Hi everyone,

I'm brand new to the board and hate to have my first post be so glum, but here it goes.

In 1988 at 18 I was diagnosed with MG. In 1989 I had a thymectomy and went into almost immediate remission. In 2003 when I was pregnant with my daughter I relapsed bad, but not unbareable. My symptoms started out slow and with time in between and now I'm in full relapse ( double vision even with glasses), trouble swallowing ( lost 15 pds since Nov ), great difficulty speaking, breathing problems, etc.

For the past 3 years I've been trying to convince the doctors and insurance company that I need to redo my thymectomy because after years, the thymus begin to grow back or any fatty tissue or any tissue period left behind can cause problems in the future, like I am going through now. Even though it is considered "experimental" it seems worth a try. But because I am not on my deathbed, even though at times I truly feel like it.

I have been taking mestinon and have finally agreed to take Imuran despite the side effects. In the past I had been on IVIG for a couple of years, but it was difficult to maintain treatment because of the expense and again dealing with insurance. I have tried prednisone with devastating effects... I went into a prednisone psycosis and ended up in the hospital for 5 days.

I have replaced my primary care doctor and neuro with newer and more aggresive doctors. But right now I feel so hopeless. Without MG I am a normally a very upbeat positive person. I used to smile all the time, but because of paralysis I can't even grimace anymore. While I was pregnant my husband and I moved to a new area to buy affordable housing, but because that was around the time I started to relapse, I have not made any friends. In other words, all my friends are far away and I have no one locally. On top of that, with the economy so bad, our house is going into foreclosure.

I am no longer the wife, mother or person I used to be. I cannot sleep at night, I am sinking into a great depression. I HATE to sound like a victim, but I truy blame all of this on MG because without it and before it I could work, was active, had friends, was the best mom for my kids, etc.

Can anyone out ther please tell me how they deal with day to day living, being misunderstood by strangers because of facial paralysis, medical side effects etc.

I dont know how much longer I can hang on.

Sorry things have gotten so bad for you. MG is awful.

Do you mostly have symptoms above the neck--swallow/vision/speech issues? If so, have you ever been tested for MuSK MG? If you've not been tested, I suggest you do so, as that will influence what treatments may work best for you.

Re-doing the thymectomy doesn't sound like the best plan to me, simply because there's very little evidence that doing a thympectomy in the first place puts a whole lot of folks into remission. You were very lucky to have had it happen for you, but unless there is VERY compelling evidence of regrowth (as evidenced by MRI with contrast), I think further surgery would be pointless and just would add more trauma to a bad situation.

Hopefully with the new aggressive doctors and some new treatments, the MG will become more manageable. You need an aggressive doctor when battling insurance over IVIG. Mine have been great for me and I've had no problems getting IVIG year after year.

As far as dealing with "life" I have no real answers for you. "Growing a thick skin" and looking beyond the looks of strangers has worked pretty well for me. I look absolutely HORRIBLE when flared up, and I assume many think I'm either mentally challenged or drunk from my lack of expression/slurred speech, etc. I hate it but what can you do, especially when you have a child that needs to be out and about in the world?!

I'm sure others will be along with support and advice soon. I hope your new docs are "just the ticket" for you!

Take care,

Missy

Sounds like you need help right now! If your neuro is dragging his/her feet, then try and find a new one!

I had a crisis when I was that weak and had to be hospitalized b/c I couldn't breathe and it helped out a lot!

There has got to be some drug that will help you. I understand how scared and alone you are.....I know what it;s like to be afraid to go to sleep, for fear I may not wake up..............

Almost everyone who has MG has bouts of depression ( @ least that is what my GP told me)....I am on Paxil (10 mgs) daily, and that seems to have helped....

Have you had the plasma exchange? It sux, but is effective! I just don't understand why getting IV IG is so frickin hard! Our drs know we need it to stay happy and healthy!

