Desparate...Looking for ANY kind of help
 

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

Good lord!
 

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.....:D

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!!!!


:hug:Erin:hug:

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.

Thank you
 

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

Thank you
 

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 :winky:

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.

Hello again!
 

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!!!! :DI 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):D.........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!!!

:hug:Erin:hug:

Hey Maurice!
 

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

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

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

:hug:Erin:hug:

Hey Kathy!
 

Don't you just want to smack peole when they ask "What happened to you" or "You used to be so thin"? I really want to whop them! I know that sounds awful, but give me a break! I would never walk up to ANYONE and say that!

My gram had her heart transplant way back in 87 and she was on MASSIVE steroids - poor thing! She was TINY - you know the whole 18 in waist thing - and the first time I saw her after that I was shocked! I mean she was beautiful, but her little face was so round and full! It just made me so sad! She eventually went back to normal, but people would stare @ her too and it just made me flip out! THese people had no idea what she'd been through, yet they'd stare @ her like she was blind or something - - - -maybe I WILL get that shirt! Rude - maybe - important - definitely!!!!:D

Do you think that would be too tacky?

How are you doing?

:hug:Erin:hug:

You and your t-shirts... you crack me up! I was started at 60mgs too. I'm stuck now at 40 mg every second day and my new neuro says he doesn't want me to try to reduce any further for the next 3 months at least. He was a bit upset that I'm still symptomatic even on all my medications, but I've never been asymptomatic since my diagnosis! Things are good though - still enjoying my job and busy getting ready for the holidays. I still haven't finished my Christmas cards and they were supposed to be mailed two weeks ago! Ah well - they'll get there for the new year.

Hope everyone is keeping well! Take care of yourselves at this busy and potentially stressful time.
~Kathy

60 flippin mgs? What on earth?
 

I wonder if that is the norm.....my neuro started me @ 10 mgs cuz' he said that I was too weak to take any more @ that time, however it was doubled when I was in the ICU - that way they could monitor me....Apparently mestinon and Prednisone can have some pretty awful affects when they are mixed!!!


Yeah, I enjoy my t-shirts!

How do you feel @ 40 mgs every other day? I'd love to be able to go to every other day - sadly, it's not to be for a while!!!

What are your symptoms? You've never had a period of remission? How do you handle that? Your family?

Happy holidays!:D

ERin

Things are getting better and better
 

The nurse just left my home to start getting everything set up for IVIG. 5 days in a row, then 1 day a week. My doctor gave me an emergency script for ativan, I know to be very careful with it, but at least it is making life bareable until I can get on an antidepressant.

I had a little extra money left over and had a woman come over to help clean and she did an amazing job! God lover her!

The clouds are very slowly starting to drift away.

Thank you all so much. I was very reluctant for many years to join any kind of a health chat board. Almost all of them have people that just kind of complain and like to comiserate, which makes me feel worse actually. I'm so very glad I was picky and waited to join this one. You guys are great - I'm here to stay!

Awesome!
 

What great news!!!!!!!:D See, it's going to be alright!!!!!

There will be times when having MG can be a bit unbearable, and that's when you can rely on everyone here! They really are the best!!!!!

I bet your IV IG will make all the difference! It may take a few days to take effect, but you'll feel like climbing Mt. Everest when it's done!!!!

I am so happy the lady cleaned your house too! I know I cannot focus when my home is a mess! I have a touch of OCD and it really puts me in a foul mood when my house is chaos!!!!!

I am so happy you were approved for the IV IG - they put the port in you? I'm thinking about going that route......tell me how it all worked out for you!!!

Happy Holidays!!!!
:hug:Erin:hug:

They started me too at 10 mg/d of Pred, then after 5 days, period during which the situation got worse (but no ICU…), they increased + 5 mg every two days and I went home after about 20 days at 45 mg/d. Later Pred was increased to 75 mg (1 mg per kg of weight) and the taper was started several months ago, I' m now at 17 mg/d, January 1st at 15 til my next apointment on Jan 22nd.
Maurice.

