u/Winter_Fee_9672

As I mentioned in previous posts I am not diagnosed but doctors are really thinking MG now, especially after my ER trip. Yesterday I became so weak that I could not stand or walk and kept falling to the ground. Today I am not much better, I still feel weak particularly on the left (my left leg will not hold my weight, my right can for a few minutes).

The problem is the wait time for a neurologist is months to years. If it is MG I cannot be treated until I see a neurologist. I have been recommended a walker or chair to use in the meantime time but I wanted to ask; For those of you with diagnosed or practically diagnosed MG have you ever had bouts of serious weakness that eventually got better before you were medicated? Should I put in the money for a mobility aid or is there a likelihood the extreme weakness will get better for a while?

Thanks in advance!

As my other post suggests, I’m still in the diagnosis process. I’m not sure if it’s MG but everything so far is pointing that way.

I’ve been getting progressively weaker over the last few weeks (faster than it’s been happening the last few years) and today I suddenly hit a point where I can’t even sit upright for more than a minute or two before I have to lie down again. my breathing is bad too, I’ve been prescribed an inhaler because no one knows what’s actually wrong but it doesn’t really help much.

Because I’m not diagnosed, I’m scared to go to the hospital out of fear I’ll spend 13 hours (ty Ontario health system) waiting in a seat I can’t lie down in only to be told ‘I don’t know’ and be sent home because apparently they will only test to rule out ‘dangerous’ things.

Should I bother going? Is this considered a mg crisis if that’s what I have? Sorry, I’m stressed and confused right now!

*Update*

So I spent 12 hours in emergency, they said it’s out of their wheelhouse. They’re doing blood tests, but otherwise are sending me home. They think my breathing is manageable, and can’t do anything for the fact that I can’t stand anymore. I am now scared that my inability to walk and my lack of strength won’t go away and I’ll be stuck like this for months. :(

*Edit 2*

Blood tests all normal, they only did the regular tests with the addition of CRP (I have chronically elevated CRP) and said all was normal (besides the one), and gave me advice and a note to my doctor on how to speed up the process of seeing a neurologist. I was then told to use a walker as needed and sent home.

To start off, I know that MG is pretty rare so my assumption is gonna always be on the ‘you don’t have it’ side of things. But you know the internet- it loves to throw these things at you when you’re doing research on your issues.

I have been getting progressively weaker over the last 8-10 years now, no matter how much exercise I get. Exercise always makes me waaaaaaay worse off, especially if I push it a bit (and that’s like not even doing a lot in the first place). My legs and arms are mostly affected, after walking a bit my legs feel extremely heavy. Same with arms if I use them too much. I have also found my breathing is getting worse and worse, and lately I’m ‘gasping’ a lot, like I desperately need air. I breathe extremely shallowly, but the doctors don’t care because my blood oxygen is normal. My eyes (particularly my right) droop and are worse after straining myself. I have extreme fatigue all the time and a fair bit of pain. I also seem to have chronic swelling (high repeated CRP) but I was reading that it might be unrelated? I struggle badly with swallowing and choke a lot, and that’s only getting worse.

Anyway that said, I’m not looking for a diagnosis or people telling me ‘you have it’ or not- I am going to see a specialist soon and I want to bring up testing for MG. I have had a horrible experience with doctors shutting me down so I wanted to ask the MG community what their thoughts were on how to go about asking for testing, what tests I should ask for, etc.

Any help would be appreciated.

*Update*

The internal medicine specialist denied my doctor’s request and told her to send me to a neurologist. My breathing has gotten worse over the past few weeks and so I'm being sent to a respiratory specialist, then to a neurologist. I’m more confident now that it’s someone who specializes in this sort of thing!

Thank you all so much for the help so far!! You’re all so nice!