It sounds like this stupid disease has really done a number on you......I hate being sick! DO NOT BLAME YOURSELF!!!! You are the victim! It is our stupid society and health care that is to blame! I have a friend in Australia who gets the same meds I get for pennies on the dollar............

Cry, scream, rant, rave, do it all! There is nothing wrong with a little break down now and then! SAdly, we have all been there!

Don't worry about what others think! You are sick! They can all go to h$$$! You do not OWE anyone an explanation! I've thought about getting a shirt that says "I've had a thymectomy, what's your excuse?", but my hubby and son nixed that idea.....

Is there some sort of governent aid you can get? Social security disability? It sounds like you need a lawyer to fight for you!

Where do you live? I know how hard it is to have your home foreclosed on. I went through the same thing years ago and it was heartbreaking but right now you need to focus on YOU and getting well.........

I had no idea that prednisone could cause psychosis.........that is scary!!!!

If you need to talk ANYTIME I am here for you! My email is erinhermes@hotmail - feel free to contact me anytime!

I have blown up since I've been on the roids' and people who haven't seen me in a while always tell me "You've gained weight" - no, really? I tell them that I have an incurable disease and the roids are the thing that keeps me alive, so I'll take being 20 lbs heavier any day of the week. People can just be so insensitive. No one really knows that much about MG anyway, they just give me a blank stare when I tell them the name of my disease.......As for the eye thing, I've noticed when I ice my eyes down they almost look normal......my neuro suggested that one!

When are that weak, try and take it easy. I know that sounds ridiculous especially with young children, but there really isnt any other choice. Can your mom/family come down and help? Can you send your kids to them if they can't come down? I feel guilty all the time b/c I am no longer the mom/wife I used to be, but there isn't much I can do about it right now and stress will only make me feel worse!!!!!!

Sorry for going on and on, but my heart just broke when I read your story.....you are so young!!!!

Please email me anytime for any reason........I don't mind venting @ all!!!!


Erin

Hi miachris2,
I' m so sorry to read about your story, MG is definitely a sly illness.
It is a good idea to try Imuran but unfortunately, it may take a while (several months) to act.
Plasmapheresis, as Erinhermes suggested, might also be an alternative, but the cost should be about the same as IVIG's (at least in France, it is…)
The problem with MG treatments is to understand their action: Mestinon is like Aspirin, it masks the symptoms but doesn't cure, IvIG and plasmapheresis have a short onset of action (days) but their effect doesn't last beyond some weeks, maybe a month, they do not attack the illness cause, so they have to be repeated regularly, that's why they are not normally part of a base treatment.
Steroids are quick in action and generally effective but side effects may be hard to cope with, immunodepressors may also be effective but they are slow to act, some require up to one (or two) years…
You wrote you had problems when you tried steroids, what was the dosage you started with, and under what conditions?
I hope your new GP and neuro will find something which will help you.
Maurice.

After reading more posts and thinking some more, I think it's the depression that is doing the most damage to me. I was in the hospital for 9 days and just got out 3 days ago. While I was in the hospital I just emotionally snapped from all the pressure of not only having a chronic disease, but the fact that it is so unknown and mysterious even to experts in the field and then you have the everyday people and other people in the health care industry that have absolutely no idea or clue as to where we MGer's are coming from and what we are going through.

I'll go more into my treatment history later. But as it stands I will be seeing my GP the beginning of January and my neuro soon after. Currently I'm on Imuran: 50mg 3xs daily, Mesinon: 60mg every 3 hours, buspar 15mg 3xs daily. But I think the most important appointment I have is to see a meg this Saturday.

We honestly don't care about losing our house, actually we are almost relieved. Our kids are healthy. Even though they live far away, we have a very loving family, etc. I believe it's just this true clinical depression that just came on is what is making everything so bad.

I just need some advice and tips to make it until I see the doctor so that I can emotionally get better so that I can deal with the MG.