Did it make you weaker?
 

Hey Maurice~

Did the roids make you weaker? My neuro had me on mestinon, but wouldn't put me on the roids until I was safely in the hospital, cuz' he told me that they would make me weaker (at that point I was in denial and told him I could stand to be weaker - he disagreed):D

Then when I was in the hospital, he increased my roids by 10 mgs daily (I had to take the liquid Prednisone - it was the worst thing I have ever tasted - I cried when I choked it down)............until I was up to 80 mgs - boy did I blow up!!!! It was wild!!!!

Your family is coming up for the holidays, right? That will be a blast!!!!!!
We are going to have a quiet xmas this year - only a few friends and family members, so no stress!!!!:D Amen!!!!

Have a great time with your family!!!!!!

Is it snowing there? I keep hoping for a white xmas!!!

:hug:Erin:hug:

Erin: I was in hospital when they started my pred - they wanted to make sure I didn't crash at all, but I was fine. I didn't get any better though - it took a good few weeks before I built back up my strength. I feel ok at 40mg, not great though - it's such a fine balance. And I can definitely feel a difference between my steriod days and non-steriod days. My old neurologist said she wanted the alternate day therapy so I would keep my thyroid active in the meantime.

You asked about my symptoms - I still have minor ptosis when I get tired or read a lot and some double vision. My biggest problem is arm and leg weakness - I still have to be very careful on stairs they seem to realy fatigue my muscles and given that I'm carrying around all this extra weight doesn't make things any easier! I'm okay as long as I take my Mestinon every 3 hours - like clockwork!!! It's a NEED, not an option. I have some days when I feel a bit better than others, but usually I'm counting down the minutes until my next dose! I've fallen down too many flights of stairs to want that to happen again. Because of my weakness I've "lost" one of the muscles in my legs (just above the ankle, below the shin on the front of my leg). I also suspect a similar problem with a muscle around my knees because that seems to be the weakest area of my legs. It just means I have to be careful when stepping.

In terms of how my family feels... I don't really know! My husband is just very supportive and helps when he can. I still suspect that he thinks some of it is "all in my head" but he's also seen enough to know that there is something not quite right. It's just the variability that confuses him. I think my Mom is scared, especially being so far away from one another. She only sees me a couple of times a year so she worries a lot! My Dad just expects me to get on with things and that is pretty well what I do! My MG might slow me down a bit sometimes, but it's not going to stop me! And my mother-in-law just wants me to have babies (sadly not going to happen while I'm on the azathioprine) so she doesn't quite get it either! My workmates know I have some weird condition but I don't like to talk about it too much so I don't sound whiney.

How are you feeling? Ready for the holidays?

Miachris: I'm jealous of your cleaner. Lately I've felt well enough to clean, but can't get motivated! I try to stay on top of everything, but everytime i turn around i find something else that's messy!! My husband thinks I'm a bit crazy with cleaning too - maybe not OCD but not far off! He just never seems to notice any mess... typical late-20s male I suppose (poor guy - he's getting a rough deal in this post... he really is fantastic).

And see! By this massive post I am again procrastinating from cleaning!! Ah well, here I go. Take care everyone!!
~Kathy

Okay, just one more quick note (I'm sorry, I can't believe how long that last post was!).

Maurice, What increments of pred do you get? I can only get 25 and 5 mg tablets so I wouldn't be able to reduce by such small amounts.

Talk to you soon!

