Concerned I have MG / seek opinions
 

Hi all. Hope everyone is well and looking forward to the festive season.

I have been to a few other health boards as I have an ongoing health problem that more than a few people have suggested is MG. I'd really like to know your thought and opinions. Whether you share any of these symptoms? Does it sound like MG. I have been referred to a neurologist but havent heard anything back yet and suspect it may be a few months.

Background
Im a 35 year old male of medium build and height. In september I have an acoustic neuroma removed (brain tumour). I have spoken to my neurosurgeon and he has said that there is absolutely no way my symptoms are related to the surgery.

Onset
For two weeks after my surgery I was very ok. Then I developed foggy feeling in my head and had eye pain and a conjunctivitis like thing going on. The 'infection' went, came back, and has now gone again. I'm left with the dizzy/foggy feeling. Its like every time I move my head everything follows a fraction of a second later.

I have the following symptoms:
Generalised muscle weakness that has come on over several weeks.

Muscle burning whenever I tried and do repeated actions such as flexing my foot up and down. Even typing at the speed I am used to makes my fingers and forearm muscles ache.

Stiff fingers.

If I wake up in the night I especially feel weak, tingly, sort of pins and needles in my hands. Find it hard to even open my eyes.

My achilles tendons are espcially stiff if I stay sat for any length of time and one of my calfs is very stiff too.

I have generalised twitching (fasciculations). I know this is a symptoms of ALS but the people I have spoken to say its not that (come on too fast and fasciculations normally start in one place).

My muscles are tender if I push my fingers into them.

My breathing feels hard the more I do stuff. Not like I'm short of breath. Sort of like I cant breath deep.

I dont feel tired, I just feel like my strength has gone. I feel much better after I've had a long rest. I feel almost normal in the mornings.

Sorry for the long post and thanks for taking the time to read and reply. Ian x

I should add that at night my eyes seem dry and sore.

My wife tells me I should mention how variable this all is. Like one day im ok all day and the next minimal activity just about does it for me. Activity definiately has an affect on me, and I guess thats why people think it might be MG.

It does not sound much at all like MG. Pain, tingling, burning, conjuctivitis, stiffness are not major symptoms of MG. I'd look more toward MS, lupus, schleroderma, other things, but not MG.

Good luck.

I do not know whether it is MG or not, but I think your surgeon's answer is on the easy side because one of the circumstances which could trigger MG is anesthesia and the use of antibiotics, some products can exacerbate MG grounds.
That doesn't mean that your surgeon responspbility may be invoked…
Why would it take so long to see a neurologist?
Maurice.

I should clarify i mean the kind of 'muscle burning' you get when you exert the muscles.

Hi Ian,

I hope you figure out what is going on - just thought I'd add my 2 cents. Although pain isn't associated with MG (thank goodness) I do think there is a certain amount of sensitivity, particularly when your muscles get fatigued and overworked. The inability to use your muscles properly is a sensation that is really hard to quantify - I've always said that I feel sort of numb and stiff - like you were describing with your fingers, but others disagree with the way I describe it. I guess the most important thing is to not discount any symptom just yet and try to see someone as soon as possible. A lot of people seem to have started experiencing symptoms of MG after surgery so I agree with Maurice as well - your doctor's dismissal that it could not be related to the surgery seems overly simplistic.

Anyways, good luck and let us know when you find out anything!
~Kathy

Hello!
 

Spelbound,

How are you? Are you OK? Have you heard anything from your doc?

When you get some time, please let usknow how you are!

Erin:D

Spelbound,

I certainly hope you get the answers you are looking for. You have many symptoms-some I can relate to (muscle weakness, some numbness, onset after surgery)-but many of your symptoms I do not believe are associated w/ MG. However, we are all different in a lot of ways. Keep advocating for yourself-"the squeaky wheel..." Anyway, good luck.

Nancy Lee