Positive single fiber emg at last

[kathylee]

Hi all,
Had major computer problems late July and lost ablility to access this board. It did not recognize me. Glad to be back. And thanks to Quiger for her help or I am not sure I ever would have gotten back.
I am just back from Mayo Clinic and finally had a positive result to the SFEMG meaning I now have concrete evidence for the diagnosis of myasthenia gravis. So now I have both sjogrens and myathenia. Altho the Mayo neuro asked to have the slides of my lip biopsy sent to her to be reviewed again. I only took the report. This is such a relief. I am so so sick. One bright lite is that it seem I am profoundly worse as a reaction to hot weather and hot water. When the weather here went down into 68-72 degrees  I had a noticeable improvement in strength. We just havent had much of that weather untill recently.

I sure missed you all.
Kathylee

[eyeamdry]

Hi Kathylee-
I'm glad you got the diagnosis you were looking for.  As you know, these are hard to come by in this health problem area.
Can you tell me what your symptoms of MG were?  Numbness, falling, etc. etc.  Thanks, Lucy

[Scottietottie]

Hi kathylee 

Good to see you!

I'm sorry you got an MG dx but I guess getting the 'label' is OK in a way - you know what you're up against! Better than the unknown. Sounds like the Mayo Clinic is a good place to go.

Take care - Scottie 

[Pooh]

Good going Kathylee.  Glad to hear you finally have a firm dx and can start treatment to feel better.  Let us know how things go and if you find any relief.

Hugs, Pooh

[lynnmarie219]

Welcome back Kathylee!

I'm glad that you found your way back here and that you now have a diagnosis....not that I want you to be sick with something else....but now you at least have a name for what it is you are dealing with and can face it head on!

Good luck with your treatment plan...what is it that they will do for your MG? Have you gotten that far yet?

[kathylee]

My symptoms are great difficulty breathing normally to the point where I could not even sing. Think about it...I would open my mouth and start to sing to the radio..a favorite of mine...and I'd sing a few words then nothing. I did not have the strength in my breathing muscles to get anything out. Now that I am at least on the 'wonder drug' mestinon I can sing a little and I dont have to sleep on 3 pillows most of the time. The othe main symptom is profound weakness in my body. I had adjusted my life inso many ways to deal as I tried to get diagnosed. No washing or drying hair using arm above head. It is just not possible. And getting out of chairs, car all require me pushing up or grabbing something and pulling. Same with stairs. When I had what was thought to be a myasthenic crisis July 3 it all got much worse which was terrifying. And it happened literally in minutes cause of a too hot shower. After that I was so weak I could not return to my parttime job or do much of anything else.
They use drugs used for cancer and arthritis trreatment to subdue the immune system as well as prednisone. But since I do so poorly with medication I am hoping for  the 'big guns' like IVIG or plasmapheresis. If I had been already diagnosed before I was hospitalized on the 3rd I would have probably gotten one of these big guns. I have to wait until all the blood work is back and possible another trip up there. I am scheduled there for more stuff including a new pulmonologist 11-28. I am scheduled to see the neuro on 12-1 but it was pure chance that I got a ride up there this time as my kids are having a hard time around this. My son in law ended up taking me and dropping me off.
My kids are both overloaded in there own lives besides the issue of me being their only living parent.

And yes I wish I did not have MG. You bet. But being this weak and having these breathing issues that have sent me tho the ER and then having them not see the usual 'obstructive' lung disease (copd, asthma) symptoms always left in a place of not being believed and sent home still struggling to breath. Now I know MG causes 'restrictive' lung problems that most hospitals arent used to treating.

good to be back
kathylee

[Katybarstool]

Hi Kathylee

It's grand to have you back. I'm sorry about the mysathenia diagnosis, but hope you will improve with the treatment. Good luck for the appointments.

Kathyx

[pudmott]

Hi Kathylee,

welcome back honey. I'm glad you found your way back to us. we missed you.

even tho its not good to have MG. im glad its given you some direction to go for treatment nd hopefullly get that singing voice back in order.

take care and keep us posted

Pud

[eyeamdry]

Kathylee-Thanks for giving us such a good explanation of your symptoms!  Lucy