generalized MG
 

Hey all, I dont really have the hang of this site yet. How to post. reply etc. Hope this reaches you.....I was hoping some of you with generalized MG will respond. As I said in my first post, my exacerbations are getting worse and more frequent. I finally gave in to a cane, handicap parking tag for car and I used the electronic carts at walmart during my last exacerbation (things I said I would never do) last summer...but this time, I can barely get around with the cane and I dont have the energy to even think about going anywhere.....first of all theres the whole getting ready part and then Id have to take dramamine because weak neck muscles cause me to get car sick. So I guess my big outing will be the Dr on the 29 th. Now, heres my question (sorry it took so long) ....He told me last time that Im taking a pretty large dose of mestinon every 4 hrs 60 mgs and doubleing every other dose to 120...then 180 mg Timespan at night. This time, Im taking alot less but still alot. 60 and 90 during the day and no Timespan. Less makes it worse and more makes it worse. I know he is going to want me to go on 10 days of steroids but Im afraid this will just be the start of it. Ive always refused it and got by because Im afraid of the side effects. Ive had MG for 20 yrs now....Its too late for thymectomy and he said the blood cleansing is temporary. What should I do? I keep hearing the very first neurologist I saw who told me "you have MG and you have to adjust your lifestyle. Sometimes you wont be able to walk, talk, see etc.".....Those of you with Generalized, should I just accept that Im getting older and my body cant fight it as well? Is there a wheel chair in my future? Because, dont get me wrong, I know there are ALOT of worse things to have and I dont want to feel sorry for myself, but Id just like to hear the truth about my future....dont worry...I can take it....Im a possitive person and will deal with what God has in store....just would like to know what that is. Thanks Draggin'

Draggin', I'm in the same boat -- but, can't take most of the meds or treatments. You really don't sound like you are taking all that much Mesty -- I've heard of quite a few taking 180 every 3/4 hours. But, if it is making you worse, then NOT good.

I would avoid Prednisone at all costs, IF you can -- HORRIBLE side effects. IF I could tolerate it, IVIG would be my treatment of choice -- and I would opt for once a month -- that's about how long the effects last for most folks.

You might also want to ask about Ephedrine Sulphate -- see if you could take it WHEN you need to go somewhere -- it isn't something you would want to take ALL the time. It should give you temporary strength and energy. You need a prescription and a CHECK-UP prior to taking this type of med.

My exacerbations are always due to illness, stress, or exposure to chemicals/pesticides. Have you figured out what is "setting you off". Can you avoid the triggers?

Thanx Ill ask Doc about those meds.....My exacerbations seem to be when my family, not me, says Ive overdone it. Holidays, cleaning, shopping etc.

Ummmm why is it to late to remove your thymus?

I was DXed in feb 1991 but had symptoms since childhood and they removed my thymus so I am interested as to why they can't remove yours? My thymus was like fatty tissue spread throughout my chest and around my organs so they went in and "scraped" it out, can't they do that for you?

I understand you not wanting to go places, I feel the same way, it's like, OK, take a shower, rest, do make-up? No, I guess I will go natural today if I want to be able to hold the steering wheel..LOL

Most days are OK, but like today, I went to Wal*Mart because mentally I was feeling great but it took me 3 hours to do the shopping for tonights dinner, I mean thats crazy :eek: So now I am resting for 2 hours and will cook an easy meal of burgers, then lay and rest again before clean-up.

This sucks indeed but remember the good days and it helps make it through the bad {at least for me}

Ohh and the meds. before my thymectomy I was taking 120 mestinon every 3 to 4 hours. Today I take 60mg but only if my vision gets super bad because I react to the medication. No pred for me ever again, I can't take it now.

I hope you can get the medication situation taken care of and remember if you don't want to take the pred than you don't have to, it is your choice!

I found that there seems to be an ideal dose for me and it takes time to figure out what that amount is...of course it may change over time. You are the only one to know what works best.

What you said is true for me, that less or more than a certain amount will make my MG worse...and to be honest taking too much Mestinon is much much worse than not getting enough.

I usually take 30 mg of Mestinon, 3 times a day at specific times that work best for me.

I hope this helps.

Hi Draggin'
I have generalized MG since May 2007, treated with Mestinon, Pred and Cellcept, IVIG and PLEX without success until we reached 75 mg pred per day. I went down to 5 mg per day in August 2009. I had to have eye surgery for cataract on one eye but the other was done 6 years ago thus, before my MG and my father had it also...I'm also treated for glaucoma most probably due to Pred, but no moon face nor weight gain.
I'm unfortunately now in a relapse period, consequence of a pneumonia vaccine, which, should I have known, would have skipped...
I had to reincrease Pred (now at 50 mg) and started PLEX once every week.
My neuro wants me to go again to 75, as it worked last time but I'm very reluctant, but if no improvement is obtained within a couple of months, I would not have any alternative as, at 70, I don't see myself embarking for a thymectomy...
Did you ever had a CT scan for your thymus? If the results are positive, that look like a solution, but even in that case, Pred might be necessary after surgery?
Maurice.
For your Mestinon, did you try 60 mg every 3 hours?

the Ct of my thyroid 20 yrs ago was normal so Ive been told there is no guarantee that it would help

hmmm might try the 3 hr thing....ct was normal...thnx

Joan, was your thymus tissue visible on the outside of your chest? I have an area about 4"x3" that feels like a fatty pone and is right over my sternum.

Hi Draggin!
 

Hello and a big WELCOME to the best site on the web for MG!:hug: You are going to LOVE it here! I can guarantee you that! THe people are amazingly supportive and very bright. Plus we can all empathize in ways that other people are simply not able to do....

MG is called the "snowflake" disease b/c EVERYONE reacts differently to it. Granted, we all suffer from some of the symptoms, but we are all so different.

I am 35 yrs old and have been dx'ed for almost 2 yrs now. It took me almost losing my life b/4 I was dx'ed. I was so desperate that I would have done/said anything to feel better, so when I was in the ICU I chose pred. I have suffered from EVERY side effect - except psychotic behavior. I have gained @ least 70 lbs. I think I have glaucoma. It is the pits, but I am able to swallow, walk, talk, BREATHE! Would I go the same route? Amazingly, yes! I was just too sick to make it without the pred.:eek:

You may want to consult another neuro and see what he/she has to say about your illness. IT is a tricky little devil. :(

I've known people that have been dx'ed with generalized MG, had their thymus removed and have been in remission ever since. You may be in that category. Don't ever give up hope! Hope is what keeps all of us alive and happy!:D:hug:

From the little I've learned about MG it is not a progressive illness.

Hang in there and I hope you feel better really soon!

Big hugs!
Erin:hug:

Hi Erin,
Good to see you back!
If you think you have glaucoma, you should quickly be tested for it, the quickest you'll be dxed, the quickest you'll be treated and it'is no big deal: just a couple of eye drops mornings and evenings.
Damages (reduction of the sight broadness) to the optical nerves are not reversible.
Maurice.