mg symptoms
 

Hi all,

Was recently (about two weeks ago) been given a tentative diagnosis of myasthenia gravis after a lengthy series of referrals (lol.) MRIs were normal so I don't have a thymoma or anything. Currently waiting for bloodwork to come back. SFEMG appointment in december, etc etc.

My question is... well, I've obviously seen the various list of symptoms and maybe some of them are self-explanatory (ptosis, blurry/doubled vision) but I'm having a hard time conceptualizing what's meant by "muscle weakness" and "difficulty swallowing."

For muscle weakness, do you generally find that it means that whatever parts of your body simply get tired/unable to support weight? Or is it more like cramping/soreness after minor exertion? I'm just not sure if I'm experiencing Symptoms™ or just... weird cramps.

For "difficulty swallowing"... well I just have no idea. Can any of you please describe how this feels? Is it like a tight throat? Globular sensation? Again, it's hard for me to say if something is a Symptom™ when I have no idea what the term is supposed to mean.

Hi cosmoe

Welcome to NeuroTalk :).

The MG forum is very active (I have no personal experience of it) so I am sure that members who do will be able to offer you support and good ideas.

Best wishes.

Hi, cosmoe. I'm sure all of this is a bit overwhelming.

The best way to determine weakness is to do an activity, and then compare how you were before the activity and afterward. MG is all about weakness that becomes worse with activities and (relatively) better with rest and drugs.

How do your legs feel after walking a flight of stairs? How long can you hold your arms out in front of you? What do your muscles feel like after doing other activities?

Muscles that are weak can cramp. But that is a secondary symptom of MG. The primary one is muscle weakness. If muscles become very weak, they can spasm. That spasming can cause muscular pain, but that is less common (though more common in those who don't have a treatment yet).

Swallowing difficulties are varied. Yes, that can feel like throat tightness. You can have trouble swallowing liquids, in that it feels as though you can't swallow to get the liquid down. Food can feel as though it becomes stuck and won't go down the esophagus. The jaw can become weak, so that chewing food is harder.

The head and neck can become so weak that holding up the head is difficult, and people may need to rest their head on their hand/arm or against a chair/couch.

Does that help at all?

If you do become worse, before you have a final diagnosis and treatment, please don't hesitate to go to the ER. Did your doctor even give you a trial of Mestinon (mess-tih-non)?

MG becomes worse in hot weather, and in cold weather for some people. And it can be hard to tell when the body becomes a lot weaker. You can try squeezing someone's fingers and they can tell you if you are doing it well or not. You can hold your arms in front of you and see how many seconds you can do that. But the best way is to see a doctor! ;)

Are you short of breath at all?

Please let us know if you have more questions. I hope they'll confirm this soon, so that you can have more help.

Annie

That helps a lot, thank you! I was given a mestinon trial & it seems to be pretty good, but my symptoms were already very intermittent (and I was pretty out of shape in the first place), so it's hard to tell.

I do think my neck is getting sore more often but it seems like there's a lot of other things that could be causing it... though that could just be the denial talking, lol. And I haven't noticed any unusual shortness of breath—though I also haven't been doing much that would cause it in the first place :p

I'll try some light exercise and see if it's harder for me than usual, but you're right; doctor is probably the best way to tell. Thanks again for your response, I really appreciate it!

For me, muscle weakness is not how strong I am, but how little endurance I have. I can still pick up and move a 40 pound box, like from floor across a room to a table. But, if I have to hold that box while I wait for the dog to get out of my way, or someone to clear a space on that table, my arms start screaming with the effort.

I can reach up into the cabinet to get my preferred cups (due to hand-tendon injuries, we got me special, tall and thin plastic cups.) But, if whoever put them away has stacked them together, or blocked them with other stacks of the regular cups, so that I have to keep my arms reaching up while I move and separate cups to get mine, my arms start screaming that they are too weak to sustain the effort. So, I bring them down, rest half a minute (because I am impatient when all I want is to simply get a stinkin' cup) then reach up and try again until I either get the cup, or have to drop them again and wait to try again.

When a doctor, or my physical therapists, does the standard 'strength tests' of push-pull-resist-raise-lower, I pass easily because they only test for a couple seconds each movement. If they went longer, I'd have to give up. And by the time I leave such an appointment, I am developing pains from overexertion, I have often strained muscles from the efforts, doing more than I am actually capable of.

