Sorry to hear of your troubles, but you have come to the right place. We understand what you are going through, and we can be with you every step of the way if you need/want us to be. There are plenty of seronegative people here to chime in for you also. I am seropositive, but I want to let you know that you have started to treat the disease to push it back already, so you are working in the right direction for improvement. There are myasthenics that work in the medical field here also to comment on your situation, so hopefully that will happen too.

I don't know what you've read, but many of us live active lives, including work and a regular schedule. Some more active than others of course, and those that cannot simply try to make adjustments(you mentioned slowing down). At the very least until improvement shows itself. Remember also that stress is not going to help, and will exacerbate your condition/situation, so stay focused on getting better. One year ago, I could not pick my ten yr old up(he is too big anyway), but I can now that he is eleven and bigger. So in time....in time. Be the patient, and give it time. I look forward to hearing more from you in the future as you continue to get better.

Best wishes for peace,

TJ

Hi and welcome,

You are just a week or so into this and have gone through a lot already. I'm glad you found the group, there is lots of insight and experience to help you through this.

To the point of working. I started my MG like you, almost exactly minus PlasmaP. I couldn't imagaine being able to sit or stand long enough to ever work again. I couldn't wash my hair or lift a fork.

Now,a couple months later I am working 4 -10 hour days a week and then some. NOT to say this will be the same for you . OR- I am back to my normal by far, but I am stronger than I was at the begining. It goes up and down a often. Some here call it a roller coaster ride. That is on the nose for me.

Everyone is a little different but also some of us are simalar in many ways. Read the posts here and talk to others as much as you can. You will find support and answers for many of your questions.

I will tell you resting is what we all need most often and you sound like many of us, in that that it may be one of the hardest for you to do. Don't push your self too hard or fast and stay as posative as you can.

Best wishes

Jeannie

you've described the bigest fear I had -- not being able to be an active dad anymore. I remember well when I was coming down with MG and suddenly couldn't put my 5-year-old on my shoulders anymore. I would try to pick her up and strain and sway while lifting her, and finally had to give up.

For some reason the idea that I would be a weak father filled me with dread--more than anything else. But I am doing fine right now (9 months later). Work was always fine -- I haven't missed any days since my thymectomy (apart from IVIG and frequent Drs visits).

The steroids are going to make your moods change, so don't get too depressed. It seems pretty bad right now for you, but it gets better, and with the proper and aggresive treatment, you shouldn't get this bad again.

Many of us have another autoimmune disease, and that might complicate things. Freddy Ferrer describes MG as a "two-fer" illness. You tend to get something else along with it -- he has Grave's Disease. Just look out for that.

Good luck in the coming weeks/months.

Welcome, I am sero-negative diagnosed about a year and half ago, I am on Mestinon , Prednisone, IVIG every 2 weeks, think I have finally convinced my neuro to try PLEX. I was on Cellcept almost a year, he thought it was not working so we are trying Imuran. I work 40 hours a week and some days are a real struggle, by the time I get home I crash. Rest is a big issue for all of us.. Please take care and let us know how you are doing. Great people here will turn into great friends!
Annette

hello,
I am sorry you have to go through this.
I was exactly where you are in March. I have done normal activities this past 3 weeks. I was able to carry my grandbaby just last week. I can give you that hope but I know one person on this site who went from the hospital to work. So we all are different.
I got the plasmapherissi treatments and then they started me on predisone. I wonder to this day if predisone didnt make me worse. I did have a negative reaction that took me back into the hospital.
Later I started cellcept and now I am going down on the predisone.
I wish you well. At first I too worried so much about the future. It will be ok, I feel I can promise that. I know it is a wierd promise isn't it.
Take care and we do get better.
Ann

Welcome. Sorry to meet under these circumstances but this is a great place to learn and share. I am seropositive but we all seem to have similar and different experiences. For me, the occular MG is a constant and the generalized problems come in waves, often when I haven't been good enough to myself. I was encouraged by one of the neurologists on the National Myasthenia website that cited a sizable study in Japan (I believe) that after 10 years most with MG functioned at a relatively "normal" level but had some hospitalizations and health interventions. My take on that, is I'll be fine with a little help from my friends and docs. I am still learning the lesson that I do not have to do it all myself.

