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
Quote:
Originally Posted by ras1256
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
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