How quickly did all of you get sick with MG?
 

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

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 them:(Don'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

Yep, 16. He is HUGE - 6'2"-6'3" and is just gorgeous! We have some problems @ home too - we call him the "pit bull" cuz' he won't let things go - ever, but other than that, it's great! He hasn't shown any interest so far in driving. I guess he prefers me taking him all over town:D. Quite frankly, I prefer driving him. He gets a little nervous @ times.......I've taken him around, but he gets behind the wheel and just starts shaking.......poor baby............

Take care!
Erin

I've got a "female pit bull"--it gets soooooo tiring. Every day is a new day, same old issues. My dd is 5' 3", leggy, beautiful and totally buff as she's a competitive swimmer---and GOOD, too. The exercise helps take the edge off of her hyperness. We've just begun the "pubertal growth spurt" and all of the hormones are beginning to flow. Not fun at all---except for her swimming which is definitely benefitting from her newfound strength.

Hang in there!

Missy

Yeah, it IS exhausting! Devon will argue simply for the sake of argument. Don't get me wrong, he's a great kid, but he sometime drives me nuts! Devon's "outlet" is the computer - WOW especially - or World of Warcraft to us laymans....He hyperfocuses on his game and I have to drag him off daily - it can be so very annoying. He has also had problems with autoimmune disorders: alopcia, exzema, shingles, etc. and wants to be tested for autoimmune problems now. My dr. is drawing up the paperwork, since not many young kids get shingles. My mom ALSO has autoimmune problems (just like Devon's) plus she has had symptoms of MG for years, but won't get it checked out - don't ask me why.....I just hope and pray that Devon is OK - I know this sounds nuts, but I would feel really guilty if he ever comes down with MG, though I know the chances are slim. It really irritates him when I try and tell him about MG, so I'm just going to leave him alone for now. It scared him when I was so sick. I was always so strong b/4 I became ill (think about a woman with OCD who repaints her whole house over the weekend and then gardens - I wonder if that contributed to my getting so ill so quickly - were you the same way b/4 u became ill? I just can't stand to stay in bed all the time, so getting out and finally being able to work has really been a blessing for me.........Gotta go for now and get my house ready for tomorrow!

Hang in there!!!!!

Erin

Have you noticed your face swelling up in the Texas heat? Mine swells to almost twice it's size on really hot days! Have you gained weight due to the steroids? Do you have really weird cravings since the steroids? Just curious...

Yes, I was very active prior to MG. Did a lot, plus worked full time until my dd was born, then 3 mornings a week after. Loved to garden, cook, throw parties, walk daily, you name it. Seems a lifetime ago now.

I don't have swelling issues, but I did when I was on higher pred doses. Try upping potassium (I used capsules).

I never have had much problem with weight gain with pred. Gained about 15 pounds at one point, but lost it easily. Right now I'm a bit underweight due to the dysphagia. I'm currently very depressed, too, which is an appetite killer for me as well.

My dd loves puter, too. Webkinz and Stardolls keep her occupied. We have to totally restrict her during the schoolweek or she's impossible.

Catcha later.

C

I stopped worrying about the weight gain when I discovered that some people with MG on the lists I would visit had gained 150 pounds or more on pred. Puts things into perspective really fast.

No joke! I guess I won't be complaining about weight gain again........Thanks for the info........I cannot imagine gaining 150 lbs, and I'm whining about 15-20 - what a joke!:D

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...

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?

Hey,
Actually, my mom is doing pretty well. The cancer has spread into her hip bones and spine, but, at this time, it's not growing at all. Still there, but chemo and radiation have it not growing. In fact, they can't even see any in her breast right now. She is still in pain - apparently bone cancer really hurts even when it's not growing. But she is doing well...she and dad did some travelling this weekend for the first time in a few years. She gets tired easily but looks really great.
Thanks for asking and continued prayers.
Cheryl

Yeah, my family was pretty much the same way. I think in some weird way they just couldn't handle it. It took a lot for me to finally be hospitalized, but then I was in the ICU for days - thankfully - I think it truly saved me life! I've also got a great neuro who gets me in IMMEDIATELY when I start to feel weak or have "wonky" eyes......I hate the PICC lines, but they are great once they are in! Plasmaphoresis was the worst for me - absolutely horrible - followed by 4 days of IV IG a couple of months ago.........don't get me wrong, I was really weak and swollen, but it worked! What were you initial signs of MG? What meda r u on? Take care and let me know how you are..........Erin:D

I've only been on Prednisone for 6 months now! It has made all the difference in the world! Granted, hairy moon face is not a good look for me - nor is the "wooky" hairy body I now have, but at least now I can work (most days) and can (again, most days) take care of my family:D What dos your body do when you try and get off of the steroids? I kknow that the pressure in my eyes has gone up 10 points since I've started on them and my doc wans to check for glaucoma, but Im just so very thankful that it has allowed me to lead a somewhat normal life:D! i'm so sorry to hear you've had so many problems - vent away whenever you feel like it! Talk to you soon!:D Erin:hug:

My thoughts and prayers are with your mom! I'm going to add her to my prayer list! Tak care!

:hug::hug:

Hi Erin
 

Wow! This is such a weird disease!
 

