I am diagnosed!!!!!!!!!!!
 

Woo hoo! I am so surprised. The doctor in Boston did a SFEMG on my face. On the right side, even though I told him my only symptoms were on the left side. This was a different sort of SFEMG--instead of having me tighten the muscles, he sent pulses of electricity to stimulate the nerves.

Well, I have hardly any facial symptoms, just a little pulling in my left eye. So I wasn't thrilled that he was going to test the right side of my face, when the SFEMGs on my legs and arms (where I do have symptoms!) came back only mildly abnormal. But he said the results are clear. Puh-LENT-y of jitter, evidently.

He said he has seen 800 MG patients in his career, and not one of them walks like I do. I can't find a YouTube video of anyone with my gait, either. My upper body swings from side to side as I walk. He has never seen that before. I am also sero-negative, and don't have the typical eye symptoms. Nevertheless, he found weakness in my arms and legs, and he said my eyes move in a way that he has only seen among myasthenics. So he is "very comfortable" with a clinical diagnosis of MG. And he is going to recommend Imuran for me.

Well, for a seronegative patient with such an atypical presentation, I feel like 14 months between onset and diagnosis is not so bad! And now I have some hope of a successful treatment. I am totally thrilled. I'm going to go throw a party or something.

Thanks for all your help and support here. You guys have been just terrific.

Abby

Abby, What an incredible relief, sort of. With all you have gone through, I am so "happy" for you that you found solid answers. I can only imagine how great you feel. It has a LOT to do with your tenacity and grit, you know. Give yourself a major pat on the back. Way to go to the doctor too!

:yahoo:

Annie

Make sure they do the TPMT test BEFORE you start Imuran!!

Congrats Abby! I know how hard you worked to get a diagnosis. Good job hanging in there and speaking up for yourself too...I am so happy you can get the treatment you need and deserve.

debra

Abby so happy for you. It is good to know that there are docs out there that will go the extra mile, get creative, think outside the box to get a person diagnosed.

Annie59

Abby, It seems strange to congratulate a person who can say they have MG!!
I'm so glad you have an official diagnosis. All of your hard work has finally paid off!
Wishing you all the best as you begin your new treatment!

Rachel

Congrats on the diagnosis. It is a dance worthy moment, if you have it in you... There has to be a dance with side to side sway, right??

Fantastic !! And what a relief to have found the right doctor! Congrats!

congratulations, it sucks to be congratulating someone on being ill, but you battled for a diagnosis, so well done.

Onwards and upwards

Rach

Thanks, everyone. I know there are a lot of people here who have been fighting for a diagnosis for a long time. I thought I had come to the end of the line--that my doctor was just giving up--a few months ago.

I am thinking of the forum members who are still struggling to get diagnosed, and I hope you can find a way not to lose heart.

Abby

Abby, my feelings exactly....I'd started with a huge exacerbation of symptoms in '06 when I arrived in Tn after 5 trips back & forth from NJ with truck & trailer...after multitudinous specialists & testing, neuros were uncomfortable cuz I'm seronegative...but finally in Nov. the SFEMG in memphis proved positive...a relief, but still an incapacitating disease to deal with...neuro activated nerves in left ocular region, & I don't have bulbar signs that are evident, tho lately my eyes get so tired so quickly when I read or type...my limbs are severely affected & walking any distance is my downfall.....the changes in amplitude of the action potentials were evident even to me & the tech stated that the pictures were "beautiful & classical"..

I also hope that those members will find help with a neuro who has some empathy & will fight for them....

Please everyone, have a good holiday season & hang in there...

Dottie

,

Abby,
I'm so glad to hear that you finally have some answers. And......most important, you and your docs can focus on a treatment plan! Yay! It wouldn't have happened so quickly without your persistence (tho I'm sure 14 months seems like an eternity).

Cate

So how exactly do you walk? I have a weird walk also and have been trying to find a 'gait' that MG's have. Mine, obviously, is when I've been walking and I'm fatigued (which doesn't always take a long time.) My husband did video me walking a couple times but I don't know how to describe it.
I will say that the one time I was shocked, was when we had been to his homecoming game out of town, then we went to some lake thing where there was a trail. We were walking and I was SO fatigued and walking VERY slow. People were passing us while on their leisurely stroll. lol. Well, my family was good naturedly teasing me about how slow I was so I tried to speed it up. It felt like I was basically speed walking. It was SO hard, and I looked like I was mimicking someone with a disability! (or rather, my family kept asking if I was 'doing that on purpose')
So when I looked at the video later I was TOTALLY SHOCKED to see that in fact, what felt like speed walking to ME was in fact almost what others would call a normal pace!!!! I could NOT believe it.
As far as what it LOOKS like.... I'm not sure that from the back it looks abnormal? Maybe I'll upload it and let you guys see it. lol I get kind of a 'foot drop' almost, when I'm tired, and I have to lift my foot and leg in order to not trip myself. I guess I"d say that I wobble from side to side maybe? '
UGH.

