Myasthenia Gravis

[jacks_daughter]

my dad is 65 and has been diagnosed since January. he has been in the hospital because of myastenia crisis 4 times this year, over 30 days total. How long before he gets any better? i mean he walks thru the house and thats it for several hours... any hopefull stories i could tell him?

[jacks_daughter]

yes! dad is getting better! his double vision is gone and he almost feels like he did before. this happened during the third round of plasma pharesis, upping the steriods, taking a med for secretions ( they use it for people with lou graric's disease) along with upping the mestonin. we finnally see a light at the end of the tunnel. i know this is just the start of a long battle... but it is hope!!

[karandi]

Hi Jacks Daughter - please have a look at the reply I have just written to "lira" Your Dad is more nearer to my age so he might find something relevant to help.
Ken Robinson (U.K.)

[liddyann]

I'm happy for your dad...and you. It's great that you are so supportive of him. He will need you alot. I don't know what I'd do without my family.

[malloy]

MY HUSBAND WAS DIAGNOSED WITH MYSATHENIA GRAVIS ABOUT THREE WEEKS AGO. HE IS 67 YEARS OLD, AND HAS ALWAYS BEEN EXTREMELY ACTIVE. HE HAD TO BE HOSPITILIZED TWICE BEFORE THE DOCTORS COULD DIAGNOSE HIS CONDITION. HE IS EXTREMELY WEAK. HE TAKE MESTINON EVERY 4 HRS(10 MG). HE HAS COMPLETELY LOST HIS APPETITE. AT THIS TIME WE ARE WAITING TO SEE A NEUROLOGIST THAT SPECIALIZES IN MG. hAVE YOU HEARD OF ANYONE COMPLETELY RECOVERING FROM THIS ILLNESS? MY HUSBAND IS ALSO SUFFERING FROM SEVERE ANXIETY.

[liddyann]

One of the side effects of mestinon is anxiety. Personally speaking, things that never use to bother me now cause me great nervousness. I believe it's the meds. I will not go anywhere I've never been before by myself. Just walking into a new place freaks me out!! Driving alone a distance panics me. I will be sweating profusely by the time I reach my destination. I never was like this before mg.

I take 120 mg of mestinon every 4 hours and have been at this dose for a couple of years. My internal clock tells me when it's been 4 hours. I also have learned to keep my life on a schedule at all times...meds, eating, sleeping, etc. If I'm not in bed by 9 pm, I suffer all the next day, it's not worth it. My friends tease me (in fun) because of my "curfew", but they truly try to understand.

[ianc]

i was diagnosed with mg three years ago and some days are better than others. I can honestly say that i am a lot better than i was back then. Has your farther had his thymus gland removed like i did because they said it was for the better that i had mine removed. Dont get me wrong there are days when i find just walking around the house enough but with the support of my family i get through the hard times so just try and keep his spirits up it will get better.

[BUSYLADY]

Hi
My 27-year-old daughter was diagnosed about 3 weeks ago. She has an 8-month-old baby. Any idea if youth is a factor in disease management? She had EMG tests today and is scheduled for a CT of her thymus next week. The doctor told her today that she was stage 2 or 3. I've never read anything about the stages. How many are there and what does it mean? I'd appreciate any help or answers. thanks.

[amm34]

Based on th MGA scale 2-3 is mod-severe (http://myasthenia.org/docs/QMGManual.pdf). Youth has some benefits, esp if you choose to have a thymectomy. Did having her baby unmask the condition? I have read that is common. I know everyone is different and the severity is different, but in my opinion, as a 24 y.o, I think youth is helpful in that otherwise my body is very strong. It can tolerate more treatments, I can still maintain some fitness and workout, albeit much less... if I had to choose, while 24 is not ideal, I still think I would rather have it now than later just b/c the body can bounce back faster. The thing to remember is that while your daughter is 2-3 now, MG is very treatable, so it's not as if she will stay there. Just the other day my doctor presented 7 new different tx options to me (after already trying 2), so there are lots of things to try and it can be individualized. If she wants to get pregnant again or is breast feeding that does limit options to prednisone, plasmapheresis and IVIG, but it's arguable that those are among the most effective, if not the most effective.

[BUSYLADY]

Thanks so much for responding! My daughter had a lot of nausea and dizziness during her pregnancy, but no one ha mentioned the birth as a "starting point". She is on Mestinon now - working up to 180 mg/day and dealing with some of the side effects. He doctor told her she absolutley MUSt stop breastfeeding now. He wants to see her in 3 weeks and start her on 5mg prednisone (depending on how she's doing.
I know this is "anonymous", but may I ask if you live in a metropolitan area? We are in rural Nevada (170 miles from Reno and neurologists) and options seem distant and overwhelming right now. Is there a premier myasthenia gravis specialist or treatment center in the western US?