Yeah, I know, I need to be careful. My kids could take the school bus, but it gives my youngest a migraine. Otherwise, because I'm so sick and never know when I can run errands I get my groceries delivered from a local store and everything else delivered from Amazon (I love that!).

The problem right now is that I don't know how long it'll be until I get a diagnosis and it's hard to live without a car. Still, I'm going to try to cut way back on driving.

Ugh, I need help! I need medical treatment!

Anyway, thanks for the good advice.

Ally

Ally,
I'm just curious about something. Do you smoke or drink coffee, eat a lot of chocolate? We had a thread going awhile back about the effects of these on the EMG tests. All these, it seems, could scew the EMG results, and I may become the living proof of that here soon. If you do any of the above, before your next EMG refrain from smoking for 24 hrs. (MUCH easier said than done), coffee and chocolate for at least 3 hrs, and don't take any Mestinon for 24 hrs. before (unless of course you start into breathing difficulties!).

Interestingly, my first EMG was negative and I had smoked on the way to the test.

When I got my formal DX, I had been in the hospital and no smoking for about 24 hrs.

My decrement was huge! in the shoulder was 76%, face 23%.

My last EMG's showed no decrement - I smoked on the way in having been told it didn't matter when they were checking the peripheral nerves. But I was so weak in the neck and upper back that I couldn't sit up or hold my head up.

I will be going in for an SFEMG soon. I'll be SURE not to smoke or drink coffee before.

I think this is another example of the patient figuring it out before the med community! When I had my first cervical discectomy the surgeon was trying to get me to use bone bank bone for the fusion instead of my own bone. I insisted that my body wouldn't know what to do with super sterile bone because I have smoked for so long. In six months I had fused as well as they generally see in one year.

Guess what! By the time I had my second fusion (4 years later), he said that "they" had discovered smokers heal better with their own bone! And he said it like that's something they figured out on their own: he had forgotten our conversations on my first fusion! UUGGHH! Doctors!

Just a quick disclaimer - I know I need to quit smoking, but I discovered the hard way that most of the quit smoking aids (Chantix, patches, etc) are no no's for MGer's so this is going to take a major psych job on myself and right now all my "psych" is going into staying somewhat functional, and maintaining with docs!

As you can see, even though I had the formal dx in 2004, we are AGAIN trying to confirm my MG before treating (new neuro due to insurance changes). I am learning that even with another docs notes, tests, etc., if a neuro doesn't see it for themselves, it doesn't exist! That puts us all in a very bad place since, as you know, our symptoms wax and wane.

It's ridiculous that we have to allow our symptoms to get so bad before a doc appt (or even push ourselves to an unsafe point before an appt), just because we know if they don't see it, we don't get help! But....that's the way it seems to be. I think once they get me going again, I'm gonna start a grass roots movement to get them to understand that they need to trust the patient a little more!!!

Good luck, Hope you get your dx soon!

Becky

Hi Becky,
You bring up some good points! I don't smoke, or drink coffee, but as for chocolate - well I'm a girl. Still, I don't eat tons like I used to. But i'll be careful to cut it out right now for the appointment I have on Tuesday.

The regular EMG that they did on me showed nothing. While I was getting the nerve stimulation test they said that some had shown borderline results and they did a few more. They girl that did it was learning on the job and they didn't concentrate on the muscles that would be involved with mg. I feel certain that if they tested the muscles above my eyebrow I would get an mg result. Probably the same with my shoulder. Mostly thought, it's my abdominal, postural, and breathing muscles that are weak and I don't think they can test for that. What I would really like is a SFEMG by someone who knows what they're doing.

May I ask you what's holding up your diagnosis this time? Have you tested positive for antibodies? What piece of the puzzle is missing that you still have to prove? I'm wondering what would constitute an air tight diagnosis so we don't have to fight, fight, fight for the rest of our lives. I don't think I'll ever have one because the strength in my limbs doesn't fall apart during the standandard exam (which doesn't make sense to me because that's often the case in mg I think - it's weakness after exertion. Is that right?)

I'm sorry you're struggling with cigarettes. I watched my mother struggle with getting off of smoking and it was terrible! I never touched a cigarette because I was literraly terrified of getting addicted to them. (But I never developed a terror of chocolate - strange!) It's funny but I feel like you'd better be in great shape when you get mg or your little problems are going to get even bigger. Your smoking problem is like my weight problem. I'm 25 pounds overweight now since I always gain when I'm sick and now I'm looking down the shotgun of steriods. Yikes!

