[erinhermes]

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!

[MissyGirl]

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

[erinhermes]

[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]

Originally Posted by MissyGirl

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

[MissyGirl]

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!)

[erinhermes]

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

Originally Posted by MissyGirl

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!)

[MissyGirl]

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

[Maxwell'sMom]

I'm not sure how long I had MG before I was diagnosed. I had several years of rehab from a car accident, and a couple of Back surgeries. Trying to do the rehab was horrible. I kept feeling like was was weakening rather than improving. I thought because I have bi-lateral nerve damage, it was just the nerves getting inflamed, or worse. I then started to have problems with swallowing, so I told my doctor about all the new stuff that was happening, and she was on the ball, and got me to the neuro.
I actually thought my Neuro was full of bunk, and was way off, as the only thing I could find on MG at that time was Ocular, and up until them, I hadn't had any problems with my site. Since then, many many times.
I was diagnosed through a tensilon, and was sero-neg at first, but last year tested again, and was positive. I've was diagnosed in 2004, but believe I've had a certan degree of MG for many many years before that.
It's a very complicated disease.
Best of Wishes
Lizzie

[erinhermes]

Yeah, this darm disease is very complicated and everyone seem to have different side effects to all the meds. I've been very lucky so far. My hemo told me that he'd never seen someone do so well being on steroids for as long as I have - my mestinon hasn't given me too many problems and aside from my moon face and slight weight gain, the prednisone has been FABULOUS! I am now on cellcept as well - my doc is trying to wean me off the steroids, we'll see how that goes...........I've been really lucky so far! Anything is better than where I was @ 6 months ago..........I've been able to work, eat, sleep and BREATHE - AMEN! This is a really scary disease, though. There just doesn't seem to be a lot of knowledge in the medical community regarding it, though my GP knew what it was when I came in with my list o' symptoms and called a neuro that day to set up my appt. - I still send her flowers - she is simply the best dr. ever! We are both very lucky to have such good drs, aren't we? Take care!

Erin

Originally Posted by GodDreamer2007

I'm not sure how long I had MG before I was diagnosed. I had several years of rehab from a car accident, and a couple of Back surgeries. Trying to do the rehab was horrible. I kept feeling like was was weakening rather than improving. I thought because I have bi-lateral nerve damage, it was just the nerves getting inflamed, or worse. I then started to have problems with swallowing, so I told my doctor about all the new stuff that was happening, and she was on the ball, and got me to the neuro.
I actually thought my Neuro was full of bunk, and was way off, as the only thing I could find on MG at that time was Ocular, and up until them, I hadn't had any problems with my site. Since then, many many times.
I was diagnosed through a tensilon, and was sero-neg at first, but last year tested again, and was positive. I've was diagnosed in 2004, but believe I've had a certan degree of MG for many many years before that.
It's a very complicated disease.
Best of Wishes
Lizzie

[GaBelle1]

I became ill over 10 years ago but didn't get a diagnosis until 5 years after that. I've never been in crisis enough for a respirator, thank God, but I've been hospitalized 3 or 4 times because my breathing was tanking. Luckily I've got a neuro that listens and gets me into the hospital quickly for a few days of IVIG if I need it. I'm on mestinon and Cellcept, and I get IVIG every 4 weeks. I'm still working, but I am blessed with a very supportive husband and daughter. They have taken over the house. No real eyesight problems except some blurriness in the evenings. Lots of arm and leg weakness. Definite breathing problems, my voice gets raspy easily, and choking is an occasional issue. I've learned what I can manage and what I can't pretty much.
My mom said forever that I "looked fine" and nothing was probably wrong. I hate hearing how good I look...I have gained about 40 pounds thanks to this stupid disease.
Well, that's my venting for the day...

[Maxwell'sMom]

Cheryl ,You just vent away!!!! It's been a long time since all of us old board members have posted. How is your Mom?
Erin,
How long have you been on the Prednisone. I've been on Prednisone for well over 4 years now, and haven't had a day with out them. I want to get off them more than anything, but my body is giving me some difficulty when ever we try.
Becareful in watching your Adrenal Glands, look for Diabetes, Kidney problems, and of course Blood Pressure issues, and in me it may have caused Pulmonary Hypertension. Prednisone is a great med for immediate results, but there are so many other things that it can affect. Eye pressures, Cataracts...etc. I would give anything if I could get off of it. I'm a little puffy from it, but not too bad, lol...I have more important issues with my body to deal with. Like, I want to Stay awake, I'd like to live a long happy life.
Besides dealing with Myasthenia, I am a Narcoleptic, I have dysautonomia, and now Pulmonary Hypertension, not to mention all the little junk like, Raynauds, Diabetes, thickening of the left heart, 30 percent of my lungs weakened by MG....etc... And I'm only 44.
Wow, I guess I had to vent too.

Love Lizzie
P.S. Does Lois show up anymore?