Feeling Anxious!!
 

Feeling somewhat anxious this morning.
I'm headed to the Hospital of the University of Pennsylvania this afternoon for my SFEMG. Is it crazy to want positive results? All my other tests have either been negative or within normal limits. My neuro says there are many cases that have all negative results, but not to worry because he's treated several other patients in my situation. I always feel better after I've seen him he's always so reassuring.

Also a bit nervous about starting Pyridostigmine in the next few days, (my pharmacy had to special order it)! Any relief will be greatly appreciated:)

Rachel

Not crazy at all! Wanting a diagnosis is not the same as wanting an illness. The illness is there--the label doesn't change that. What a diagnosis does is remove some of the confusion, and a whole host of other worries.

There are a lot of us here who don't have a firm diagnosis, so we know exactly how you feel. I hope things go swimmingly for you today, and that you finally get some answers.

When I had my SFEMG, I was surprised to find that unlike all the other medical tests, I got results on the spot, because it's a doctor who does the test (and not a technician, like with an MRI, etc.). I hope it's the same for you.

Abby

I agree with Abby...2 wks ago, I too was anxious & had the same mixed feelings...do I want it to prove it?or want it to be negative???....it is so difficult when all the testing is negative & you feel like "crap" to deal with the ups & downs of this disease....by the discussion going on, & the tech asking me how I'm doing on Mestinon, I surmised it is positive, (the amplitudes did look it to me, buit what do I know?, lol) but will get the "official" result next tues the 2nd.....& it was done by the Dr in concert with the technician, the latter I think, probably knows more than most Drs....sure would remove some confusion as Abby relates....we feel it, we know it deep down, but it would be nice to not be constantly questioned by the "establishment"....

Good luck today! & let us know, also how it goes with Mestinon....

Dottie

Thanks for all the encouraging words! I'm really not sure what to make of yesterday. The RNS seemed to go pretty well... some minor discomfort. Having some mixed feelings about the SFEMG...neuro tested forearm, upper arm and shoulder areas. He switched from one location to another while doing the shoulder area because he didn't like the reading he was getting. When all was said and done he said it seemed that the readings appeared "on the normal side" But didn't want to say one way or the other until he reviewd all the data. I did alot of research before the test but really didn't now what I was watching on the monitor (as far as good vs. bad).

Not sure what to think right now. If this test is negative too can it still mean MG or not? I'll have to wait and see what the results and my neuro says. I was told my neuro should have results in about a week.

The pharmacist said Mestinon would be here Monday. I can't wait!!

Thanks again!

Rachel

Rachel, see this thread for a response to your question:

http://neurotalk.psychcentral.com/sh...d.php?p=659664

Abby

Rachel, here's some more previous discussion on this board on whether you can have MG with a negative SFEMG:

http://neurotalk.psychcentral.com/thread107521.html

I totally agree with Abby. The only thing I would add is that we are left in a terrible limbo for Heaven knows how long if we dont get a positive test. Limbo is a horrible place to be. Horrible. So I your doc gives you what you need to not be in that place.

Annie59:hug:

Thank you for the encouragement and the links. Lots of information, as always!!

Rachel

I hope you get results soon. According to Dr. Howard, who does the SFEMG on a regular basis and is an expert, it takes approx. 2 hours to evalute the results!!

Don't be nervous about taking Mestinon. Take it with food, that will help. Write down any and all symptoms or side effects for the first couple of weeks. Your body may have some very normal side effects the first few times you take it like increase in salivation. That's normal, so don't be alarmed.

I take Mestinon syrup, mainly because it absorbs better and I don't have stomach acid.

Make sure you write down all the times/dose amounts, to make sure you never take it too soon.

It can help to start out slowly, like with 15 mg. or 30 mg. My neuro had me start with 15 mg. once a day and then gradually go up from there because I'm sensitive to meds. What did your doc say to do?

I hope it goes well. Remember though that it is not a drug that will cure you and if you do too much, it will negate the effects of it. You still have to be sensible and alternate activity and rest!

Annie