I've just been discharged from the ICU again. Had 4 plasma pheresis treatments while there. My body took those treatments pretty bad. Chills, fever and horrible pain. During the 4th treatment the pain was so bad they had to stop. They discovered that I had a blood blot and stopped the treatment. So now I've tried Mestinon, IVIG and Plasma Phersis. When the doctors discharged me they said they didn't think they had anything else to offer me other than the steroids I'm taking. I'm weak and shakey and having a lot of trouble breathing. I don't know where to turn or if I should give up. I'm will to try Mestinon again but how do you all handle the gastro-intestinal issues that go with it? I would be grateful for any feedback. I'm scared.

Martha

Martha
Immodium helps, but it is a problem, but better than being in the hospital with crisis . So sorry to hear you are resistant to the meds. I have a tough time with IVIG, & have to prep with IV pred. first.
I hope you can find something to help soon.
Mary

Oh, sweetheart, I am so sorry! Those plasma exchanges are REALLY hard on the body. Are they considering IV IG for the future?

How did they handle the blood clot? Were you given shots in your stomach?
I cannot imagine what you are going through, but please, please,please don't give up!
Too many people love and need you! You are so very important.........

WE need you, as well!

What meds are you on now? What do you dr's say?

Hang in there, baby!

Love,
Erin

Martha,
I am so sorry to hear your news - - that had to be a very scary experience. I don't have MG very badly, so my Mestinon dosages are low. I take it every two hours. Taking less, more often (with lots of water and food - even if it's only a cracker or some cereal) has worked for me.
Pls keep us updated - thoughts and prayers with you.
Sue

Martha,
I am so sorry to hear you are having such a hard time with your MG. Have you tried immunosuppressants yet?

Are you able to eat when you take your Mestinon? I always make sure that I take it with food or else it gives my poor stomach fits. Please don't give up. You will make it through this. I will keep you in my prayers.


Shari

So sorry to hear about your problems with plasma exchange.

I take propantheline 15mg x 2 with every dose of mestinon. It stops my stomach feeling like its being ripped apart with a knife, but I still get bowel spasms due to the mestinon. I take loperimide also which helps calm down the stomach cramps and the runs. Although some days despite taking this I still react badly to mestinon. Thats why I have to laugh when Drs say I dont respond to it.......why would I put myself through this if it didn't work?

Love
Rach

Hi Martha,

So sorry to hear all you having been going through. I take only mestinon and very sparingly because of the side effects. As others have said, always take it with food. I take half then wait a half hour and take another half. It seems to help some. I read someone takes Pepcid and it helps. Did you ask your neuro to reccommend something? Please don't give up, it will get better. Let us know how you are doing. Take care.

Hugs,
Pat

Thank you for your suppportive response. As you know, with this disease, we all need all the support we can get. Right now I am on prednisone. I have read you complaining many times about the steroid weight gain. I can totally relate. I feel like an oompa loompa. My face doesn't even look like my own any more.

I've had three rounds of IVIG. The last one didn't help at all. I had the 4 plasma pheresis in the hospital but because of the blood clot they say they can't do any more. I had a thymectomy in 2005 which put me in remission for a few years. No I'm feeling like there is nothing left to try other staying on the steroids. They prop me up a bit but not to the point that I am fully functioning.

I want my life back so bad. I am facing the possibility of going on disability and I really don't want to. I am a single woman and live alone. For me, right now disability feels like being half dead. Just don't know what else to do. . .

Martha

I know exactly what you mean about the side affects of the mess-tinon. However, when you can't stop taking it, there are options for handling the problems.

I went to a gastro doc when my neuro couldn't stop the side affects. The end result was that I ended up on 10% tincture of opium. I know, OPIUM? i really hesitated at first, but after a couple of very embarrasing incidents, I decided I didn't have a choice. I take 10 drops (about 1/4 tsp) when I go to bed and it controls the problem for about 24 hours. The prescription says you can take 10 drops up to 4 times a day if necessary. For me, the bedtime dose is all I need.

When I first questioned the gastro doc, he told me to take a look at pictures of anyone addicted to opium or any of it's derivitives; they always have a distended stomach and are very constipated because the opium (or morphine, etc) slows down the bowel. And just like mestinon speeds up the GI tract, the opium slows it down. I really wondered about addiction, but they monitor it very closely and I can't get a refill without talking with the doc or nurse and going over my symptoms, how often I'm using it, etc.

I'm like you; I had a thymectomy in 2005 and had about 3 years of pretty good results, However, the last 12-18 months have been really hard and right now, my eyes are being hardest hit (double vision, etc).

Also, like you, I'm a single women who supports myself and really hate the thought of disability so I'll keep doing what I have to do to stay in the game.

Are you taking any immune suppresents? They take a while to get in your system (6-12 months), but they do work for some people. I'm on cellcept, 1,500 mg in the morning and 1,500 mg in the evening and have been since 2000 when I was first diagnosed.

Stick with it and I pray you find a balance that works for you.

'Hey sweetie!!!!!!! You are soooo right, we need all the support we can get.....this stupid disease is so rare that most "medical" pros have no idea what to do.

I do hate the weight gain, but more than that I hate the cruel remarks people make about me. My own father has said that I am "fat and disgusting" - granted, he did have a stroke 5 yrs ago and suffers from aphasia, plus he is just MEAN, but it was still a terrible thing to say.....my beautiful little niece asks me why I don't look "pretty" and "thin" like I used to.

I think if people were a bit kinder, I wouldn't have such a problem with my weight gain - due to the pred - but if I don't take it, I DIE! It's that simple!

Even if you DO have to take pred for a while, hopefully, you'll feel GREAT once again!

Contact me ANYTIME @ erinhermes@hotmail.com

Love,
Erin
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