I just found this website just a few days ago.I am adjusting to life with MG and I have a one year old and two and a half year old.Everyone on here is extremely helpful and positive.I have had a very very hard time with not being able to do what i want.Chasing babies included in that.I wish it was so simple and we could take a pill and just go one with our lives.I am only on Mestinon currently but that can always change.I have bad and good days like we all do on here. I'm still trying to get my head wrapped around it but everyday gets easier.If you ever want to talk let me know!

Welcome doc!
One of the things that I have begun to notice about joining this site and what it has done for me is tha it reminds me of what I have learned, how I am progressing and that I am not alone. Watching new people join allows me to reflect and my feelings and experiences.
I was diagnosed in October and wanted to attack MG like it was a computer problem that I could figure out and buy a replacement part for. I wanted to deal with this new problem like a Marine, understand that I had this new problem and just deal with it. I did not want to accept that I couldn't handle MG or that I couldn't handle not knowing what will happen next. Basically, I wasn't giving myself a chance to deal with everything coming my way. I was too busy planning to allow myself to deal with all of the emotions that I have every right to feel. I was trying to compartmentalize and move on without dealing with the emotions.
I found that coming here, while it did not give me final answers did help me feel better emotionally and even helped me to laugh my way through some of this. And the many years of experience has given me good questions and discussions for my doctor as well as helping me prepare for emergencies.
Do plan. Do plan to win against MG. Do not forget to give yourself some time and room to deal with your new situation.

Kimber

Glad you found this site. There is much knowledge here from so many. All the members have been my lifeline.
Your name, momsotired, says it all. My children are grown and I don't work outside of the home. I can't imagine working and raising a family with this disease but many here do. There are also a few other physicians on this site that I'm sure you will get to know.
I have been having plasmapheresis every 7-11 days since Feb. of this year. It takes a while for the anitbodies to circulate out of your body but once most of them have, you should hopefully be feeling much better.
I started PLEX (after IVIG quit being effective) with the schedule of every other day for the first week, 2 times a week for 3 weeks, 1 time a week for a month, tapering down to every 2 weeks, every 3 weeks, etc. for maintenance. I have tried going 14 days but my symptoms increased. In order to maintain a certain degree of wellness, my neuro has me on a 7 to 14 day prescription. Right now I am scheduled every 7 days through holidays and hope to give every 11 to 14 days another try in January. Does your hospital have an outpatient apheresis clinic? Sure makes it handy. My nurse told me they had a surgeon with MG who continued to practice with PLEX.
I'm also on mestinon and tacrolimus (AChR positive with resected malignant thymoma).
Wish we had a database here or somewhere to chart everyone's diagnosis, symptoms and medications. It would be so helpful.
Good luck and keep us posted,
sherry from texas

Momsotired,
I'm sorry you've had this happen. It is such an intereference on our plans, isn't it? I'm so very glad though to hear you've had excellent intervention. These are the very early days for you and you will have to be patient with yourself.
I am also seronegative. My onset was more gradual and I've thankfully not had a crisis. I was diagnosed a year and a half ago. I had a thymectomy 13 months ago due to increasing symptoms and thymic hyperplasia. Now I have IVIG every two weeks through the holidays and take mestinon 60mg every 4 hours, timespan at night and cellcept 1500mg twice daily. I've had plasmapheresis a couple of times with excellent results. The first time I had it for two weeks, every other day. It took at least three treatments for me to realize how good I felt.
I work in home health physical therapy which is very flexible, the only way I can continue to work. Two years ago I was seeing 20-25 patients per week and wanting more. Now I see 7-10 patients per week and wish I could do more. It has been a difficult transition. I spend a lot of time on the bed or sofa. I can't just go do what I want but have learned to listen to my body and know I can always do it tomorrow or the next day. I've been trying to get to the store all week.
Give yourself time (and heed Joe's warning, prednisone will cause you to be emotional). It definitely takes time to adjust and accept and improve with this disease.
Cathi

Welcome, though I am sorry for the circumstances that bring you here. I am early in my dxd, October 2011, though I've had it for about 2 years with a very gradual onset. I take mestinon, though without much or any relief. I have 2 kids, 12 & 14, and they have been wonderfully helpful with things that have become difficult around the house. I have another illness that has kept me tired and short of energy for years, so they are very good about respecting my limitations.