It's pretty hard to describe. Unless I'm really weak, my legs move normally (when I'm really weak, they just don't hold me up and I collapse). It's my upper-body that isn't normal. When I take a step forward with my right foot, from the waist up I tilt to the right. Then with the left foot, I tilt to the left. Sometimes I sort of lean backwards and arch my back as I walk, but that's on purpose because it stops the swaying. I can also compensate by throwing my hip out to the right as I take a step with my right foot, and so on, only the last time I tried that I got a rude comment from a guy in a pick-up truck. I decided I'd rather look "handicapped" than, well, you know. Less chance for misunderstanding.

When I'm walking with family and friends, they tend to grab my arm, because I look like I'm about to fall over. But I never do, though I sometimes crash into walls. When the swaying is extreme, it sends me off balance if I'm not careful. I stumble not because my legs aren't working well, but because the swaying of my upper body throws me off balance.

From what I've heard, many of us "wobble" and feel off balance. When I first started having symptoms a year ago, my doctor thought I had an inner ear virus. I've heard people here mention crashing into walls. I think many of us have weak side muscles, and the only unusual thing about me is that it's my most severe symptom.

Oh, about what you said, that it almost looks to people like you're doing it on purpose: I have heard that from my family, too! (Not that they think I am--but that they would think that if they didn't know any better). I think it's because all my weird movements are sort of slow. When I collapse, I don't just fall to the floor--I go down slowly. I haven't totally lost muscle control--the muscles are just weak and slowly give way. They don't just shut down completely all at once. They sort of gradually give up. Maybe that's it.

By the way, I find my rollator extremely helpful. It steadies my upper body and gives me a seat so I can rest and save my energy. For example, when you go to a department store, you spend some time standing--looking at the merchandise, waiting in line, etc. The rollator gives you a chance to sit. It makes a huge difference for me. This is the one I have:
http://www.amazon.com/Medline-Deluxe...1639565&sr=8-1

Abby

Hooray for the diagnosis!

Congratulations. I was so thrilled when my neuro told me I could have kissed him. To be that happy over a health issue does sound crazy doesn't it, but I thought I was facing ALS. I had already convinced myself and the doctor did not say absolutely not when I asked. He was happy too. Now you know what you are fighting. What time is the party. busybusy

Right, that's exactly it. I'm not thrilled to be sick, but I was already sick. Actually, before the diagnosis I was figuring that I would just be like this--or worse--for the rest of my life. Now it occurs to me there's a chance I'll get better. I have felt much better mentally since the diagnosis, though I know I will hit other big bumps in the road...I even know that diagnoses can be taken away. And with MG you never know what's ahead.

The other thing is that a diagnosis banishes the fearful specter of not being believed. And though none of my doctors has suggested such a thing, in the back of my mind I've always been afraid I'd be told it was all in my head, or that my problem was psychological, or that I was exaggerating. I think everyone here understands that fear, and I know some of you have had to face it. It's my worst nightmare. I also think the people who see me regularly, like my neighbors, must really wonder what's up, because sometimes I'm normal, and sometimes I can hardly stand.

I had my son drive me to the convenience store and we got the makings of rootbeer floats to celebrate. You know I'm worn out when having my son, who has a learner's permit, drive is easier than driving myself. Ho boy.

Abby

Sounds like a good way to celebrate. I can just taste that float.

Yes you are right that there is so much unknown and indecision and back and forth from the docs. That time I went in to the first neuro and was having the myasthenic crisis (her words) she also tho put in the notes that she was not sure if I was exaggerating the tremor she she saw. Good grief. Its that kind of thing a bad doc will latch on to and use rather than the other things she said that validated being admitted that day.

Docs too often pick what they want and leave the other stuff. Like now my great pulmo wrote in his notes from Nov 2nd that he feels I need a double blind tensilon test. The double blind part is to be sure it proves to the doubters for once and all that I do respond as well as I do to mestinon type drugs. They keep discounting this and calling it subjective. But did the neuro I saw 2 weeks later do it? No. And me....I can be way too optomistic about people at the worst times. I told that doc things I have not told another docs there that I knew could be used to make a weaker case. But in my defense there was 3 docs including 2 students and I dont do well in little exam rooms with multiple docs.

What I said was when the head doc asked if I had seen another neuro early on I said yes. I did say he was semi retired which really didnt make the point that it was not a normal neuro exam as it was at a center that was at the time helping people with Firbromyalgia or Chronic Fatigue. It was a cursory exam, minimal and he was trying to do a nice thing for the nurse that ran the place and had one of these disorders. My brain fog gets me into unclear places in doc appointments these days worse than ever putting in places around remarks I cant even realize the ramifications of till later when I am thinking more clearly. I am not sure how to fix that.

Annie59