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Negative SFEMG but still have MG?

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Old 11-09-2009, 10:52 AM   #21
sonja
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Alice, maybe I'll do that but it is 4 hours away and 4 hours back.
So to go back for other examinations is difficult. I'm not sure that he's gone give me the diagnose. I hope so. I don't know if it is possible with the insurance to. If it is only one visit, no problem but otherwise it will be difficult.
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Old 11-09-2009, 11:49 AM   #22
alice md
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Alice, maybe I'll do that but it is 4 hours away and 4 hours back.
So to go back for other examinations is difficult. I'm not sure that he's gone give me the diagnose. I hope so. I don't know if it is possible with the insurance to. If it is only one visit, no problem but otherwise it will be difficult.
I would be ready to go any distance to see a neurologist that is my real partner in this. (and actually did).

the funny thing it that my current neuro is about half an hour away, and I have no problems with the medical insurance because we belong to the same medical system.

but, I have seen and consulted neurologists all over the world.

and gradually learned more about this illness, and could judge better who is just "nice" and who can really be of potential help.

I was not ready to accept the answers- I don't know what to do, there is nothing more that can be done, or all you need is a good psychiatrist, without persuing it.

there was a point where I asked myself-is this life worth living? and my answer was-no!, so the next answer I gave myself was-then do something to change it!

alice
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Old 11-09-2009, 12:58 PM   #23
sonja
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Alice,

If I was sure that he would give me the confirmation of the diagnose I go immediately.
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Old 11-09-2009, 01:11 PM   #24
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Sonja,

Unfortuanately, there are never any guarentees in medicine (or life for that matter) - and esp. with this little gem called MG!! If it were me, and I was unhappy with my condition and of the belief that there was a probable diagnosis with another doc, I would make the effort.

Perhaps the other alternative would be to contact this doctor's office to see if he has a collegue (of same mindset) that was closer to you and covered by your insurance. Worth a try anyway.

It is sad, but while the meek may inherit the earth, they rarely get a DX for MG!!

Good luck,
Sue
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Old 11-09-2009, 01:37 PM   #25
Maxwell'sMom
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Jana, I feel for your friend. I spent almost 4 hours straight having an EMG done at the Cleveland clinic. The Tech told me that he had been having a problem with the machine all week, and every time the maintenance person came up to check it, for fixing, it'd work fine. So my tech told me he had to restart the test, and this would happen over and over again. Until 4 hours had passed with no real break. By the end, I was in tears. I've had many EMG's and I've learned that it depends on the tech who is doing them, the machine, medications one might be on, and how much of a flair one is in with their Myasthenia. So much plays into it.
The Neurologist out there told me that even if all my tests came back negative, that he still couldn't say with absolute certainty that I didn't have MG. There is always that group of people that nothing showed up on the tests, but they still have MG.
I'm thankful I didn't get any Neuros that gave me a hard time, and I'm glad that it did show up on blood work. What some people have to go through just to get some relief from Myasthenia breaks my heart. I really feel for them.
The one EMG I had ,didn't even show the Permanent Nerve damage I have bi-lateral, pain down both legs at all time. (burning) Which showed up on many other EMG's I had. So even when something is obvious, and permanent, there is that chance that the machine isn't working well, and it's not showing up.
When I have some time on Wed. I'll look all over the internet, and look through my own stuff for info about this subject, as it is very important.
This is a great topic, and so important for us, and the medical comunity to learn.
Love Lizzie
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Old 11-09-2009, 04:19 PM   #26
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I felt I needed to contribute to this thread just a little - While I was having my EMG tests done a couple of weeks ago, the technician was constantly remarking (mostly to the student observing the testing, but to me as well) about how responsive my nerves were and how that's a significant problem in general - they don't have any honest individual baselines. He was saying that in 20 years when and if my neuro response levels drop to "merely normal" they'd say that everything is fine, except that *my* normal response is much higher than the statistical average. So I could be feeling significant neuromuscular deficiency but if I'm within "normal" response would not be diagnosed with any loss. That could very well be what is happening to Sonja... her "normal" could be quite beyond statistical normal and so she's feeling the effects but cannot convince her doctor of what the problem is.

Best wishes for you and hope you get well treated...

Brian
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Old 11-09-2009, 05:46 PM   #27
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OH BRIAN!! This makes SOOOOOO much sense!!! I think that I have mentioned that Sonja played competitive tennis (I think I have this right -- language barrier and all). This might have made a difference?!?!

I mean athletes DO have lower resting heart rates, right?? So, it would make sense that other physical aspects could be different.
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Old 11-10-2009, 02:16 AM   #28
alice md
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Quote:
Originally Posted by jana View Post
OH BRIAN!! This makes SOOOOOO much sense!!! I think that I have mentioned that Sonja played competitive tennis (I think I have this right -- language barrier and all). This might have made a difference?!?!

I mean athletes DO have lower resting heart rates, right?? So, it would make sense that other physical aspects could be different.
I don't think anyone knows the answer to that.

but, almost every human trait tends to have a bell shaped curve of normal distribution, and there is almost always some overlap between the low normal to the abnormal.

for instance some people have a Hgb of 13, some of 15, and some even 11.5, and they are all normal, but the 11.5 would be more then 2 standard deviations from the average, so it would be considered abnormal, and unless you have known that person's Hgb from birth you would think they have anemia. (which technically they do, but it has no clinical significance). on the other hand a Hgb of 13. can be a sign of GI bleeding, if that person always has 15.

a person is a very complex biological system, and that is why you can't just look at one test, and base all you decissions on that.

alice
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Old 11-10-2009, 04:06 AM   #29
neutro
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Hi all seronegatives!
I just found a reference from the Oxford group which has developed a more sensitive testfor antibodies. This test allowed to find antibodies in 80 % of the seronegatives tested...
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum
Maurice.
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"Thanks for this!" says:
korbi_doc (11-10-2009)
Old 11-10-2009, 04:57 AM   #30
rach73
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Default hi Maurice

How are you?

Thanks for that, Ive just had a look at it!

Rach
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