, but these necessitated stopping the drug in only 1%, 10% and 14% respectively.

and

J Neurol 1990 Oct;237(6):339-44 Abstract quote
A multicentre retrospective study was carried out on the characteristics and course of myasthenia gravis (MG) in Italy. Data from 1152 patients, fairly representative of the myasthenic population seeking medical advice, were analysed for diagnostic criteria, clinical aspects and therapeutic approaches. Mean follow-up was 4.9 years. The disease was correctly diagnosed within 2 years of the onset in 80% of cases.

Onset of symptoms peaked in the second and third decade in females and fell between 20 and 59 years in males. At first observation 87% of the patients had generalized MG. Maximal worsening was observed within 3 years in 77% of patients. At the last follow-up, 35% of cases were symptom-free (pharmacological remission 24%, remission without treatment 11%). The more severe the disease at the first observation and at the maximal worsening of symptoms, the lower was the proportion of remissions. Steroids were given in 54% and immunosuppressants in 18%. Thymectomy was performed in 72%, mostly in women, younger than age 40, and with generalized MG.

Thymectomy seemed to improve the course of the disease, mostly in patients operated on shortly after diagnosis and those with generalized mild-to-moderate disease and with a normally involuted thymus. MG was lethal in 4% of patients, principally men, older than 40, in grade 3 or worse at first observation, with a short history of disease, and with thymona.

Susan, Thanks for posting these.

I like cold hard facts too but I still find studies like these deceptive. It's not very clear, you know what I mean? Yes, they say that 35% experienced drug-free remission (1st article) but they don't say for how long. And it was done such a long time ago.

The second article is even less clear. The fact that mostly women had a thymectomy is curious. It sounds like they must have an "alogrithm" for who to perform them on that might include mainly women. And a small percentage of patients reached drug-free remission and we don't know how long that lasted. With MG, you never know if it is temporary or not because the disease is only "on vacation."

There are some studies that speak to quality of life, which I find equally as interesting. MG is only ONE component of someone's quality of life and well-being. It involves so much more than what a disease takes away from you, including state of mind, financial situation, ability to cope with stress, etc. It's not all "interconnected" with MG.

http://www.ncbi.nlm.nih.gov/pubmed/21082698

Here is the "MG-QOL15" list. After filling it out, I realize that my "QOL" is in the toilet. As if I needed a checklist to know that.

http://publishing.yudu.com/Library/A...esources/5.htm

Hit "their" print button on the page to get it printed. It's 7 pages long. They also have treatments listed and other relevant info.

I also like looking at any articles the Oxford guys have done. ;)

I think it's really useful for us to browse PubMed from time to time. But what is more useful would be new drugs/treatments, nicer neurologists and more useful testing like photographs of our faces. Outside the box thinking and treatment helps me more than studies. :cool:

I have to wonder how the odds of remission with MG is in comparison to the odds of winning money at a casino. It all seems like a big crap shoot.

Thanks.

Annie

Yes, this is one of the papers I have been citing, but mostly this-

"The disease was correctly diagnosed within 2 years of the onset in 80% of cases".

which means that 20% of the patients, having a potentially treatable disease, that should be treated as early as possible, are not diagnosed even after 2 years!

"The more severe the disease at the first observation and at the maximal worsening of symptoms, the lower was the proportion of remissions."

I would think (as the authors of a review citing this paper did) that some of those patients, had they been diagnosed earlier (and not after more then a year), would have a better chance of remission.

"even with treatment the proportion of remissions was lower in patients with more severe disease at the first observation. the authors interpreted this as suggesting that early diagnosis and intervention may improve prognosis. only 58% were correctly diagnosed as MG during the first year of their illness, and 80% within 2 years. (M&N, april 2004, p. 484)".

Also, take into account that patients like Chloe Atkins that never fulfill the diagnostic criteria for myasthenia are not included in those statistics!
And I do not think any one knows (or cares to know) how many patients like her there really are, that do not have the emotional strength required to fight this, and just succumb to their illness and live (or die) with the diagnosis of "functional/coversion disorder".

If you take into account that about 50% of patients with a neurological illness (eg-those that are referred for evaluation in a neurology clinic, by other physicians) are diagnosed as conversion/functional disorder, because like Chloe Atkins they do not have "objective" evidence for their illness, you may have some possible idea of the extent of this problem.

AnnieB,

Thanks for sharing the info. I really like the QOL (quality of life) form.

I found it depressing to fill out the MG-QOL, but at the same time it makes me better aware of just how much MG has changed my life. I think I often try to deny just how bad it is. I think it would be helpful to fill out this form occasionally, for myself.

