[babsg29]

I just wanted to introduce myself. My name is Barbara. I was diagnosed with generalized (+serum)MG at 28, 8 weeks after giving birth to my second child. I also had a large tumor on my thymus gland and had it removed 2 months after my diagnosis. I haven't responded to any treatment (prednisone, mestinon, imuran, cellcept, IVIg, or plasmaphresis) I am on mestinon, imuran, prednisone (just 20 every other day......to many side effects) now. I was for the past year and half doing plasmaphresis twice a week to just keep me stable. But I had 3 Staff infections in my venus cath, a blood clot in my neck (they just switched sides) and then the big clot in my upper vena cava (large vein leading to your heart) now still on the blood thinners and no where to put a cath (cause anywhere you put one leads to the vena cava) I am worse than ever. I am now 31, just had my 3 year anniversary. They say the first 3 years are the worst, RIGHT!!!!!Last year I was also diagnosed with fibromyalgia. My RA said the trauma of the MG and all it and the meds and treatments have done to my body, pushed me right into the fibromyalgia. Lucky me. Sorry to be so pessitismic, but actually this is one of my good days. I also have servere depression, generalized anxiety disorder, anemia, b12 defficiency, chronic migraines and TMJ disorder (which I had surgery on in 1998) and haven't had a problem out of until last year. now it is in pain every day, just like the rest of my body that hardly works. And to top it off.....my husband, who has not been supportive since I got sick, decided our marriage would be better off spent at separate households. Sorry for the gripe session, I know it was suppose to be an introduction, so atleast now you know I am losing my mind....lol.....but thanks for listening....I don't get that......no one really wants you to tell them how it is, when they ask.....they'd much rather hear....."I am fine"......

Take care and thanks again,

Barbara

[bluestone]

Hello Barbara, welcome!
I imagine how are you feeling, although many of your pains are not the same as mine. You said that you are on your 3 year anniversary. I'm still on my first year, did'nt complete one year from the diagnosis of MG. Sometimes, when I think how I'm worst compared with the beginning, the fear comes and also the sadness. But lately I'm trying to think in a different way (I don't know if I'm doing this in fact.) Did your MG worse in a severe way from the first year till now?
I hope you find this a good place to share your experiences and feel that you can be heard here and there is always someone to give you a word.
Wishing you well
Bluestone

[loisba]

Welcome, Barbara! I'm in my 30+ year of MG, though mine is mild compared to what you are going through. Don't feel bad about venting, we all need a shoulder to cry on and a listening ear. Sounds like you've had more than your share of problems. Too bad your ex didn't believe in the "in sickness or in health" part of his vows! That was just one extra blow you didn't need.
Come back any time to vent, it's a very healthy to thing to do, and you know most people here will be able to totally sympathize as well as empathize. For many of us it's a been there done that situation. Though probably not quite as bad as what you've been through.

[Angie B]

Barbara,
I am so sorry to hear about the non-supportive husband. I found that mine was very confused by the disease and could not handle all of the time it takes to treat this disease.
I was also shocked to hear of all your issues, which mirror mine. I am also on anticoagultion drugs due to clots in all of my central lines. I have had so many due to the number of pheresis treatments that the only location to put a line is in the groin- which is NOT lovely. None of the protocal treatments have worked for me, although I did have a round of chemotherapy (Cytoxin) in December and that seemed to really help "reboot" the immune system. They believe I have the "musk" version of MG. I also have Factor 5, which makes me prone to clotting. I just had an appt with an oncologist/hemotologist to do a complete blood clotting work-up, hoping to find some answers to the issue- I am 39 and do not look forward to being on blood thinners for life. I am now on Lovonox ($150/wk) shots daily, the heprin makes me bleed. I feel like Im a mess.
The drepression is also something I am dealing with - I feel for you, please feel free to drop me a line on "private message". Sometimes talking to someone who has similar issues, multiple issues going on at the same time makes it easier to cope.
I will keep you in my prayers and would encourage you to see an hemtologist who can do a complete workup on you. There are some other autoimmune diseases that show up in the bone marrow.
I will also pray that your husband realizes that the illness is difficult on a DAILY basis and support is what you need right now.

Feel for you!
Angie

[cindylee]

Barbara..
First of all.....please don't ever feel like you are whining for complaining......and from reading the replies you've gotten so far, I bet you can see that most agree with me. This whole MG is an overwhelming disease.....and it seems that it either started with another disease....or is followed by another one. As if MG all by itself is not enough for someone to deal with.
I have been over a 15 year or more period been diagnosed with everything but MG.....and then last week had a gall bladder attack that felt like I was in labor. This was after I had just had EMG with a doctor who specializes in MG, who proceeded to put needles around my left eye until I thought i was going to levitate or die one. No fun.......and I felt like my plate was already full.

HOWEVER......my pain seems to melt away when I read a post like yours....when there are young children and a husband in the picture. My children are grown...and I've been divorced for 15 years.....and actually it is ok because he would never have been able to deal with a sick wife.

So....I am very sympathetic to your situation and think you will find much relief just from being in this forum. Witnessing someone elses pain somehow eliviates mine....and I hope it will be the same for you. Stress I'm sure you know by now makes all the MG stuff worse. So try to check off as much as you can on your stress list.

Please keep sharing....we are all interested in your story and your pain.

Be well...
Cindy

[redtail]

Dear Barbara,

I think this is one of the best places to vent, so you vent away.

We all here understand, and care, and I know when Im having a particularly bad day I come here and usually find some help, I think Id rather do that than always be complaining to my family, thay understand, but I hate complaining to them all the time.

So know we are all here for each other, sometimes we listen sometimes we cry, sometimes we talk.
you take care
redtail