It's great that you have had good response from the doctors, though unfortunate for hospital visits. I believe it will get better for you. I hope you can find the patience you need as it will only help you. I can tell such a difference in my strength when I am stressed vs calm. Good luck!!

I am one of the docs on this site. I have had symptoms of MG for over thirty five years, have been on medication for one and only really doing well recently with a change of doctors. I am 65 and retired for a number of years, although extremely active during all those years, there are just so many hours in a day and just so much energy. MG affected both of my pregnancies, although no one realized that was the problem. I am also seronegative. You have overcome so many obstacles to get to this place in your life, and perhaps beginning to feel like things were finally falling in place and the blow is therefore even more difficult to deal with. Unfortunately this disease is unpredictable just when you feel the need to plan your future. Kimber put it so well. No matter who we are or what we have been doing, it is going to take some time to sort out what works, what work you can do and how the disease is going to respond in general and no amount of knowledge, preparation, and determination is going to change that fact.

I was in pediatrics and spent a couple years out when I had my second child. I can say that for me returning to practice was not a problem, I had been able to read some, went to the big conference where they discussed recent developments and was back. The harder problem was leaving the children during those long work hours.

I would recommend putting your energy into getting coverage, work and home, so that you can rest and recover from the acute effects and treatment and try to accept and get others to accept that you cannot promise or predict where you will be next week or next month. We are here for support along the way and there is no reason not to hope that you can can be fully functional at some time in the future if not tomorrow. For some time practicing energy management will be a must. Feel free to question and vent here! b.

Welcome, I'm glad you found this group early in your dx.
I'm also seronegative, Ice test, SFEMG, NC, RNC, and CT, all positive but mild though.

Dx Dec., 2010, during this time I had throat issues, I wasn't able to walk for weeks at a time, I needed help climbing stairs. Though the doctors said it was mild, for me it was more than mild, it interfered with everything I wanted to do and needed to do.
During this time my stress level was extremely high.


The beginning of my dx, I felt alone and depressed, I searched the web and found support groups, I would post many questions and weeks would go by before I got a response and the responses I got weren't helpful.

May 2011, I found this group of caring people and full of knowledge. I've learned a lot here, today my symptoms are mild, they are there to remind me the importance of balancing my day and all I do. Most important reminder, is to keep my stress level down as much as possible. I was retested again Sept., 2011, all the results came back same as above.

Take care,
Maria

probably I'm not the first to tell you IVIG takes some time to kick in, so don't give up hope on it yet. For me it was a course of 5 and then another q/month before it turned on and made a huge difference.

The important thing to remember is that life with MG is what you've already been living, only now you'll be able to improve...

Sorry for the delayed response- had more difficulty breathing and have been back in the hospital.

I feel so fortunate to have found all of you - really!

My biggest problem is I feel like I am disappointing people. I am actually a cancer doc - and with sick patients - you build quite a strong relationship - and I feel like I am letting them down. I am also responsible for all the people who work in my lab and their ability to feed their families....so I am overwhelmed not knowing what will happen. And of course my family! It hasn't even been 2 weeks and my 3.5yo daughter has been crying a lot and having tantrums (kicking and screaming which she has never had before) because I am unable to do things with her. What a heart breaker. The funny thing is that because I deal with dying patients - I was the girl who got in the car to take my daughter to school and at least once a week would tell her that we are lucky that we are all healthy right now. and yes....my 3yo thinks I am wierd!

And to Kimber - I was a military doc for a number of years....so I am looking for my SOP (standard operating procedure) of what to do.

You have all taught me that I will have to ride this ride. and I greatly appreciate that. With too many people depending on me- I am not sure how my life will have to change in the near future ....but I am going to figure out how to breath a bit better for today.

I really and sincerely thank you all for all the comments!!! So totally helpful!