my first MG symptom
 

I thought my first symptom was a collapse (my legs just couldn't hold me up any more), followed by months of steadily worsening trouble with my balance because of weak side muscles. But one of my doctors said that I probably had it for months before that collapse, with symptoms too subtle to notice.

Looking back, I do remember one thing. For several months before the collapse, I began to sleep much more than usual. I'd go to bed at nine, and sleep until eight--very deeply and restfully. It was wonderful, actually, since I've always been a bit of an insomniac.

It's not really clear to me that this is MG-related, but it was weird.

Abby

Hi Abbie!
 

Abby, I've been really sick and busy, or I would've responded earlier.

There are a couple of PubMed articles on that. The first sign of MG is often more sleeping/napping. It's like when a car runs out of gas, it simply stops working well or at all. Acetylcholine makes all of our 640 skeletal muscles go. When that is running on empty, our bods just don't want to or can't move. ;) That makes our entire body worn out and it puts us to sleep.

Hope you're doing ok. You too, Erin.

Annie

Thanks, Annie. I have no idea why it makes me feel better to make sense of all of this--to put together the pieces of the puzzle--but it does.

I hope you're OK?

Abby

My first symptoms started when I was about 20. I noticed I would have a difficult time swallowing food - or get tired face muscles when chewing. I just assumed everybody else felt the same way? Then I started having what I called "spells" where I felt very tired and almost flu like - would lay down for about 24 hours and feel better. These spells hit every few months, than weeks, than every week, then during the week over the next 30 plus years.
I really started to have trouble when storm fronts came thru with sinus pressure - balance etc - winters were worst.
Extreme weakness came on in last 5 years or so - had tremors and asked Dr he said not to worry - what it turned out to be was shakiness from muscle weakness!
Neuro said since I had symptoms since early on that may be a good thing as it came and went and was not fast acting??? I dunno? :rolleyes:

First MG symptoms
 

My first MG symptoms were more then 20 years ago, when I was a med student. I started finding it hard to tell my son his bed-time stories in the evening. And then started being more tired then usual during the day, sort of dragging myself, instead of walking fast or even running up the steps as I used to do.I didn't think I was ill, just a med. student with a 2 year old boy.

A brilliant friend I was studying with noticed that I had a slight droop of my left eye-lid and that the book I was holding was gradually going down. The next day after school, she brought one of the neurology residents to see if her diagnosis was correct. He took me to his office and started asking questions to which I answered-yes. Are you extremely tired in the evening? do you sometimes find it hard to hold something (yes, pick up my son. just thought he was growing heavier), do you find it harder to climb steps (yes, I could run a few flights and now I can hardly go up slowly).

He then did a brief neurological examination, took some blood tests and told me he wants to do a quick bed-side test. I was a medical student so I realized what he is doing. But, even though, I was surprised at how great it made me feel. I didn't realize how weak I was, until I felt the difference.
He too saw it. After a short while it totally faded. He took out a box of mestinon pills and gave it to me- Your friend is right. He said. You definitely have myasthenia, and this will make you feel much better.

A few months later, I was hospitalized because of a severe exacerbation. After a day of bed-rest in the hospital I was doing much better. The MG expert that came to see me, told me (and everyone else in the room) that my friend and the neurology resident were over-jealous and just made a diagnosis of something I didn't have. you don't have antibodies and you have a completely normal EMG, he said. This could be in ocular MG, but not in someone with such severe symptoms as you describe. And it all disappeared within one day. You do not have myasthenia, He said- you have medical student's disease and an overzealous friend. And I didn't question what he said. Just continued to take mestinon as "placebo" for a few more months. Consulted one more MG expert (as my friend kept insisting on her diagnosis, and told me I need to get at least one more opinion), who thought the same. I gradually had less and less of those symptoms, needed less mestinon and totally resumed my normal life. Totally forgetting this episode for more than 15 years.

Wow Alice, that is a really amazing story. In the above quote, what is the bedside test you are referring to? Did he give you a Mestinon pill? Was it a Tensilon trial? If it was Tensilon, I was under the impression that had to be done in a hospital. Can they do it in the doctor's office?

Thanks,
Tatia

Hindsight is ALWAYS 20/20 - I'd probably been having "symptoms" for much longer than I ever realized (my neuro said most people who get an MG diagnosis have probably had it a very long time).

I went to (hopefully) get plastic surgery to correct my drooping eyelid - ended up with a neurology appointment instead.....

I was one of those people who never felt energized after exercising (even when I was young and "in shape") - I was ALWAYS tired afterward, and couldn't understand why. Right before my diagnosis, I noticed that I was getting tired folding UNDERWEAR; I remember thinking, "Boy, you really ARE out of shape!"

In a way, the diagnosis was a relief - even though it wasn't even on my radar at the time - it explained so many things, and I could finally allow myself to NOT feel guilty for being so tired all the time.....