Erin,
Yes, the first 5 or 6 days after they put me under steroids at the hospital were rather difficult: generalized increased weakness,extreme difficulties for chewing and swallowing, my myasthenic score (see my previous post on the subject) went down from 40 to 30…Ten seconds for my extended arms or for the legs test were the maximum! But I never experienced breathing problems (maybe due to my previous rather frequent swimming practice?) The pred increase was also more cautious (+5 mg every 2 days…).
We had a lot of snow 3 days ago and they forecast a very cold period between Xmas and New Year Eve…the canadians won't be disoriented! We have about completed our shopping, the menu is almost decided, we will be 14 persons , including the grand children, the last time we were all together goes back to the summer of 2003, but as we have lived 5 years in central africa and two years in US,(besides France and Belgium) we can't complain about our children's way of living and moving around, we probably pass them the virus…!
We count the days, they arrive on December 25 and the big party is on December 27.
Scotskat,
I have here steroids by 20, 5 and 1 mg, the first two pills may be broken in two parts, so the dosage may be finely adjusted.
Merry Xmas and my best wishes for 2009 to all of tou,
Maurice.

Hi Miacchris2,

welcome to the board, sorry its a bit belated, I've been off line for a while.

How are things going now?? Sounds like you've had a hard time of it lately. Its great you were able to get someone in to help you clean. A clean house certainly makes me feel better. My poor house is suffering at the moment, as I don't have any extra energy to clean, still it doesn't complain. I think I'll have to put in an extra effort today to clean it before my visitors arrive for christmas.

I hope the IVIG helps pick you up
take care
redtail

A little off topic, but had to comment to Erin's post on the 15th about "You used to be so thin"?

I too have had my battles with prednisone and weight. 5'2".....well over 200 pounds. Couldn't buy reams of materials big enough to cover my fatness........enough said.

So when I got soooo sick and went through Chemo again and then subsequently a year later I couldn't swallow and I lost a bunch of weight, and all my muscle mass (couldn't even hold a full cup).

Anyway, somebody who knew me when I was larger made a comment to me. "Oh, look at how much weight you lost. I wish I could lose weight like that - how did you do it?"

"I have cancer, got sick and couldn't swallow anything without it coming out my nose."

That pretty well ended that conversation.

Lydia

so how does one fight the blues?? WEll first, can you get outside at all?? Sit on the patio in the sunlight?? This time of year the lack of direct sunlight can add to depression. Many people use special lights to combat this.
Movies, go one of two ways, comedy or tear jerker. LOL Yes sounds odd, but if you need a good cry at least you have a "reason" If not get the funniest movie you can think of. (not sure where you are from, but there is one called redneck comedy tour with jeff foxworthy et al, laugh till ya hurt)
Surround yourself with positive people. some people are just ignorant beyond beleif. I too have a ton of pred wt gain. and I walk like a drunk. And I look stoned with low set eyes and the odd grimmace. but it is just me. I can't do a whole lot to change it all. But as others have said, ya gotta toughen up buttercup. LOL.
I will share a second. One of my pet peeves has always been overwt people. I could see no reason for it. Food in mouth disease is the leading cause of obesity in this country. I worked out two hours 6 days a week. Ate when I remembered to, was go go go. Metabolism never slowed down long enough to add wt to the bod. Then came prednisone. I fought it and fought it. I ate right, couldn't really "exercise" anymore and certainly not like I used to that is for certain. And little by little over the last years at 60mg a day I have packed it on. I disgust myself, but then I have to say hey, suck it up buttercup. Get your head outta your butt and live. MG doesn't define who we are. It should NOT ever do that. We are who we are and the MG is just a side not to an otherwise sterling life.
No I am not some polyanna smiling fool. I just know that if I am having a bad day, I allow it for ONE day. I can use that day to wallow in self pity, wring my hands and just be a brat about it all. Day two, get over it buttercup!! And jerk myself up by the bootstraps. We need that time to let it all go and just be. That really helps the psyche adjust and have time to assimilate the new developements.
Don't fight against it all!! You have to let it out. But don't make it your life. Like I said, say OK you, this is the time I am allowing self pity and big pity party. When the time is done, you gotta get on with it.
Find something to do with yourself. Handi-work. games. puzzle building. Volunteering to help someone else.
Are you sprititual? Do you have a relationship with God?? If so, talk to Him. He is there. He is always ready to cradle your heart and give comfort. You don't have to have some sort of fancy prayers either. Just let your heart flow out to Him. He already knows it, but to be able to just say it out loud, oh what a releif.
Also, is there anyone you can feel safe talking to?? OF course we are all here. We are always around. and it really helps to talk with others sometimes who just know and understand without some long drawn out explanation to give just because you are not able to do what everyone expects of you that day.
Got a pet? A creature who will love you just because you are you?? that can help immensly. Unconditional love. But get one that is easy to take care of.
Now is not the time to get a high maint puppy. How about a nice 3 year old dog/cat?? One who is past the wild and crazy days and is now just into long snuggles. Studies have shown that petting a dog will lower the blood pressure.
meditation, also a wonderful thing. You clear your mind totally and only allow in the thoughts you want. Totally zone out. You will be so refreshed after that. Then get positive thoughts going and move forward.
Like music?? I adore LOUD music. and if you can move to it that is all the better. Find some tunes, jack em up and dance around with abandon.
The main thing I guess I am trying to say is get the heck outta your own head for a while. It can be a very lonely scary place if you are feeling down and out.

