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Hello everyone,
I am a 28 year old woman in Texas still awaiting an official MG diagnosis despite some pretty debilitating symptoms. For the past five months I have been experiencing fatigue and generalized muscle weakness, primarily in my arms and legs with occasional swallowing issues. My PCP thought it sounded like myasthenia gravis or LEMS, and sent me to a neurologist. The neuro said that I clearly had fatigable muscles in my arms and legs during muscle strength tests which pointed to MG. He sent me off to get my antibodies checked, but both AchR and MuSK came back negative.
During the past week my breathing started to feel a little weird and heavy, like it was taking more work for my muscles to operate my lungs. I didn't think much of it (dumb mistake #1) and ignored it as it got progressively worse over the week. On Saturday I woke up feeling great! I cleaned up the house and took the dogs to the park and even ran around with them (dumb mistake #2). By Saturday evening I was in rough shape and couldn't get out more than a couple of words at a time because my breathing had gotten so weak.
I had my husband take me to the ER and I was admitted that night. Luckily I was breathing well enough by then that I didn't need ventilation or bipap. The hospital neurologist agreed that this seemed like a pretty classic case of generalized MG. After a chest CT, brain MRI, and a few rounds of steroids, I was released late Monday. Today was my first full day back at home and breathing is still a bit of a challenge. I'm not sure how much the steroids really helped.
The neurologist I saw at the hospital encouraged me to see my normal neuro ASAP to get started on MG treatment, regardless of the fact that I haven't been officially diagnosed. I know everyone's case is so different, but have people with generalized MG (no/minimal eye involvement) and/or double-seronegative folks had success with Mestinon? Or was another treatment more effective for you? I'd like to go into my next appointment as knowledgeable as possible about treatment options.
I'm also scheduled for an EMG tomorrow-we'll see how that goes! All I really want at this point is an answer. I will update as soon as I know anything new. Thank you for reading and I would appreciate any thoughts or advice anyone may have.
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Hi, Psychitect. Welcome to the forum! Should we call you by any other name?
I snatched your post from the other thread because it might get lost in there!
Where were the AChR antibody tests sent? Mayo?
Some MG patients are seronegative, meaning that no antibody is showing up yet OR there is an antibody that hasn't been discovered yet that they can test for. If you have a low IgG level, the antibodies could be falsely negative.
Since your clinical exam was classic MG, you had significant breathing issues, and were admitted to a hospital due to that, you need to see a neuro right away!! Call their office first thing in the morning and then tell them that you were just in the hospital and the ER doctor SAID that you needed to get in right away. They'll fit you into their schedule!
I'm sorry you are doing so poorly. The good news is that there are treatments for MG. Mestinon is usually what they try first. It's a helper drug and does not address the underlying issue of antibodies attacking the neuromuscular junction.
How did you react to the steroids? Are you still on them? If so, what dose? Did you get IV Solu-Medrol in the hospital?
Steroids can make MG worse before it gets better. They are also very difficult to get off of, so, if you're still on them, I hope they gave you a taper schedule.
You need to take it as easy as you possibly can right now or you could end up in a full blown myasthenic crisis. If you can't breathe well, swallow, or are generally weak, you need to dial 911. It's hard to tell how quickly you will go into a crisis or how severe it will get. Not saying that to scare you, but to make you prepared for a "what if."
Since you live in Texas, the heat will be a big problem for you! You need to stay out of it, because heat makes MG exponentially worse. If you get overheated, cool down right away, especially your core/trunk muscles. You might want to take a thermos with you with cold packs in it if you go out. In the past, I have literally put them under my shirt, on my skin, to cool off! It's common to have an MG crisis in the summer (or in the fall in southern states!).
Do you have ptosis (drooping eyelids) or double vision? It doesn't matter if there is "minimal" involvement of ocular muscles, MG is MG. It can affect some muscles more than others and it can vary through the years! It's a very unpredictable disease.
A neuro-ophthalmologist can assess your eyes and determine if you have fatigable ptosis and double vision.
When you are feeling better, you really need full pulmonary function tests, plus MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure) tests done. Those are neuromuscular specific tests that show how you are doing at inhaling and expelling air. Plus, a pulmonologist can do an arterial blood gas if necessary, an overnight oximetry (O2 can drop significantly while sleeping), and any other tests they feel are needed.
It's really essential to have a pulmonologist. When my breathing is worse, I can get breathing tests without having to see my doctor! We set it up that way. It is possible to fend off a crisis that way. A neurologist is not qualified to assess breathing issues, even if they sort of know about it!
I don't think there is any MGer who hasn't made a mistake by underestimating MG!
It can be a tricky disease and it might take some time to figure out how far you can push it (without it pushing back!).
www.myasthenia.org
www.mdausa.org
There are some drugs MGers can't take (listed on the first site).
The important thing right now is to get some help. Call the neuro's office and get yourself in to see him. If you can, get someone else to drive you there and back. You aren't doing well right now and need to seriously pamper yourself.
What else can we help with? People here are great and have a lot of info and support to offer.
Annie