[bny806]

Hello everyone.. I am currently in diagnositic limbo.. They have ordered the Musk test (I guess athena labs is the only place that does this test and they have to mail the kit, then it takes a week or so after that.. ugh).
Anyhow, this past week my symptoms seem to have dramatically worsened.. I have no idea why (unless hormones could play a role?)... My generalzied weakness has dramatically worsened, I have now had double vision for about 4 days almost all day (used to be only when I was wiped out). I can barely function, it's as if my arms are too heavy for my shoulders, and head too heavy for my neck too (I basically can't swing my arms when walking right now).. I can't get up from a chair or ground without serious effort (and i'm 31!)
Anyhow, the most worrisome symptom is that the last few days my chest kind of has a dull ache when taking a big breathe, as if the breathe is stopped - including when I sneeze.. I feel short of breath, and my speech is more slurred..
If this is MG, when should I seek help? When i'm awake I can tell breathing is not easy, but I am a little worried about sleeping tonight..
I called my univerisity neuromuscular clinic and they are getting me in the morning.. but I was just curious if this does sound like MG??

Also, with the double vision, I can tell my vision seems odd , but it's hard to tell if its actually double.. i think it is.. A few months back I called my eye doc saying I Had double vision and he said my eyes looked good, and I thought huh, strange.. But i realize when I have to look at something I have to kind of go back and forth with each eye to see it right..
Thanks for any insight!

[bny806]

I also meant to ask- when yall try to "push" your muscles beyond what they want to do, do they tremble afterwards or shake with weakness? every muscle in my body trembles and shakes when I try to use it, after a few times it simply burns out and wont work for a bit.... OK thanks again!

[AnnieB3]

Get yourself to the ER right now. DO NOT drive. Dial 911. If you have MG, it can go downhill VERY quickly. In the ER, they can do a neuro exam, arterial blood gas, pulmonary function tests, etc. "Yes" to your questions, which hardly matters right now. When you have generalized weakness that is getting much worse (like not being able to get out of a chair), not breathing well or not swallowing well or d. All of the above, you HAVE TO go to the ER.

No, it's not fun but you'll have to trust me on this. I know, trust a complete stranger. I've had an MG crisis and it is nothing to mess with. With MG, the worse you get, the longer it takes to recover. So just go in.

They can do a lot for you in the ER. They can't do anything for you at home! And it does NOT matter that you don't have a diagnosis. You might by the time you leave. Please, go in. I hope you'll be ok.

Annie

In the future - if you do have MG - "pushing" your muscles is not a good idea. That's how we end up in an MG crisis.

[suev]

DITTO to what Annie says...and by the way, you are not the first person here that Annie has sent to the ER.......and she has ALWAYS been right!!

[bny806]

Thank yall.. So yall think this sounds like MG?
I know yall are right.. but gosh, I sooo dont 'want to have to go to an ER.. The thing that started this all was an IUD that they perforated when they put it in.. I walked around for a week (i called my dr in the business hours) saying I think something is wrong and landed in the ER with extremely low blood counts internal bleeding and getting hospitalized for four days with blood transfusions.. So i know I wait too long..
I just keep telling myself I'll be ok, I can make it a little longer.. till the next appointment.. I have one the first thing in the morning.. and the university ER is not a place I care to be all night.. but of course I don't care to be intubated or in a state of emergency at home either.. ugh.. I just can't believe it has come to this after months of asking neuros for help.. .... and they just run one test and wait.. and then another test and wait..I have told my husband I felt like I'll be dragging a limb or not around by the time they try treatment on me. ugh.. thank yall so much! I'll update yall

[Stellatum]

Hi, I just wanted to say, if you're still here: yes, this is an emergency. You are describing a crisis, and like the others say, things can go downhill very fast and without warning. Please don't delay. ER or ambulance, immediately.

For what it's worth, yes, it sure does sound like MG to me.

Abby

[AnnieB3]

You'll have to trust these guys. It doesn't matter if you have an appt. in the morning. If you don't listen to this advice and, instead, go to the appt., be prepared with a "bag" to take with you to the hospital because if your doctors don't admit you, they aren't worth their degrees. And a neurologist does not have the capacity to do breathing tests and assess that. You need a pulmonologist. Those two specialties work together in a hospital on an MGer's case. If you don't have a pulmonologist, get one. A good one.

We can't say if it's MG or not but if it is, MG can be life threatening. You can literally stop breathing. They need to do MIP and MEP, not just a measly bedside spirometry. FULL pulmonary function tests (PFT's).

These guys know that I hate the ER, for a lot of reasons; however, it is the best place for someone in your condition.

What does an MG crisis feel like? It's different for everyone. During mine, I could still speak, because I hadn't been using those muscles. I couldn't breathe well, I couldn't open my eyes or lift my limbs by the time I got to the hospital. My MIP was -teens and my O2 saturation was in the 70's.

You have 640 skeletal muscles, any one of which can get weak. It "feels" like you can't use a muscle. Like you can't take a breath in or out, like you can't swallow or talk or open your eyelids or lift your head or get up from a chair or . . . . you get the idea. IT'S NOT NORMAL how you are feeling, whatever the cause. Good grief, do you want to plan your week or have your family plan a funeral? Sure, that's being dramatic but it's utter nonsense to sit at home and wait for this to somehow magically get better. I'm saying that with a lot of caring and experience.

Annie

Sue, I'm certainly not always right, even though I appreciate you saying that. I would rather MGer's err on the side of caution, that's all.

[cait91]

They all sound like MG. Im 20 and was just diagnosed with it. My symptoms got extremely worse right as i was going through having the flu and right after. So bad that i couldn't even lift my legs to get out of the shower, so i had to stay in there until i could get enough strength to lift my legs up with my arms to get over the tub. And with your arm problems-- i had the exact same problems, i couldn't even comb my hair without my arms giving out on me or driving i had to prop my arms on the wheel and took effort to turn the wheel. I went to get blood tests done for MG and they came back positive. I also had "double" vision but i don't know either if it was considered double vision or just trouble focusing my eyes on items. Anyways, i would agree with the other posts and seek medical attention! good luck!

-- Cait

[wallowa]

Anyone have an idea who the best MG neurologist in D.C. Metro area is? I'm on 2500 mg of Cellcept per day. I joined the MG life in 2005. I had my MG crisis in 2005.

[Tracy9]

Just wanted to let you know that I also have both small fiber neuropathy and MG. I was diagnosed with small fiber neuropathy less than a year before MG. And I JUST noticed my eyelids are starting to droop exactly the way you explained yours....so very glad to get that information. At first I thought I must be getting a really bad eyebrow wax job, then I couldn't figure out where the area went where the eye makeup goes, then I kept thinking my eyes looked funny; but because it wasn't what I'd seen pictures of I never thought MG.

My eyes are the last of the symptoms to show up, I have generalized. I didn't think this was going to happen, but it's almost like my eyebrows are touching my eyelashes now. It sucks!

I was in the hospital in July for 8 days in a crisis, though I was not vented. It sucked. I've never been so weak in my life. Looking back, the heat probably contributed plus I'd missed some IVIG. My MG is managed with IVIG and Mestinon. I get IVIG every other week for 2 days.

Careful with that IVIG rate; you are describing signs of aseptic meningitis. Hopefully it won't get worse; it is just treated with pain meds and fluids until it passes anyway. It is caused by them infusing it too fast usually.