Taking Suggestions to be fully worn out for SFEMG
 

OK. I want this test tomorrow ( SFEMG and repstim) to be as conclusive as possible ( I know, I know.. but if it can happen, I want to assist).
Here is the current plan.

This afternoon- Some housecleaning
This evening- go with inlaws to Kohls for daughter christmas shopping
Tonight- Hot bath before bed ( wow.. first bath I had since this started was last night- that made the muscle exhaustion accelerate)
Tomorrow am- 15 minutes pilates
Tomorrow am- small grocery run
tomorrow am- hot shower or bath
tomorrow afternoon- drive as far as i can for test, so i do not get "rest" on way there.
trying to get there a little early so I can be active and moving around in the building before the test to overcome muscles chilled outside.

Any other ideas or suggestions for ways to best prep for the tests?? I want to be as symptomatic as possible at the time.

Puppet, I wish I had some suggestions for you, but I rested a lot before my test. Until I started reading this forum, I didn't know that would make a difference in the reading. I guess I stressed over having the test for so long that it worked my muscles unknowingly. Good luck, and I wish you the best. Crazy, isn't it, wishing for something positive. lol. I hope everything works out for you. busy

YOur list sounds very good. Very! I will be interested to hear your results. I am not even strong enough to take one shower everyday. I have to shower a couple days before a visit to kids so I can dress and be on feet long enough. To be this weak and have the neuros examine me and not clinically get the disease...........good grief.

The big down fall in part of my first one was it was done in the university basement in a VERY VERY cold room. I even said nicely that I wasnt going to undress until it was necessary because of the cold in that department. I asked for a blanket too and to keep my socks on. I cant remember what month it was but if it wasnt summer I wouldnt have that advantage as week by week I get worse from the heat. Heat and activity for me. I dont know what to suggest if they do it in a very cold room.

But you are very well thought out about this test. I am hoping you get good people to do it.

I am sending you a private message as something came to mind as I read this and I dont want to get off topic here. Trying to wander less when I catch it.

Annie59

I know where you're coming from! After two inconclusive SFEMGs, I was determined to make my third one count. So I went (gasp) to the mall. Without my walker. And I baked cookies all day. Then I got to the neuro and he informed me he was only going to test my facial muscles.

But, my campaign to wear myself out was actually very helpful, because I discovered that I had been in a funk (sometimes you only realize that when it lifts) and that getting out made a big difference.

I wish you the best for tomorrow.

Abby

Wow I really feel for all you people that have to go for all these tests!!!!!
I had one blood test, and then went to see my neuro, he said I had mg just looking at me, mind you I couldn't keep my eyes open, couldn't walk on my heels or tip toes, the list goes on. I feel I had it very easy, if you know what I mean.

redtail, I am currently seronegative, so not conclusive that this is MG quite yet. Tests tomorrow will tell if it is, or if we go looking for something else ( something scarier). In my first visit, my Neuro looked at me and told me he would be surprised if this were not MG, but he was suprised when my bloodtest and then my CT came back negative....

Hope your treatment plan has you in a better place than you were when you were diagnosed....

Nan,

Your list sounds good to me!! I tried a few of the same things, but I wasn't able to drive that day so I got plenty of rest on the way to Philly.

Good luck tomorrow, hope you finally get the results you want!

Rachel

Don't forget about the Repetitive Compound Muscle Action Potentials!

Stay well hydrated. Ask for copies of the waveforms.

Good luck!

Good Luck! Let us know how it goes.

sounds like a good plan to get yourself to the ICU!

just in case I would also add running around the block a few times, and then doing some weight lifting! and have them take you in an ambulance to the clinic.

sorry, for my sarcasm, but I just find it hard to believe that in the 21st century people have to think how to make their tests (which don't have an accuracy that is even near what some of their physicians assume) "diagnostic" , in a way that might put them at risk.

the true accuracy of the SFEMG in seronegative/MuSK patients is not known.
there are some studies that suggest that the sensitivity is around 50%. (which means that the SFEMG will be no better then tossing a coin!).

I have severe generalized MG with a repeatedly completely normal SFEMG done by the best neurophisiologists, even when I was in a near-crisis state, and required respiratory support during the test.

the only "diagnostic" test I had was done by a person who did not know how to do it properly, so it was falsely positive .

but, I can understand the way you feel.

I remember that when I had a cardiorespiratory stress test, it happened to be scheduled on a relatively good day. I knew that on a day like this I would have a completely normal neurological exam, and normal everything. so, I told the pulmonologist that it may not be a good day to do this test, as I am doing so well. he said that this is good because he wants me to be able to do the test.

when he got the results of the tests, he told me he wants to repeat it, because he could not believe I was so ill, since I was working full time then. at some point (after my neurologist at that time kept on insisting that I could not have any known neurological disease) he even asked me if I was not "injecting" something before coming to see him when he got the same results again.

the same thing happened when I had "objective" respiratory tests, after every neurologist that saw me thought that I was not "putting enough efforts" when doing the effort dependent respiratory tests (one even showed me how he can "easily" get a reading of 1.5 on the vital capacity, by making it look as if he is blowing as hard as he can. I have to admit that I am constantly impressed by the artistic skills of some of the neurologists. I guess this is why they assume that their patients have similar capabilities).

in any case, I told that pulmonologist that I am doing relatively well, and then how will we be sure of the results. she reassured me that if there is a problem, it will be seen. I have to admit that I was quite skeptical about that, and when she came in the morning to discuss the results of the over-night test, I was sure she is going to tell me that I am fine and there is nothing wrong, and I am just using my respirator because it gives me psychological relief. (it's hard to believe what kind of BS I was told, and it was so far fetched that I believed it, as I couldn't imagine a physician could make up such nonsense).

I was not at all prepared for what she actually said...

she told me that I had significant fatigable weakness of my respiratory muscles, which explained all my "obscure" symptoms, and fully correlated with the "unreliable" results of my effort dependent respiratory tests.

to cut a long story short- it is your physician's responsibility to diagnose your illness correctly,and understand the limitations of his tests, not your responsibility to make them diagnostic.

just like you would not expect someone with chest pain, to run around the block so that his EKG will be diagnostic when he comes to the ER!

alice