The good news is that after filling out this form and comparing it to what I think I would have marked when I first got MG, I have improved in three areas. My eye troubles are much less. And, mostly due to change of habits, I generally don't have trouble with personal grooming. Thirdly, I have much less trouble walking, I think this is mostly because I have learned to walk more slowly and carefully...I do have trouble if I try to walk fast, I still run into things, trip or lose my balance.

I have thought about this form and I am considering using it to determine which area of my life I need to work on. Some of these issues can be overcome by change of habits. It takes a lot of time to change habits and learn new ways to live. I know I am still overwhelmed with all the issues MG has brought into my life (one of the questions on the form) and thinking about it like this, by breaking the issues down into categories, is helpful.

Today I decided that I am going to come up with my own list using this QOL questionaire as a starting point. I really need to find a way to make my life better. I feel as if I spend every day taking pills and resting, planning my whole life around my MG symptoms. It's miserable. Everything I have worked for all my life is gone, I need new goals, something to look forward to ...

I wish there were better treatments and diagnostic tools...
I think having nicer doctors would be the best improvement of all!

Re: QOL: I think mine has improved since I stopped ending up on the floor so much. I'm not stronger, but I have learned somewhat how to avoid collapsing. When I am that weak, I just need to get to the nearest couch or chair before I go down, and I do that by locking my knees and walking with stiff legs. That works because the reason I end up on the floor is that when I bend my knees, even just a little to take a step, I don't have the strength to straighten up again--so I go down.

Abby

Yeah, but you guys, neurologists say you can live a completely normal life with MG. :Noooo:

Finding myself in mainly the 4's and 5's was depressing. I can be in denial about it all on a daily basis but to see it in black and white is too real.

AnnieB, that's what my neuro said...I still haven't figured out how a person is supposed to live a normal life, because nothing is normal about MG. I like the shaking-the-head-no smiley.:D

Abby, I am like you...I don't think I am generally stronger, just learning new ways to live and to react.

This is a question that really bothers me. how many patients do live a normal life with MG? and by normal I mean real normal.
Because it makes a big difference, if people like me are a very small minority- a very rare extreme of a relatively rare illness, and then it is very hard trying to convince of the importance of finding better treatment approaches, or if most people with MG are like that.

I am not sure any one has the answer. I am also not sure that there aren't many more patients with MG like me (and Chloe Atkin's book made me think it ever more) that don't even know they have MG as this is not even considered, or that their MG is "ruled out" even if it is suspected.

alice

After I had my test, my husband was in there with me, he asked the doctor who gave the test how will this affect me if it came back positive. He said, " she can live a normal life as always. I have patients that still play football, baseball, and their life has not changed." They are better than I am or either I am more of a whimp. Going to work everyday is just about all I can do. Cooking supper, cleaning, etc before bedtime is out. That certainly isn't the normal life I had before. I ask the same question, what is normal. I missed the boat somewhere. :) Desert Flower. I can relate to your post. Something has got to change. I'm tired of being tired and trying to find a better outlet. I'm just tired of people at work thinking "get over it." By gosh, I am trying and heaven forbid don't even think about saying "I am really tired today." Anyway, everyone try to have a good day today and take care of yourself. busy

The fact that someone with MG plays football or baseball (or tell their neurologists that they do) does not mean that they have a normal life.
I lived a "normal life" for more then 3 years- I continued to work full time as a physician, bring up my two sons, and even go to conferences abroad. but, my life was very far from normal. I would frequently "crash" in the middle of clinic, or have one of my patients ask why I ran up 8 flight of stairs, instead of taking the elevator (needless to say that I reached this level of shortness of breath just from walking from the elevator to him room). etc.

I recently found out that when my WLE neurologist admitted me for plasmapheresis and steroids, he wrote to the plasmapheresis team that if there is no hospital bed available I could easily have it as an out-patient as I am working and was able to fly over, so obviously am not very ill. At that time I was officially working but not much more then that, and required respiratory support after every minor effort, and obviously during a plane flight.

so, I now take it with a grain of salt when neurologists tell me about their patients that play football and lead a completely normal life.

it is true that you can do almost anything you want with MG, the only question is what is going to be the price. so possibly that avid football player spends a few days in bed after each time in order to recover.

the president of the US came to visit Russia. But, what he was most impressed with was a cage in the zoo in which a wolf and a lamb were happily sitting together. How do you do that? he asked. how did you get those two animals to be in the same cage so peacefully. Oh, this is very easy they replied. it depends on how many lambs you are ready to sacrifice.