After reading post after regarding MG and how many of you suffered for years without being diagnosed, I was wondering how long you suffered with MG b/4 being getting REALLY sick? The reason I am asking this is that I went downhill within 6 months - granted, I was tired for a year b/4 being diagnosed, but when I came back from a trip to Belize, I had a really bad fever and headache that lasted one week that NO amount of meds would get rid of. After that, it was AWFUL! My vision went almost immediately and then I could barely get out of bed. Then I couldn't swallow and breathe - it was all so quick.........Maybe that's why my neuro has been treating me so aggresively. At first I was ticked, b/c I felt like a lab rat, but maybe he's doing all of this b/c I went downhill so fast.........How many of you had symptoms for a while b/4 you had a crisis? I was sick in October of last year, and had my first "crisis" in December - that seems awfully quick, doesn't it? Like I've said b/4, I'm still new to this whole MG thing, but am worrying b/c it seems like several people went years b/4 they had a crisis and I had one so soon - I wonder now what my chances are for remission? If you read this, please respond. I am really worried about this. I know most of you are really tired and don't have a lot of energy, but a quick response would really be appreciated - really appreciated!! For those of you who went downhill really quick, what was your prognosis? Are you still undergoing IV IG treatments? Are you still on tons of meds?Have you ever truly regained your energy? THanks!

Sept 26 will mark 10 years I've been dealing with this monster. I woke up one morning and choked on Cheerios. Came out of the blue. By November I had double vision, which would come and go. I got tentative diagnosis (and I self diagnosed) MG also in November but since I'm seronegative, no neuro was willing to commit to the diagnosis. A trial of mestinon produced nothing more than an allergic reaction.

I went into denial for a few months, until some choking episodes which required a Heimlich bounced me back into reality. I know now I was technically in crisis then, as I wasn't even able to handle my saliva, but I recovered in time without going to the hospital.

Finally I got in to see my neuro of choice and within 3 minutes of speaking (slurring) to him, he said, "I concur with your diagnosis." He wanted to hospitalize me right then for PEX and IVIG but I was scared, and also still breastfeeding my young daughter. I decided to "hang tough" a bit longer.

In 2000 I finally relented and tried Prednisone, which worked impressively at only 10 or 20 mgs. I had a thymectomy in April of that year to remove my perfectly good thymus (I still greatly regret that decision) and promptly went into the worse downspin I've experienced so far. It took months of high dose pred, and IVIG and finally Cellcept to gain control. By control I mean "two steps away from crisis."

Miraculously, out of nowhere in Aprill of 2002, I suddenly lost all of the MG symptoms. It would take a LOT of overdoing for me to feel any trace of MG. I was still on pred/ivig/cc, but I was symptom free. Note that I didn't say REMISSION, because it was NOT a remission. I enjoyed this symptom free period for 2.5 years.

In 2004, it all went away again. The death of my brother and a car accident happened, quickly followed by an explosion of MG symptoms. I've battled with only mild success since then. I've gone up to 3 mos without double vision since 2004, but right now I go about 50% of my time without it. Dysphagia to some degree is always present. I found out I have MuSK MG, and those with that type tend to have most of the symptoms from the neck up, and that is me to a "t."

I am on IVIG, Cellcept and Solumedrol (I infuse with the IVIG). I have bad days and horrible days and the occasional good one. I actually sometimes hate to have a great day because, inevitably, I'm in for a long flare up within a day or so. Hormonal fluctuations cause everything to go wrong.

Do I want remission? Heck yeah! Do I think it will ever happen? No. Hoping will not bring it for me any more than the thorough treatment I've received did. Is life as I knew it over? Probably so. However, I have not done too badly. I've raised my daughter, who is now 11. I run a successful internet business from home (had to give up my career of choice.) I am able to go on really nice vacations and have hiked in Colorado, swam in the ocean, roamed the streets of NYC and gone down the tallest, fastest water slide in the world--all with MG.

Do I think MG is a "blessing"? NO NO NO and NO! I despise it. However, it's not going away so I work with it. It calls the shots for the most part and I deal---my family deals.

Hope this helps.

Missy

[COLOR="Red"]Good Lord! It seems like we're kind of in the same boat - MG hit us out of the blue. I remember choking on Coke - my nasal passages were very weak @ the time and still don't drink it - also struggling to breathe and swallow while having my MRIs - it was quite possibly the worst time in my life.

I was so scared. I had no idea what was going on, only that I was very ill.

Do you think the fact that it hit hit us so hard pretty much rules out remission? The only big difference between us is that Mestinon worked IMMEDIATELY for me. I was actually able to chew ice and swallow for the first time in days - I'm still "hooked" on ice, by the way though I do have soft palatte issues and refuse to "drink" ANYTHING - I take spoonfuls of ice and a little liquid all day long to stay hydrated.........
)
Do you have any idea why I was started on such a high dose of Prednisone? Well, my nuero started me on it after my last "crisis" and started @ 10mg the first day, doubled the 2nd and continued to to do until I was up to 60 mg. within 6 days of being in ICU - does that sound "normal" to you? I also received IV IG and blood ( I was waaaaaaaaaaay anemic)[

What is MuskMg? I don't mean to sound ignorant, but this is still all o new to me............

Erin

/COLOR]

I think almost ANYONE who gets MG will probably never see remission. I personally have met only one person in 10 years.

Your pred dose was decided by your doctor. There are different protocols as well as different competence levels of doctors, different patient reactions, etc. What your doctor did does not sound unusual.

