[alice md]

Osserman described myasthenia in 1200 patients in the 60s.

he learned about this illness from those who knew it best- the patients.

much of what he has observed and written has apperntly been lost.


so I thought I would copy some parts of it for you-

p.500-inspiratory distress may be the first recongnized sign of MG, whether the dyspnea is primarily inspiratory or expiratory depends on the muscle groups involved. With diaphragmatic involvement the dyspnea is inspiratory, when the intercostal muscles are involved it is primarily expiratory. In milder cases dsypnea occurs only during exercise. Maximal breathing capacity diminishes out of proportion to the decrease in vital capacity.

Sensory changes both in involved and uninvolved muscle groups are frequently present in myasthenia gravis. Patients usually have little discomfort in the morning, but the pain becomes more severe as the day progresses. Frequently rest of anticholine esterase medications, will give relief. The pain in part may be due to the extra effort required to maintain posture with the weak muscles. Other sensory changes are headaches, ocular pain and parasthesias of the face tounge lips or extremities. About 14% of patients will experience sensory symptoms at one time or the other..


this seems to be the part, modern neuros remember best-

p. 530- Specialists in MG, are often called upon for advice to help in the care of the patient during intercurrent disease…as is common in other chronic disease states, the severe hospital cases described in previous sections, often give a skewed picture as to the severity of the disease in the total myasthenic population. The overwhelming majority of myasthenics lead a useful productive life with only minor deficits… Any chronic disease with this impact seriously alters the fabric of life with resulting emotional and social maladjustments.

alice

[Joanmarie63]

Alice,

Thank you for posting this I remember when I was DXed many years ago my Dr. told me there was no pain with MG, but I am here to say he was wrong, I was so happy to find this site because for a while there I thought I was crazy. LOL

[Nicknerd]

Thanks for posting this, Alice.

Whenever I come across info. from the 60s re. MG, most of it is right on. It often discusses patient experiences, which I can relate to very much. They talk about the emotional impacts of the illness and yes, the pain that comes along with it as well. Sometimes old is gold.

The one type of pain/stiffness I've had for ages that I've always questioned is my TMJ. That stiffness has been ongoing for years. I know now that it is somehow related to the MG because after a plasma exchange, it goes away for the most part and isn't as bothersome.

[bluesky]

It breaks my heart that this man put so much time into understanding mg from the patients' perspective - and it was lost! Aaaaarrrrggh!!!

Where can I get hold of this? What's left, that is. I would love to read everything he wrote about mg.

Ally

[jana]

Alice, is this what you are talking about? Are these medical journals gone/missing?

http://www.ncbi.nlm.nih.gov/sites/en...%5D&dispmax=50

[bluesky]

Originally Posted by jana

Alice, is this what you are talking about? Are these medical journals gone/missing?

http://www.ncbi.nlm.nih.gov/sites/en...%5D&dispmax=50

I found a place that will send me a print copy of the review, but they just emailed me that it will cost $60. Is the reviewed posted anywhere?

Ally

[jana]

Originally Posted by bluesky

I found a place that will send me a print copy of the review, but they just emailed me that it will cost $60. Is the reviewed posted anywhere?

Ally

Ally, I don't know. I just did a Google search on Kermit Osserman and found this. I wonder if you happened to live close to a medical school -- and could use their library (are you in the states?) -- you might be able to see this and make a copy. I believe it is in the Mt. Sinai Journal of Medicine (???)

[AnnieB3]

Alice, Thanks for bringing this up. Way back when, doctors used to be more interested in the "science" of disease instead of the "drugging" of disease.

After my B12 deficiency, I went to a couple libraries at a local university to read up on it all. Thomas Addison, a doctor, who is best known for discovering Addison's disease, was that kind of doctor. He also discovered pernicious anemia. There are these amazing descriptions in old books of the clinical presentation of diseases that are awe inspiring. Paying attention to the details makes all the difference. His description of a B12 deficiency would make anyone exhausted. It's detailed, long and a run-on sentence that spans about two paragraphs! And he wrote it five years before he died, still interested in science. No wonder he discovered two diseases. He was paying attention.

And now there are those snippets of info in medical books that many medical students see as "the only knowledge" about a condition or disease. As if what it's like to live with a disease can be reduced down to a paragraph or two or even a page or two.

And when doctors don't listen or don't think about things like MG patients having muscle pain, it gives us other kinds of pain (mental, emotional)!

I don't have the energy to go to libraries anymore but it is often worth it.

Annie

[bluesky]

Originally Posted by jana

Ally, I don't know. I just did a Google search on Kermit Osserman and found this. I wonder if you happened to live close to a medical school -- and could use their library (are you in the states?) -- you might be able to see this and make a copy. I believe it is in the Mt. Sinai Journal of Medicine (???)

Yes, that's right. Here's the pubmed citation:

http://www.ncbi.nlm.nih.gov/pubmed/4941403?log$=activity

but there's no abstract.

I do live near a medical school but I'm so exhausted I'll never make it. I haven't been able to get out of the house for days. Even making a meal is overwhelming. I do have a doctor's appointment on Monday which I'll get to even if someone as to drive me and wheel me in and I'll bring the citation and ask her how I can get it. Maybe she has a secret, doctor way.

It seems like the medical community stopped paying attention in the late '80's. I've found a little bit of research at that point on cognitive problems and mg and then the whole thing was completely dropped. When was it and how was it that the good research that was done earlier was discarded and just the narrow, narrow description in a medical text was taken as the gospel? Or is that just my imagination?

Ally