Hi everyone,

I am a 28y.o female currently undergoing investigations for MG. I have one last test to do tomorrow (single fibre EMG) which will confirm whether or not I have MG. All the other tests I'm done so far have been inconclusive. For example I had a positive reaction to the tensilon but I also responded to the placebo for some strange reason. If it comes back that I don't have MG then my neurologist wont do anything more for me. He seems to think waiting it out is the best thing for me and that my symptoms will just go away by themselves. I tend to disagree!
I thought that by sharing my symptoms with you all, someone might be able to shed some light on my situation. I know you're not drs but from my experiences over the past month drs DON'T have all the answers.

symptoms to date:
-eye spasms resulting in complete closure of my right eye fr almost 3 weeks. I could open each eye independently but together they'd only stay open for seconds. now they're open but when i wake up in the morning one eye opens first and the other follows within minutes.
-foot and leg spasms for a day resulting in weakness in my legs (predominantly right). The more I use my legs the weaker they become. I start off walking fine but then my right leg stiffens and I'm unable to bend it as I walk. When I'm not walking my leg plants itself on the ground and I'm unable to lift it up.
-weakness in my shoulders. I cant lift them above my head. each time i try to raise them i can lift them less and less.When I rest them for a few seconds then try lifting them again the exact same thing happens -strength declines with each attempt to lift them.
-fingers stick together, unable to separate them on demand

does anyone have any idea about whether or not my symptoms sound like MG?

Hi Polly - and Welcome!!

I have a relatively mild case of MG, and so may not be the best source of info. The weakness you describe in the arms - it being harder and harder to raise them on repetitive attempts - sounds like MG. Maybe even the eye symptoms - although usually we MG'rs are at our best in the morning. Try applying ice to the eyelids and see if there is improvement in your ability to open them. This is sometimes used as a clinical MG test since our muscles much prefer cool/cold temps to warm/hot temps.

I have not experienced the spasms and stiffness you describe. And I have never been unable to move a muscle - it's just that the muscle doesn't move very well or with any strength. There is this overwhelming feeling of heaviness and, as a result, my inability to lift things or to continue stirring a heavy batter....things like that. With a few minutes rest, I can do better at the task. Hours later (or with a pill), I can do much better.

I'll be interested in what the neuro says after your test tomorrow. If he confirms MG - so be it. But if he doesn't - and you feel there is something yet to discover - go to another neuro for second opinion.

Most folks on this site have had at least two neuros...and some folks a few more than that. You have to search sometimes to find the right one.

Good Luck and pls let us know how you make out.

Sue

Hey Polly, Welcome!

I agree with Suev that it's more of a profound sense of heaviness that I feel. Oftentimes, the heaviness is so bad that I can't move my tongue to touch my back teeth. My symptoms are very severe in the morning as well (Which is a bit unusual with MG). I also have shoulder weakness, chest weakness, finger weakness, tongue and palate weakness and arm weakness.

The symptoms in my hands are kinda odd, and I'm pretty sure that I have something else going on. I have a lot of stiffness as well. I also have finger drop after typing for a bit (the last three digits on each hand just drop downward). I also have constant twitching in two fingers on my left hand. My doc. doesn't think that these are caused by MG and as a matter of fact, I had an EMG done on my left arm and he found denervation (the nerve's not really meeting the muscle). This can be a feature of MG but is very unusual, apparently.

Anyway, the way that you describe the spasming and stiffness sorta reminds me of myotonia/spasticity a bit...Has the doc. ever mentioned this to you? When you say that you can't seperate your fingers, is this constant or after activity and then it resolves?

Anyway, I hope that you get some answers soon...The symptoms you're experiencing definately sound distressing...The fatiguability sounds like MG but the stiffness and such kinda sounds a bit like something else is going on..

I wish you luck and I hope that it all gets figured out soon!
Nicky

Thanks for your responses. it's so nice to hear from people who are experiencing similar symptoms to me. I am definitely going to get a second opinion if I reach a dead end tomorrow.
As for the heaviness, I am experiencing that with my legs and arms. With my fingers, occasionally I can't let go of objects. When I go to spread my fingers out 2 of them always seem to stick together and wont separate. That happens all the time.
I was given the ice test and my eyes improved dramatically. I've noticed that I can't sustain an upward gaze as my eyes flutter and close within seconds, however this doesn't happen after I apply ice to my eyelids.
The spasms that I experienced earlier on have not returned. I can feel and see muscles twitching occasionally but they're slight and don't last for more than a few seconds at a time.