So, that's some examples of what muscle weakness may be like.

I need to say that winic1 has not yet been diagnosed with MG. Sorry, winic1, but that's true. You might have MG, but you have more symptoms of pain than MGers do (which points to an inflammatory condition).

I just don't want cosmoe to be mislead. I hope you understand.

Annie

I do understand. For full disclosure, I haven't been diagnosed with ANYTHING yet. And won't be until I finally show a positive blood test, or move to a place where the doctors are better.

Actually, my ophthalmologist has diagnosed me with MG. But the ophthalmologists here are not part of the major medical corporation that owns the GPs and most everyone else in the area, they are still independent. So the GPs and the rest will not accept or record a diagnosis by someone who is not one of their own. They do not even communicate with "outsiders."

But do my descriptions help present one picture of what "muscle weakness" can feel like? Because that was my intent in contributing here, not deception or butting in where I don't belong.

winic1, I did not mean to offend you in any way, nor insinuate that you did not belong here! But pain is not an essential part of MG, even though it can be a secondary symptom. I just wanted to clarify that for a "newbie."

What you have been through is horrible. The way you have been treated by "professionals" is truly inhumane. Please accept my apology if I offended you in any way.

Annie

I am newly diagnosed Ocular Myasthenia Gravis. Mine began with stacked double vision. It took me a couple of neurologists to get a diagnosis; but you have gotten the right test-SNFEMG. My vocal cords are weak making my speech "hoarse" sounding. I also choke on my own spit occasionally. I have generalized muscle weakness; but part of that is not exercising. I think everyone's symptoms are subjective for the most part. What is yours is yours.

thanks guys! it turns out my own diagnosis is, uh, a little messy; the ophthalmologist I originally went to thinks I have horner's & I'm getting shunted around a little while I wait on the sfemg & bloodwork results. The neurologist seemed pretty convinced, but the ophthalmologist really isn't buying it, so... I guess we'll see?

honestly at this point the not knowing anything for sure is worse than any of the potential diagnoses lol.

thanks again though! all your responses are really helpful.

Cosmoe, that sounds encouraging.

The information here about Horner's syndrome might help you Horner's syndrome | Genetic and Rare Diseases Information Center (GARD) – an NCATS Program .

Annie - this thread in combination with a an "extreme muscle weakness can cause spasms" has sparked my curiousity, re: pain from pelvic floor spasms which I mentioned in a reply to my Newbie post. My PT has determined I *definitely* having mega pelvic floor throbbing spasms which tend to ease when I am stronger. The trigger point is always worse on my more myasthenic side, whichever side that is on whatever day. I am unclear as to whether this is partially due to me trying my best to remain ambulatory. That said, my neck and shoulders will also spasm when they are near giving out. My IVIG seems to keep me on see-saw of spasm symptoms. During IVIG I have spasms. How do you feel this relates to winic1's comment, although it has been stated there's no official MG diagnosis yet there. I am trying to sniff out all possibly angles to get rid of this pain and was wondering if that is also sounding inflammation related?

{QUOTE=AnnieB3;1270131]winic1, I did not mean to offend you in any way, nor insinuate that you did not belong here! But pain is not an essential part of MG, even though it can be a secondary symptom. I just wanted to clarify that for a "newbie."

What you have been through is horrible. The way you have been treated by "professionals" is truly inhumane. Please accept my apology if I offended you in any way.

Annie[/QUOTE]

Difficulty swallowing
 

Dear Cosmoe-
I was just diagnosed with MG. I was admitted to the hospital for plasma exchange (PLEX) when I couldn't swallow my own saliva. It felt like I could move saliva and food back into my throat but swallows were weak and required multiple attempts helped by a lot of water before finally swallowing. Ultimately, my swallowing muscles didn't respond and nothing would go down. My tongue became weak and it was difficult to move food. I was unable to purse my lips to suck on a straw or even whistle. My speech became dysarthric with an inability to pronounce certain letters or letter combinations. Also experienced ptosis--droopy eyelids. Much better after PLEX and initiation of predisone. I can speak clearly now and while eating can enjoy dinner conversation with family.