Thank you all so much and PLEASE keep the love and advice coming. It's really helped so far. I only have 5 days to go until the my psych appointment.

Hi Miachris2,
I'm so sorry you feel so poorly at this time of year! I remember last year I was really low and it stinks to feel rotten when everyone else is happy. I cried everyday in December and January last year. I was really weak and was so frustrated with feeling sick and helpless all the time. I was started on Azathioprine and steroids and eventually things turned around for me. Now I just have to put up with the annoying side effects of the steriods (I agree with Erin - everyone just thinks I've "let myself go").

Anyways, so you asked for some tips - my savior is bananas. Honestly - it sounds silly, but I feel way weaker when I don't eat a couple a day. Massage helps me as well - it doesn't have to be professional either, I find any pressure seems to help my muscles feel more "alive". Good luck with everything and keep us posted.

Take care!
~Kathy

I mistakenly wrote that I was going to see a "meg" on Saturday. I'm not sure where that came from. What I meant was that I'm going to see a pschyciatrist to get on antidepressants.

What is everyone's experience with antidepressants? Which one do you think is the best and how long do they take to work?

I'm definately going to try bananas. I usually make smoothies everyday because they are easier to eat. But again, I've lost my whole sense of self, what to do and how to make all the tiny decisions one needs to make it through the day. Thanks for reminding me.

Regarding steroids, my neuro started me on 60mg and after about 1 month I just went bananas. From reading all of the post, I think maybe starting at a very low dose and working my way up in milligrams instead of down sounds way more ideal.

For Erin - I have not tried plasma exchange yet, but the good news is I just found out that I may be getting IVIG again. This time I'm going to make it a priority to stay on top of the insurance company and Dr.s offices to make sure my referals go through. I'm sooo sorry to hear you lost your home, but knowing that you had made it through the same thing (mg, losing home, etc) at the same time and can now smile is a HUGE inspiration. I also just found out after a very long battle that I qualify for social security.

For MissyGirl - Most of my problems are from the neck up. I did test positive for MuSK antibodies, but I'm not really sure what that means.

Again, thank you all so much. Your advice is really helping

Scotskat, bananas are a useful source of potassium, highly recommended when you take steroids because steroids deplete potassium from blood, which has an effect on heart functions…
Other source of potassium (besides artificial supplements) are: chocolate, mushrooms, advocats, cantaloupes, cherries, grapes, chesnuts, hazelnuts, almonds, beans, green vegetables…
Maurice.

Hey there! I cannot believe they started you @ 60 mgs! 60 mgs! I was started @ 10 mgs and it doubled while I was in the ICU.

For a while there, I was @ 80 mgs, talk about manic!!!! I was all over the place! My poor family! They took the brunt of my anger - typical......

I have found that 10 mgs of Paxil has really helped me out.....when I was in the hospital the time before last, I had to have the plasma exchange and I think I suffered a small "break"! My fear of needles is a full blown phobia and the thought of the garden hose in my neck just made me snap! I yelled @ everyone for 3 days until my nurses suggested Paxil.........my neuro does not like to give me any additional meds, but I guess he could really tell I needed it!

I think it is great that you are going to see a therapist. Having this darn disease is really hard! I know I have my good/bad days and just cry on my bad ones (and eat lots of chocolate).........I do not like regular bananas, but for me baby bananas are the trick - and lots and lots of dark chocolate!

I am down to 3 mestinon a day - from 7-8 a day before!!! I think it is fabulous!

I hope you get your IV IG soon! I bet you'll feel great after it!

Thank goodness you qualified for SS!!!! I bet that will make all the difference in the world!

Hang in there! I know how rough it can be, but you have truly found the right place for support!!!

Erin

Maybe that's why I crave chocolate all the time! LOL! That and tons of OJ and baby bananas! I guess my body is telling me what to eat!!!!

I always love hearing your input - you are so smart!!!!

Have a Merry Christmas and a happy New Year!!!!

Erin