It was a tensilon test, and it was in the hospital. It was a teaching academic hospital, and that was why my friend could easily get him to come and see me after class. I always say that I had the most rapid diagnosis possible (before I even realized I had any symptoms) and the most delayed diagnosis, 20 years later when objective evidence for my illness was finally found.

I'm new here and newly dx - but I've been doing alot of reading now (thanks for all the leads btw!) and I'm sitting here in utter amazement - this (MG) has obviously been going on for some time for me (probably 5-6 years or better).... and yet I had never heard of it before or even thought it odd what was going on (kept blaming stuff on getting older or just being "weird")....

even though it may not be the "first" symptom - looking back now I think it might be one of the tell-tales that maybe something was wrong: I was in an MVA in 2006 - in the ER they gave me morphine - within 45 seconds I had a doc screaming at me to take a breath and I couldn't find the strength to breathe to tell him about the wet sandbag sitting on my chest and arms (no injuries there though - just my arm broken) - I still don't know what all they shot me up with (but I was definitely a pincushion!) but afterwards the doc told me to NEVER let anyone give me morphine - I was allergic to it.... Thing is - I had never had morphine in my life / hence NO exposure to it which sort of contradicts anaphylatic shock/allergy if I understand it correctly....

I have similiar (although less dramatic thanks goodness) reactions to other pain meds and stick to aspirin or non-narcotics period and have since my mid/late 30's..... I won't even use cough syrup with codeine in it,... which has gotten me some weird looks / reactions when I've had to go to a doc: from "what do you want - the big guns like oxy or demerol for a cough" to stunned looks when I specifically refuse a narcotic prescription (even for my cluster headaches) and then ask for a non-narcotic alternative as I know my body doesn't tolerate narcotics well - all of this before I even knew what MG was let alone that I had it!

Alice,
How similar parts of your story sounds to mine. My first symptom that I noticed was actually double vision. The neuroophthalmologist I saw said it was definitely MG--he was quite sure, but then the antibody test and EMG came back negative--so he dropped the whole issue and basically said that there was no way I could have MG, unless is was just ocular. He said it was probably a congenital 4th nerve palsy.

I went about my life and just thought my heavy arms, legs, and double vision was part of aging. I even ended up in the ER with what was probably a MG exacerbation--extreme weakness, increase dbl vision. This resolved somewhat after resting in the ER all evening. Though sxs continued for 7 years before I was diagnosed by tensilon test and response to mestinon, I had the occasional neuro tell me that it probably was MG, but there was "no decent treatment" for it anyway. So no treatment is what I received until about 18 months ago.

I've had to retire b/c I was unable to work due to my double vision and unpredictable other symptoms. I do feel better since retiring, but I feel that I've lost a lot with the delay in treatment. I thought 7 years was a long time to wait for treatment--I can't imagine 20 years!
Cate

Ravenred,

The morphine problem is definitely part of my family history. I am allergic, had it twice for two days after my C-sections, fortunately just the usual rash and itching. My dad became totally intolerant, couldn't breathe well, and abdomen swelled which contributed to that problem. Despite a documented history of problems and a big sign he insisted be put on his bed, they gave him morphine in the OR for knee relacement, didn't tell him and he had the abdominal problem again and had an ileostomy for the rest of his life. Two years after the surgery, he was diagnosed with MG. So it seems narcotics are really out for us, and those people with the strange looks better not try to sneak one by us. A friend said the only medic alert he would wear was intubate for MG, maybe you could wear one that says respiratory collapse with morphine. nc

Cate,

There are similarities and differences in our stories.

My obscure symptoms gradually resolved on their own, and I had no MG symptoms (unless you think being extremely tired after working for 36 hours in the hospital, and then being with a 10 and a 3 year old who understandably want your full time and attention is an MG symptom).

They returned 15 years later (6 years ago).

The major similarity is that we both have normal EMGs, which some neurologists still believe can't be in MG. ( I say believe, because there is nothing in the medical literature to support this notion).
Such neurologists feel you have "tricked" them if you have very obvious clinical MG symptoms and a normal EMG.
They find it easier to believe that you deliberately (possibly sub-consciously) stop breathing, collapse in front of their eyes etc.
And some will have no problem showing you their resentment for "tricking" them like that.

This is beautifully (and sadly) described in Chloe Atkins' book.

I got out of bed one morning and fell flat on the floor. I thought my legs were asleep. That was my first sign too. However, when we looked back, I remembered being so sleepy. I slept all the time for about a week prior.

extreme stress is what "brought out" my MG.
When my son relapsed with cancer I had to spend many hours awake beside his bed and I got double vision so bad that I was being sick. Luckily I was in the area in down town Toronto where there are many world class hospitals. I remember getting the diagnoses and getting put on Mystinon and the symptoms, with some much needed rest, my vision got better but the double vision stayed to when I look on both sides of my vision. Now it is generalized.


randy