MuSK is a specific type of MG: Muscle specific tyrosine kinase (MuSK) is a surface membrane enzyme that is essential in aggregating AChR during the development of the neuromuscular junction. Its role in mature muscle is not yet clear. Recent studies have shown that antibodies to MuSK are present in 40% to 50% of patients with generalized seronegative MG.

"Crisis," btw, doesn't mean a "bad day" or a "flare up." Crisis is an emergency or near emergency situation when the following are present: Profound weakness of oral motor or respiratory musculature making swallowing foods impossible and handling of saliva difficult or difficulty breathing. When there are profound swallow issues, it takes very little for respiratory failure to occur. Hospitalization is recommended, and intubation is often needed for respiratory support. Simply feeling very weak and having difficulty is not a crisis, but an exacerbation. Only about 7-10% of people with MG ever have a crisis requiring intubation (thank goodness!)

Trust me - it was a crisis - I was unable to breathe on 3 dif occasions for about 1 min. each and started to black out - I don't know why or how, but after that I was able to breathe a little bit through my mouth. On the last one, Mike called my dr. who made me go to the ICU immediately! Fortunately I did not require intubation -that is the worst - actually, not being able to breathe is the worst.........

Do you also have perfectly well meaning family members/friends who tell you to "get out more", "exercise" or "go to the sauna"? That absolutely drives me crazy! I know they mean well, but they really haven't taken the time to try and understand what we with MG r going through.........It's so frustrating! I know they love me, but they just don't "get it" - I don't know if they ever will......

I also have family members who swore I was "faking" in order to get attention - my sisters-in-law - and thought I'd never hear about it. I did. They don't come to my home anymore, which is a GOOD thing! The funny thing is that we always hosted all the holiday/birthday parties and I thought that things were OK until this. I was sadly mistaken. I was so ticked to hear that they were STILL gossiping about me while heading up to see me @ the ICU that I told my hubby they were not allowed - with friends/family like that, who needs enemies........... OK, I've vented enough.........

Take care!
Erin

Don't worry about all those well meaning friends. After a few years with MG, you won't have any to worry about. All of mine scattered like roaches when the light turns on after my symptoms started. I have a couple left, but none I really feel close to anymore. MG is a lonely disease. As for now, just ignore them. I actually have the opposite problem---people try to get me to take it easy. I do have one who thinks I need to get out and get a hobby, etc, but making friends is infinitely more difficult with MG.

Missy

That must stink.....if I try and take a day off work everyone gangs up on me - or try and bail from Mike's radio show (on Saturday) - hell no! My hubby was already trying to schedule a trip to (get this) Alaska of all places! I was always super active before, so my family just expects me to be the "old me" and cook, clean, and take care of all of them - it's so frustrating! My son (who is wonderful for the most - part) doesn't understand why he has to ride the bus now in the afternoons (I still take him in the morning - no matter what), and my hubby, who really has been great overall wants me to entertain all the time - in fact we have a camera crew coming in 2 days to film our house )he's a realtor), so unless I'm 1000%, I'm really not cut any slack.........that sux! I think people still expext the old me - no matter what........I feel guilty enough w/out additional pressure from themDon't get me wrong, I truly adore my family, but they drive me crazy!) My FIL keeps saying to ignore my doc and exercise more - granted I've gained weight, but b/4 I was down 2 two ensures a day b/4 I was in the hospital (I HATE ensure) and simply could not eat - not @ all - maybe that's why my iron was so low - they did that horrible bone marrow test on me - - still hurts.......Ferritin level was @ 10awful! This disease is lonely - let me know if there is anything I can do to help......

Denial is an insidious little beast. Your family seems to be in the thick of it. Might I suggest you just not talk about MG with them anymore? Your actions (or inactions) will speak louder than words and they will eventually "get it." However, you will have to prepare for some fallout and loss of "support" (I use that term loosely, as they are currently NOT supporting you), over time because many "can't" or don't want to "deal."

It will be up to you to carve out a life YOU can live with. Shame on them for pressuring you! I do feel for your son. With my dd, she has never really known me any other way, and she's also special needs (high functioning autism) so doesn't hassle me about the MG too much. Your son, however, will adapt. Currently my dh takes my dd to school, and I pick her up. I don't do mornings very well, although I was once a real morning person.

Hang in there!

Missy

That's what I thought as well - denial wise. It seems they just don't "get it" even though they are all very intelligent people, so I just can't seem to understand..........I mean, when someone I love is sick, I try to make sure they are taken care of and rest as much as possible, but my group just doesn't want me to. I guess (in their minds), they think I'm just "giving up" - -which is NOT the case.Trust me, I want my old life back - I'd do almost ANYTHING to have it back, but I need to try and focus, rest, etc, in order to feel better.

There are good days and bad days, and I'm just going to have to deal with it........

My son is also special needs - he has Aspergers - he is the light of my life! He also cracks me up b/c there is no bs with him - if he thinks it, he says it - I love that about him! He is very dry and takes everything literally - he is so much fun! I knew I was going to stay home yesterday b/c he told me I looked awful and then asked if I was sick, so I knew I wasn't doing all that well.........

Let me know how you are when you get a chance!

Erin

Interesting. You're the third mom with MG with a child with autism spectrum disorder that I've met. Of course ASD is so darned common these days...

Sixteen, huh? I dread the teen years with my dd. Already she is maturing so fast. The thought of her ever driving scares the pants off of me. She has done VERY well (I use biomedical treatments) and has always been in regular school/classes with no supports but the ASD is still there. Very, VERY challenging behaviors at home. I worry about her constantly. I understand the "literal life." We're living it, too.

Missy