You are so right about having to push ourselves to be heard. That's exactly what I'm preparing to do this weekend - yoga and everthing else I can think of to get my muscles weak and shaking. I'm *not* looking forward to it, it's going to be agony. And they still probably won't believe me. If they could just believe us and take our histories and believe our histories this would suddenly become very easy.

As for patients knowing - that is so true. And they know how to cover their bums well. My conversation with the Mayo doc went like this: me: sf emg is the best test, can I please have a sf emg? Doc: No it's not. Me: Yes it is. Doc: No it's not. etc, etc. My medical record reads: I spoke with the patient about getting a sf emg as that is the most appropriate test.


Ha! He must have looked it up after I left.

Also this gem: The patient may have myasthenia gravis but we won't pursue it at this point because it doesn't explain all her symptoms. Huh!!!!? You're going to ignore a devasting, potentially fatal disease because it doesn't explain every puzzle piece of symptoms?!?!? I just don't understand how the minds of these guys work. Except that they really, really don't like to be proven wrong by patients (I went in asking to be tested for mg and he told me no for a week before he finally gave in. They don't know what to do with a patient being right and them being wrong, I think).

Or the other neuro, red in the face and almost unable to speak he was so angry that I had brought articles that went against what he was telling me. And he very hotly telling me over and over that I didn't have mg. This gets translated in the records as: Of course the patient does have positive antibody test so she may have myasthenia gravis. I have told the patient that I would like her to come back for a nerve stimulation test to explore this further.

Anyway, I hope your "new diagnosis" goes well. Don't give up fighting! This is just a crazy, crazy world when it comes to getting medical care.

Ally

The worst problem I ever had with eye lid weakness was at my daughter's night softball game last year. I had to drive 20 miles home with my left hand draped above my face, using two fingers to hold my upper eyelids open while I was driving. I don't know if the ballpark lights caused me to strain my eyes or not, but it was not fun driving home. I almost hit a deer I did not even see!

Yikes! That's scary!

Hi Ally,

Who knows what the hold up is! Actually, I'm kind of a challenge because of some other influences.

As for the MG - I had a "rock solid" dx in 2004 by a neuro that is well respected for her dx abilities in her circles. Unfortunately, I have moved and my old treating neuro stopped taking my insurance, so here I go again.

I haven't had a droopy eye once at the neuro's - that's strike one!
This neuro tells me it's rare, but happens with MG.

I have generalized MG and my face/eyes/breathing are usually the last to get involved. Generalized is apparently a more rare form of MG, so not as many neuros have experience with it.

I am antibody negative for both the known antibodies. Another thing that puts me in the more "unusual" category.

I have symptoms that are definitely not MG - spasticity, hyperreflexive, progressive numbness and tingling amoung others, loss of vibration sense...

They have known since 2003 that there was a second condition, or possibly one condition that accounts for everything, but Mestinon definitely does help me, so that keeps the MG dx around.

The combination of my sx's looks just like MS, but they can't seem to get an MRI that shows the lesions, so in the past they have attributed my second set of sx's to spinal cord compression that I presumably had in 1996 when my first really serious bout happened. I question the cord compression now because there was so much argument between my neurosurgeon (didn't agree), my neuro at the time, my previous neuro at that time (he and my surgeon new each other well and discussed me apparently), and my second opinion surgeon. With the info I have now, I really wish one of them would have been smart enough to get a myelogram on me then to make sure. My MRI wasn't real conclusive due to metal in my neck from the 1st surgery causing "artifact" or obscuring the picture at that level.

Most recently, my newest neuro was able to find the severe weakness, but because I messed up and smoked AND drank coffee (I presume that's why) her EMG didn't pick up the decrements. I'm hoping my mistake will help prove out Annie's wonderful research into the effects of nicotine and caffein on EMG's for everyone in the future. If my SFEMG shows the problem, I'm going to take my 1st EMG (negative-smoked & coffee prior),
my 2nd EMG (after 24 hrs in the hospital, no smoking or coffee prior) that showed 76% decrement in one muscle group, and her EMG (again, smoked and caffein so no decrement) along with Annies research findings and plop them in my neuro's face.

She and the rest of the neuro community are of the belief that caffein and nicotine use don't affect the EMG on the peripheral nerves - I'm planning to show them otherwise with my mistake!