This is such a freaky disease! It effects EVERYONE in such different ways ; my breathing NEVER tanked until the very end, right b/4 my crisis........My main problems were extreme fatigue (very, very weak), double vision, etc, until the very end. Granted, I do have panic attacks that effect my breathing, but xanax really helps with that! I'm just sooooo very thankful that I can now swallow, eat, walk, work and take care of my family:D! Does your neuro have any idea why he reduction of steroids effect you like that? I was up to 80 mg. a few months ago, now down to 20 daily. There are days when getting off the sofa is simply not in the cards, but other days I feel I can conquer the world - such is MG:(. I am very worried about my eyes - cataracts/glaucoma are a real concern for me. I will call my doc and schedule a appt.for the next couple of days!

When you get some time, let me know how you are doing!

Take care!
Erin

This is probably going to sound really stupid, but what do you mean by eye pressure? Is this yet another side effect of these crazy steriods!?! Should I be checking my eyes somehow?? I've been planing to get an eye check up soon - I've had the same prescription lenses for about 8 years and haven't been to see an eye doctor since I was diagnosed. So when I go should I ask about pressure too? Sorry about all the questions - man, just when you think you've got this thing figured out!!

Hugs to everyone!

Steroids can induce glaucoma , see http://vision.about.com/od/eyediseases/p/Glaucoma.htm
by increasing the eye inner pressure …
Maurice.

Yes, you should get your eyes checked!
 

If I were you, I would definitely get my eyes checked......mine was just s fluke type situation, cuz' I have 20/10 vision, but need reading glasses since my eyes get so tired. That's when the doc discovered my eye pressure had gone up so many points - not a good sign. She also told me it was very common in people who take steroids for long periods of time (aren't we lucky?), so we ahould all get our eyes checked more often!:D I go in on the 8th for the full workup...........wish me luck!:D

Thanks Maurice and Erin!
I will definitely make an appointment to get my eyes checked out. I guess I've just been procrastinating! With everything else that has gone on in the past year the last think on my mind has been my vision.
Hope everyone had a great weekend. It's been beautiful here in Scotland - two sunny weekends in a row - I can hardly believe it!!
Take care,
~Kathy

Thanks for keeping my mom in your prayers. I know she'll appreciate it, and I most certainly do! :hug:
I'm on mestinon every 4 hours (120mg.), Cellcept, and IVIG every 4 weeks - in fact this Saturday. Since last month, I've had a home health nurse, and I love getting IVIG at home! So much more comfortable here at home!
I stay pretty busy so have to make sure that I make myself rest. I've definitlely gotten better at it over the last couple of years.
I've had to be on prednisone off and on but never for long periods. I wear contacts (very near-sighted.) My eyes are tired in the evenings, and then I deal with some blurry vision but that's about it. My eyelids droop more and more...that first week after IVIG, I look like I've an eyelift! It's wonderful! ;)

Curious..........
 

Gabelle,


Why are you having IV IG every 4 weeks? When I read that yesterday, I was just so curious I knew I'd have to post today and find out........Are you also on steroids? How has the Cellcept worked for you? My neuro told me that some of his patients don't take steroids but have IV IG every 3 weeks or so - is that what is going on with you? I hate needles so much that for me it simply wasn't an option, but I do love the way I feel after my IVIG treatments - I call them "liquid gold" cuz' I feel like I can climb the ighest mountain and swim the deepest sea:D........Plasmaphoresis was AWFUL! It was the most invasive thing I've ever gone through ( I preferred my bone marrow test to it)....I hope to never have that again, but will do whatever it takes t o try and stay healthy:D......My fellas need me around to take care of them, and quite frankly I love taking care of them! I stayed home from work today to try and get some rest (I've been working 6 days a week recently), so hopefully I'll take a good nap and feel ready for karaoke tonight:D.........How is your mom?

When you get some time, please let me know how you are!

Take care!
Erin

I went and saw my wonderful optometrist yesterday(if he wasn't married to a wonderful lady I think I would snap him up!!) he was the one that unofficially diagnosed me, so he will always have a soft spot in my heart.

We were talking about all my problems, meds etc, and I said we'd (us here) had been talking about pred and the pressure in eyes it causes, and he said although it can, in my case on low doses, I would be more prone to Cateracts than glucoma, oh Yay!!!!

He went on to do a huge number of tests, informed me my eyesight was near on Perfect(well I have to have one thing that works!!!!!!!) but I had VERY early stages of cateracts starting in my left eye, but not to worry because it will be years before I had to worry.

I always leave him on a high, he is so caring and concerned, and always puts your fears to rest.
redtail

ps cant believe you can get IVIG every 4 weeks, my doctor has to put in a submission so I can get it, as it is so hard to get here in Australia, its on a need basis, not first come first served, I think I need to do some blood drive campaigning!!

That's how I feel about my neuro........
 

I have a bit of a crush on my neuro as well. He is just so amazing and caring - I have a bit of hero worship going on as well;)...........He is also married - though I don't know if he's "happily" married:D, but I am, so shucks! I still remember waking up from my thymectomy to find him holding my hand - it was so sweet! When I saw him this week, I embarrassed him once again - telling him I was going to hug him - he turned so red - it was quite cute!

Last night was a blast! I sang for about 3 hours straight! I was was dancing like a fool and singing "Baby got back" by Sir Mix a Lot - my hubby was beaming! I had to see my sisters-in-law - - not fun, but I still had an absolutely wonderful time! Today I am a bit sore, but it was allllllllllll worth it!:D

I can't wait for my eye exam - my vision is 20/10, but I've been having a few problems lately (eyes getting blurry but not drooping) and I don't want IV IG unless I truly need it - hate needles! I know if I call my doc, I'll be in next week and just don't want to go through it again................:D

Let me know how you are doing when you get a chance!
Erin:D