My mg was confirmed by my family doctor by blood tests for the antibodies within a week and confirmed by second blood test after second week
There are many reasons I am at the stage I am at now mostlyto do with communication between the neuro and myself.
I believe I am in overdose at the moment on pred because the neuro applies what worked before with others and has not tested all the levels of dosage of pred on the way up.
Part of the reason it took six weeks for the benefits of the steroid pred to give advantages.
Unfortunately all the disadvantages of steroid pred started straight away.
Infections each week drugs then don't work until the infection clears.
insomnia as you more than likely are in overdose.
Mestinon is the only thing giving you benefit at these early stages .
If as I did you self dose oe self diagnose you can get significant weaker by overdose of mestinon
You get breathing difficulties.
You get muscle spasms
you get eye spasms.
you get leg cramps.
you get speech problems.
Other things I did before diagnosis
I drank too much b12 and other vitamins gone
I suffered extreme stress levels hidden from daughter
(burnt out adrenial gland)
I ate fast food.
The disorder is typified by poor strength on repeatability
of muscles.
It is an autoimmune disorder.
your body is attacking itself.
Generalisation everybody can be treated this way by some steroid.
Mestinon is used to help get the brain to nerve to muscle message thru.
This is an oversimplication.
initially this is what you need to understand.
I believe my neuro went to fast.

Polly,

Welcome to the best site for MG info and support. Some of your symptoms sound like MG and some don't but MG I have noticed over the years differs greatly among everyone. Do you have double vision? trouble with your voice? trouble swallowing? I know what you mean about not being able to seperate your fingers {that used to happen to me} the twitching also happens. I had one Dr. tell me I didn't have MG but had MS, he was wrong, I knew it was MG because I was lucky enough to be seen by "the" MG specialist in NYC. You may need to see more than one Dr. to get things figured out. Have they given you any medications such as mestinon, to see it if helps you any? Please keep us updated and good luck.

Hello!

Your symptoms are similar to some of my first MG symptoms before I was diagnosed. I rarely get any of these symptoms now that I am taking Mestinon. Here are some of my early symptoms that are similar to yours:

-I had a lot of twitching and odd tingling feelings under my skin, mostly in my face and hands, but I felt this way occasionally everywhere on my body. My left eyebrow twitched more than anything else and often got stuck in a raised position. My face was stiff in some places and droopy in others.
-Sometimes I couldn't move my fingers at all and they would get stiff and stuck in a straight position (not all of them at once, usually ony 1 or 2 at a time). I remember my fingers sticking together, I couldn't spread my fingers apart at all.
-My left eye wouldn't always open, and when it would open I could not focus so I had double vision, in fact it wouldn't focus until I was taking Mestinon for about 5 months.
-My legs were weak and heavy, and I had trouble lifting them up.
-I couldn't lift my arms above my shoulders, and sometimes my arms would give out. I would be doing something and my entire arm would go limp and I would drop anything I was holding.
-I could not look up or to the sides, my eyes just would not do it.

Something important to add here is that my muscle stiffness and the tingly feelings I described made my doctor question whether I had MG (in fact he told me those symptoms just didn't fit in with my other obvious MG symptoms), but luckily for me the blood test came back positive.

MG does not effect us all in the same ways.

I hope you get this figured out and soon.

Pollyest, ARE you seeing an MG specialist?? If not, then he may not recognize WHAT you've got -- even if it hits him right SMACK in the face.

About the Tensilon test. Ephedrine and epinephrine are KNOWN to be treatments for MG (old time). Epinephrine is adrenaline -- something ALSO produced by our own bodies. It "is" possible that you were "hyped" up on your OWN adrenalin when you took the Tensilon test -- and this skewed the results -- making the placebo look like a drug. Sometimes, when we get upset, we get worse -- antibodies increase. But, sometimes, stress actually makes us better -- for a short time -- because of an adrenaline surge.

I have had the spasms -- but ONLY when I have over-used the muscles. I equate it to having had the flu -- and being sick in bed for a couple of weeks. Then you get up one day and try to go about a regular schedule. Your body is so weak that it trembles and "spasms" -- you wonder if it will support your weight. THAT is what MG feels like.

I can't say for sure if you have MG -- but, it certainly sounds possible. If you would tell us what area of the country (or WHAT country) you are in, we might be able to point you to some specialists.

Thanks for your response.fortunately I don't have double vision. Neither do I have problems with my voice or swallowing. Do those symptoms affect everyone with MG or just some? I haven't been given any medication because my Dr. wants to be sure of what I've got first. The problem is that if it's not MG then he's probably not going to do any further testing. I have a back-up Dr. for next week if that's the case. It's so frustrating!!! Hopefully will get some answers today or tomorrow. Will let you know what happens.

Hi Jana, thanks for your response. My neurologist isn't a MG specialist as such but because I have continued to baffle him he's had me see several other Drs. I was admitted to hospital for a few days by a neuro-opthamologist who was 120% certain that I had MG. The problem was that when I had previously mentioned MG to my neuro he was quick to brush it off. Ive had a very distressing year with the passing of my dad, so my Dr. was pursuing the emotional component. When I reacted to the placebo he even made me take a psych assessment just to try and prove his point.it came back clear! I did test positive to the ice test which I thought yielded the exact same response as the tensilon test, but again my Dr. disregarded it. Thankfully I have an appointment lined up with a new neurologist for next week if I reach a dead end with the one I'm currently seeing.