well prob much longer than necessary, time for me to sign off and get to bed!!
hugs

Need help with your Mortgage?
 

Hi!

My daughter has MG, so I can relate.

I can give you free advise. I used to work several years ago in the Loss Mitigation Dept. of a Loan Servicing Company that helps people avoid foreclosure.

Thanks.

Rohm.

At fisrt
 

Hi, My name is Barbara.....I was diagnosed almost 5 yrs ago at 27 just after having my second daughter.......I was is shock.....I had a thyoma so large they had to crack amy chest open.......so I had to go live my ex inlaws because I couldn't lift the baby (who was born with the sympoms and was a Vanderbilt for a month getting feeding tube )------anyway-----I felt and still do......like I died and was left with the shell of a body.....no one understood, they still don't.....My deppression is so bad that most of the time I think why coudln'd I just got cancer adn died.....something someone knew about.......I still am not coping with what is going on......I have no support or understanding. My doctors have tried to expain it to my family but.....who can understand that someone can be fine one minute and have to go to bed the nextl.
Sorry I got off on myself, but just wanted you to know tht you aren't alone.

Hi mgmom

welcome to the board:hug:

I'm glad you've found this friendly board to come to!! I've just realised, I've had mg for 6 years and 2 weeks, well official diagnosis!:eek:

I know exactly what you mean about the cancer:hug:

Keep comming here for support and understanding, as we all help each other out, if you are having a bad day someone gives you support and vice versa.

Take care of yourself, and know you are not alone:hug:
redtail

Hi Barbara!
 

I am so sorry you are having to go through this.......I am newly diagnosed (well, 10 months ago) and still have dark times, but Paxil has been a great help for me........It sounds like you have no support system........your family needs a jolt of reality.....No one wants to have MG.....none of us like being heavily medicated in order to survive, but we do what we have to in order to LIVE!!!!!!!

I am 34 with a 16 yr old son and hubby that is the best - most of the time......he still doesn't get the whole "feeling great one minute and crashinbg the next" but he is trying to.......cuz' I told him if he couldn't deal with it I'd leave him.........Sounds drastic, I know, but most of my family calls this my "lazy bone" disease - lazy bone? It danr near killed me - spent a lot of time in the ICU for a crisis.........My little sis and I were always very close until my diagnosis, now she gets mad when I have to work from home or can't watch my niece.........Family, can't live with them - can't live without them..........Do you have an MG support group where you live? I have one here in SA and it has really helped! I brought my hubby with me so he could hear others talk about this disease........MY FIL has been the best - truly. He always visits me @ the hosp and just sits there - no feigned or forced conversation........AS for the rest of them, they'll just have to suck it up and deal with it. I don;t have the time or the energy to have negative people around me anymore.........

You may want to ask your doc about some meds to deal with your depression...........It has really helped me out a lot!!!!!

Hang in there!!!! If you need to talk anytime, I'm here for you!

:hug:Erin Hermes:hug: