Hi Alone,

My story is a little different. The drs. found my thymoma during a routine chest x-ray. i had no symptoms. After surgery I also was very sick with c-dif and that is when I got the symtoms.t rouble breathing ans droopy eye. I really started improving about a year after surgery, but I'm not sure if it's from the thymectomy or imuran. How long have you been on celcept? I know, like imuran, it can take up to a year to kick in. I felt my best after the imuran was increased to 150 mg, but i had to go back to 100mg, because my white count dropped to 2.2 and my liver enzymes increased. Now they are normal again. I know they are doing a study that will hopefully make it more evident if thymectomy is helpful in treating mg. I know if I were young and female, i would have it done. Having a thymoma I didn't have to make that decision. not sure what i would have done. There seems to be no one correct way of treating this disease and everything has a side effect. With imuran i had flu like symptoms for the first month, but they did go away.
good luck in what ever you decide!

Judith

Thank you for your reply. I have been on cellcept since mid=March of this year. At first I was taking 1000 mg but this last month he increased it to 2000 mg per day.

HI alone,

You know how I feel. I touched on some of this on my LONG post:

http://www.dailystrength.org/c/Myasthenia_Gravis/forum/12357971-i-doing-research

I have been gone from this site for over a year, I lost my husband to MG he was diagnosed in April 2005 at age 65, by the time he was seen by a neuro Dr he couldn't walk talk aer stand , he was put in the hospital that day the started him on Plasms Phresies,1st a day for 5 days ,also he was. getting IVIG every.day for 5 days he already had a feeding tube in because he couldn't eat , he had the droopy eye , his Thymus Gland was ok so they said they would not remove and yiur right about the age they told us because of his age they wouldnot since there was not a problem, he was on mestinon, 60mg 4 tims daily dr said he could take more if he felt he needed such as having a hard time swalling,, I would like to help wiyh any info I can if you want, I do feel the Drs go with what they feel works the best together and with that person, I wish you all the best of care , I know the pain of watching someone with MG , but there is a lot of good coming from some of these meds the Drs are trying.take care and stay with a good Neuro. Just make sure he knows a great deal about MG, ,KAT ,

Oh Kat, I'm sorry for your loss. You were a partner in the MG battle so you know ups and downs of this snowflake disease. You give good advice and appreciate your care and concern for the rest of us and the positive comments. (I see you are a fellow Texan!).
Wishing you all good things,
~sherry

Thank u , and please keep in touch I'd love to know how your doing, I was so involved with this disease for nearly 5 yrs.,I can't put it out of my mind because it consumed the last 5 yrs of our life, it took what was suppose to be happy days of our retirement, its an awful ting to go thru, my blessing to you, KAT,

Kat,
Thanks for sharing and being with us here.


What happened to your husband was terrible and the treatment he was getting is not right either. I hate to bring this up but PLEX and IVIG at the same time is terrible, and useless, if that was the case based on what I know. Based on what you are saying, he should've been on steroids, high dosage immediately for a week straight I believe, for starters....along with MEstinon and IVIG or PLEX too.

Are you saying that he went through five years of MG before an attempt at treatment? Oh my, I am so sorry if that is the case. I am so sorry to hear that if that is the case.

Thanks again for sharing, it must be difficult.

I appreciate it.

Best wishes for peace,

TJ

I'm sorry I didn't tell it all he was on steriods Prendisone went up to 40 mg aday.aNd Cellcept,2 in am and 2 in pm mestinon 60 mg 4times daily , after 6 months of being diagnosed and all the treatments he could eat so they removed the feeding tube, but when he began to having trouble swallowing the Dr would put us back I South West Medical Univ. Hospital in Dallas. And start him on IVIG we would always be there at least S to D days till he could swallow again, we lived like that for the last five yrs of his life, closer to the end he got really weak and couldn't swallow, feeding tube was put back in ,he stop breathing and was put on a respirator and he was in ICU for 2 month before his heart stopped , we never thought in a million yrs he would have come down with this God awful disease, u see his pic these were younger pictures n but this man was the strongest man ever, he owned his own Construction Co and work hard all his life , we were really blown away when the Drs told us about this disease ,and I see and read about these people on DS that have this and it breaks my heart ,I want to help so much,and u feel helpless I took care of Fred everyday till the end, and now the past 2yrs I'm lost so it makes me feel connected When I can tell them what I went thru and tell u your not alone, I know since we started in 2005 they have had new drugs come out and I'm hope and praying something will cure this one day. And yes I live in Tx we live in Farmersville,TX , Natives of Garland Tx . Hope I've explained myself a little better, if u think of anything else please ask me.

Thanks so much for sharing the intimate details of this. I can just imagine...You hear about many people struggling with the disease, and the idea is always that we are going to get better with treatment. Obviously, that is not always the case. We all know it can kill, but it can really hit home when you hear it first hand.

Thanks for being here with us.

I hope I haven't said to much, I'm on my blackberry and I've noticed I'm hitting the wrong keys, my grandson is using my laptop, , the Drs told us they were hoping he eould go in remission, but it never happen, ,after he was diagnosed webgot to thinking yrs ago at least 20 yrs Fred had trouble eating at times he would have to eat really small bites so he could swallow and wouldn't chock, but we never thought anything was wrong, never expeceted something like that was coming to him , so I think if we had pushed that problem with the Drs they might have found it then, and he might have had longer to live, I can't stop thing back how he acted . But nothing we can do now, I have a daughter 46 her name is Sherri she would come on the weekends so I could rest and she would take care of him ;ust so I could have a break, its been Jan 21 2009 we still can't believe he's gone, I know they are using different meds and we want to keep involved and learn as much as we can. Before I left DS, I was talking to A lot of people all over the world , icouldnt believe there were so many people , the sad thing was this disease was so new to them, you could tell by talking to them that they didn't have a clue how bad it can get,if ur on here a while you'll meet a lot of people,, I don't mean to bother u but please keep me posted on the treatments they try on you,Kat

Kat your story made me cry! im so sorry for your loss! i have my brother in hospital with this dreadful desease. its four weeks now and no improvement at all. still has the feeding tube.hes being having plasma and IVIG treatments and also last friday had his second chemotherapy. the last couple of day is feeling really fatigue. im wondering is he ever going to get better?
God Bless all of you!!!!!!!

I'm so sorry to hear about your brother, this is such an unpredictable disease, at 1 min Fred would be ok and the next day he wouldn't be able to swallow, the thing I would worry about is if he went into respitory failure, he can do that but can come out of it to, how long has he had MG? I always think I'm gonna say to much,if I do feel free to tell, I just feel so much compassion for everyone who has this, , I know we spent weeks at a time in the hospital in Dallas Tx ,and after a few treatments we'd walk out ,until after 4 1/2 yrs he started getting weaker we went to the hospital for some treatments after a couple of days he went into respitory failure he was put on a respirator and stayed on it in ICU for the last 2 months,,so for 2 months the kids and I had to watch as this disease took him from us Fred was 69 when he pasted,Jan 2009 , I'm going to pray for you and your brother and hope he pulls thru this ,, Please don't cry n I've cried for 2 yrs , we had just retired and moved to the country and was gonna enjoy the rest of our life together ,But God needed him more than I . I have to believe that other wise I'm gonna lose my mind , 45 yrs together , its not easy trying to go on with out him, Please believe I don't want to upset you . You've got to be strong for him , if its like Fred he's probably scared , please let me know how he doing, I'm here and I've got a shoulder if you need , this is not something anyone should have to go through., I'm here to listen God Bless KAT , ,

my brother started having problems last october! diagnosed in november had a thymectomy in march. the operation was a success had no problems with it. and he was ok until easter then the troubles started. mainly he couldnt swallow he lost a lot of weight until he ended up in ICU. so far no respitory problems. he turned 60 last christmas hes being in good health all his years. he was looking forward to enjoy his retirement with his wife and 2 children when this came up. it makes us all sad to see him losing hope after nearly 4 weeks in hospital with no improvement. He is a very proud man. i just pray to God for things to change soon. In my eyes all of you are Heroes. you have so much courage!

Wow this sounds so much like what happen is us , but our kids are grown, first time we spent in the hospital it was 5 weeks and he was having the same problems swalling even talking eating and walking , but after7 Plasma exchange's we left the hospital, he was 65 at the time,so just keep your faith ,he could come out of this it seems to take its own weary time , please let me know what's going on , God this sounds so much of what we went thru, please tell him he's not alone,and he can still come thru, Kat ,

I have had myasthenia for 15 years. Got it when I was 26. I had a thymectomy immediately after diagnosis. It did nothing to help the disease. My thymus was normal.

I've been on prednisone for the whole duration. My disease requires 25mg per day to keep it under control...virtually symptom free. Taking prednisone for over 15 yrs has taken its toll w/ side effects. My testosterone levels dropped because of it, now i have to take testosterone supplements. My sleep isn't all that great either. In light of that, I started taking imuran about 9 mos ago.

My doc started me off slow. I worked my way up to 200mg per day and have been on this dose for 3 mos. I was able to shave 5mg of prednisone off every other day. I couldn't do that before without having a flare up. However, I do think I need to stay at this dose for a while longer before the imuran becomes more effective.