Back onto your experiences, though. You also had some run in with egotists it sounds like. At least yours put good notes in your file, though, even tho' they contradict how they spoke to you. I gained access to notes from my very 1st neuro to my PCP that flat out lied about what I had said about my mental state, that made me sound like an absolute raving nut!! All because I questioned his results on my 1st EMG, which I did because he seemed to be having a lot of trouble getting a baseline - kept reshocking me and telling his assistant "no, that's not what I need", then he finally told her "well, lets just go with this, I don't want to have to keep shocking her like this". Wouldn't that give you reason to question?

Anyway, it was all downhill from there with him and he put a very effective block on me after that. I had so much trouble getting anyone to even start a consultation without asking a bunch of psych questions first!
There's one letter that has been withheld from me (doesn't exist in anyone's file!!! except the 2nd opinion surgeon who said I had to get it from the source - my neuro surgeon) that caused my 2nd opinion surgeon to start my consult with a 1/2 hr. rant about how I better stop acting like this and my husband wouldn't put up with me for long, and that I was passive agressive! My husband and I sat there with our jaws dropping.

This rant was preceded with "I have here on my desk a letter from (my surgeon), and let me tell you something young lady!" After I quit responding trying to defend myself, he finally decided to do an exam and discovered a H response on me. Then he turned it around and said "these boys had better knock it off and get you taken care off". He was a much older surgeon that had actually trained my surgeon, but it was his comment "these boys" that made me realize the 1st egotist neuro was involved in that letter.

Anyway, I don't use that neuro surgeon anymore altho' he may have been right about the cause not being cord compression because I don't deal well with docs that forget their oath is to their patients not other docs!

Hope you have better luck in the future with your docs and dx. The link Annie gave us is going to be very valuable, to me at least, and I hope for you too. I put it my favs folder of ammunition .

And forgive my rant here. I just get so frustrated with some of these doctors and the main reason I do is because of the conditioning that first neuro gave me as an intro to their community!

Be careful about pushing yourself. Once a set of muscles get fatigued enough, it can turn into a domino affect that's hard to stop, and can lead to crisis.
Talk to you soon.

How are you? Are you OK? So, generalized MG is the rarer form? Leave it to us to be "special" with an already rare disease! LOL! Maybe we should buy some lottery tickets- what do you think?

I hate the fact that drs are sucha pain! If they experienced ONE day in our shoes it would shut them up! I wanted to smack a few that thought I was crazy/depressed when I was really, really sick......the whole EGO thing gets in the way of properly dx'ing people.......

Just wanted to vent!

Big hugs!
Erin

Hi Erin,

I am (cross your fingers) finally starting to feel a little better. I imagine it's cuz I'm working on getting a picture of me in the dictionary under "couch potatoe", but
!whew! it was getting really bad there. I couldn't stay upright for evern 14 minutes without practically collapsing - I know the time cuz I was trying to get my own dinner which was a Stouffer's thing that took 14 minutes in the micro. I almost made it till it was done, but not quite - that BIT!!!

Did you have a fun Easter? Hope so!

Yeah, some of those docs have it all screwed up! It's one thing to miss the dx because you just do, but to cop an attitude like some do is unforgiveable! I have to keep telling myself that I really have only had 3 like that, because they left such a bad taste in my mouth that I hate to go see docs, then I freeze up sometimes when I get there. I'm getting better about that though, thank goodness.

As for the rare/rare - such a dubious honor isn't it? Causes a whole bunch of problems with getting a dx if you don't follow the pattern - add to that my "problem" of no droopy eye, and it seems every new neuro needs to put me through the whole bunch of tests all over again before they want to treat me! GRRRR. I sure hope this one doesn't stop taking my insurance, and I don't end up having to go on some insurance she doesn't take.

Hope you're doing well. Sorry everyone for hijacking the thread for chit chat

Becky

I am so glad to hear you are feeling better!

There is NOTHING wrong with resting - obviously you NEED it! I slept all day - and I do mean all day yesterday - and it was wonderful!

I had a GREAT Easter! I was in Dallas visiting my grandparent's and we were all able to go to church, so it was great! How was your Easter?

I just don't understand why they (the docs) are giving you such a hard time! You have already been dx'ed with MG - what more do they want?

Hope you are feeling GREAT today - can;t wait to hear from you! I have missed you!!!!

Big, big hugs!
Erin

Hi Guys, I have been having problems with my eyes for about 8 years. It started out I had Strabismus, which mean my eyes were not seeing together correctly and one would sort of shoot out of alignment, then Later I got diagnosed with Nystagmus which is an eye movement. I don't feel them moving, but if other were to look at me closely they would say it looked like I was reading, or looking out the window of a train at the scenery. Now this year I am diagnosed with MG. Just think it is all related. I also have the droopy eyelid going on.