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lilsalliann 10-22-2008 11:21 PM

erin
hi, yes i do ptosis, it started out as what i thought was bells palsey AGAIN. it turns out bells palsey doesnt happen 3 times in a row with days where you dont have it and other day s where you do. i now have my smile back most of the time. but i have ptosis in my right eye at the end of every day. and i am so weak i just want to cry.and im not a person who cries.

i am glad to hear the illness can be controlled. i just wish they would figure out whatever i have and control it soon

i do have a daughter (19) she is in college. i dont have a support group because i dont know what i have and its not always easy for me to whine toi other people even tho i feel pretty whiney these days.

i work full time but i dont think i am going to be able to continue to do that, i keep taking time off work because i really feel i just cant make it .

reading everyones post on here does give me alot of hope.!!!!!!!
there seems to be alot of strong people on here and you definiitly sound like one of them
sallyann

lilsalliann 10-23-2008 10:11 AM

hi redtail
and thank you for the welcome
my mri's were of the brain. areas of high signal were in the pons region and adjacent to the left frontal horn. and honestly i have no idea what that means either. i have been going for test frequently but my follow-up isnt until sometime mid november(cant remember the date right now). i wish it would be sooner but neuro wants all test reports before makeing any dx.
sally


Quote:

Originally Posted by redtail (Post 394593)
Hi Sally

welcome!!

Not sure what you mean by MRI showed areas of high signal, is this to do with your thymus??


When do you go for testing?? let us know, its a great place for support and to get your questions answered no matter what they are!

take care, and try not to stress too much, as this will make your MG worse, if it is MG
(easier said than done I know, I still stress about the littlest things)

redtail


Alan53 10-23-2008 10:25 AM

Hi Sallyann and welcome
I'am new to MG to and like everyone else says try not to worry and resting really helps. The worse bit is not knowing whats wrong but it looks like you should find out soon.
i'm still finding it hard to know what my limitations are ,
oh and i'm still trying not to worry but i do rest more now.
good that you got your smile back
Alan:)

erinhermes 10-23-2008 11:04 AM

Sally,

There is nothing wrong with wanting to cry! Cry your eyes out! That is perfectly normal! THis disease is scary enough without feeling guilty about being human.

When I was first diagnosed, I was an emotional wreck! I cried daily, felt sorry for myself and was afraid all the time. This too shall pass:hug:. Trust me!

You will have your good days and your bad days, but eventually it will get better! Once you get your meds, you'll feel soooooooo much better and you'll forget all of this.

Once they do your testing, you'll prolly feel a whole lot better- just having a name for what is wrong can be a great start. I, for one, truly thought I was going crazy until Dr. Ibrahim diagnosed me. In fact, when I went in for my 2nd opinion with my surgeon, he said I had the most comprehensive diagnosis of MG he;d ever seen - not fun!

Hang in there! You may need to take some time off and focus on you for a while, cuz' you need to feel better!

Does your 19 yr old live near you? Maybe she can help you out until you are stronger. The truly important thing is to not overdo it! That is what caused my crisis.:eek:

I am not srong - I just do what I have to in order to take care of my fellas! They need me and I need them!

Try and get some rest:hug:
Erin

UOTE=lilsalliann;394797]erin
hi, yes i do ptosis, it started out as what i thought was bells palsey AGAIN. it turns out bells palsey doesnt happen 3 times in a row with days where you dont have it and other day s where you do. i now have my smile back most of the time. but i have ptosis in my right eye at the end of every day. and i am so weak i just want to cry.and im not a person who cries.

i am glad to hear the illness can be controlled. i just wish they would figure out whatever i have and control it soon

i do have a daughter (19) she is in college. i dont have a support group because i dont know what i have and its not always easy for me to whine toi other people even tho i feel pretty whiney these days.

i work full time but i dont think i am going to be able to continue to do that, i keep taking time off work because i really feel i just cant make it .

reading everyones post on here does give me alot of hope.!!!!!!!
there seems to be alot of strong people on here and you definiitly sound like one of them
sallyann[/QUOTE]


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