Kathie Glenn,
I guess I have some words of support, I don't know how wise they are. My original symptoms started in August 2007 and I was not diagnosed until November 2008. During those 15 months I went through a lot. The worst part was feeling depressed and that I was crazy. At the time I was 35 and the doctors couldn't understand how my different symptoms fit together. Initially they thought that I may have had a stroke. I remember being in the hospital when the symptoms first appeared and the nurse leaned close to me and said, " now is the time to tell us about any illegal drug abuse". I was so weak and stunned that I had no reply.
Until you align yourself with a good neurologist you are probably going to have more questions than answers. My first neuro was not a good fit. He sent me home to wait and see if my symptoms went away. Eventually I met a neuro who perservered with many tests, clinical observations and listened to me.
I have noticed that stress is one of the things that my MG just cannot handle. If I find myself stressed, I notice the increase in weakness immediately. I have learned to back off of being supermom and having a good support system.
I too gained 40 lbs as I was on Pred for a year. I just weaned off of it on January. I am on Imuran and Mestinon and I go for IVIG once a week. I have generalized MG so my weakness affects everything. I do know that when I feel that I am getting worse that stairs are my first indication.
Do you have confidence in your dr and the direction your plan is going in? Do you have an MG specialist in your area that you could be referred to?
I know that there are many others on this site who will respond with words of wisdom for you. If you need more support you can message me. Please take care and know that you are not alone. Melanie

Kathie Glenn,

I'm sorry to hear of all that you're going through, it must be really tough, and I do know what you're feeling, since I went many months without diagnosis, then had diagnosis thrown at me one after another, then taken away and given again. At one point, I did start thinking that i'm really going crazy and when the neuro sent me to a psychiatrist and a psychologist, I went to both but they said my symptoms were not caused by mood or stress. Lol. That left me with a dead end. I tried three neuros after that, which all gave me different diagnosis and seemed to say things for fun. I gave up and did not go to a neuro after that. I'm not a very good example of what you should be doing as I do think that good neuros should be found. Lol. Where do you live? Perhaps Annie or the rest can help recommend a good one? I live too far away if not I'll have gone over.

Meanwhile, to keep ourselves sane and happy, I realized the easiest way was to focus on things I can do, and do them to the best!! Most of all, it also helps when we start thinking about others too. Do you have people who can give you love and support? Whenever I think of them, I feel that I have to go on, i have to recover. That's what made me last through this 1.5yrs. Find things which you love doing and try to do them everyday. Learn andcount the little blessings we have each day and things will become more beautiful. Someone once told me, appreciate and our lives will appreciate. Enjoy and we will become able.

But I also do think that symptoms need to be sorted out and a good neuro is a must! Do hope that you find a good one soon, one who really cares, would listen and won't say things for fun!
Anytime you need love and support or just a listening ear, come on here and rant! This is a great place and i love all of them here.

Melanie: Thanks for replying. I went to a Neurologist here in Columbia, SC in the beginning and he referred me to a neuromuscular neurologist at the Medical University of SC in Charleston. He is as far as I know an MG specialist. He has MG clincis on Mondays and Wednesdays and does procedures (i.e. SFEMG) on Tuesdays and Thursdays. I guess the part that worries me the most is not knowing whether the leg weakness and heaviness is from the extra weight and medication or if the disease is progressing from ocular to all over. It just seems that when I go to my appts he doesn't spend the time talking and explaining to me and listening. I always leave feeling like I don't have my questions answered. I want to have confidence, but am not sure that I do at this point. Is that the depression talking? I don't know. I may do some research and see who I can come up with within several hours driving time from and decide soon if I need to see someone else. Thanks for taking time to write. I value your opinion and appreciate your caring. Kathie

Kathie,
I am seronegative. I was diagnosed on the basis of a positive SFEMG and clinical observations. Does your dr do the tests on your muscles to see how weak you are and if it is proximal or distal weakness? My dr would spend a lot of time doing this but he would also listen to how I described my weakness after different activities. I took a photo of my eyes at the end of the day so the dr could see how bad the droop was in both eyes. I know that getting the right dr is the key for you so I will be sending good vibes your way. ~ Melanie

Melanie: The doctor didn't discuss the sfemg with me except to say it didn't show any progression of the disease into my body. He didn't discuss "promiximal or distal weakness". In fact, he doesn't spend much time at all discussing anything. I do wonder how the results can be trusted when I am on Prednisone and Cellcept. I also take Mestinon, but didn't take it the day of the sfemg. I am going to have to take this further by asking for a consult for them to just sit and explain all of this to me. Thanks for writing.

http://neurotalk.psychcentral.com/thread120198.html

Kathie, I'm confused. Did you have yet another SFEMG after this thread?

A consult with your neuro sounds exactly like what you need.

Annie

Annie: No I haven't. It was three weeks ago and was my 2nd one in 15 months. The first was for diagnosis purposes and the 2nd was to see if the disease had progressed to my limbs because I was complaining of weakness and heaviness of the legs. My legs feel like they don't want to support me. Kathie

Hi Melanie
I also have generalized MG that was diagnosed in Dec. 2008. Mestinon and prednisone since then. Pred down from 120 to 30mg every other day. Started on Cellcept and had my first 5 IGIVs in Feb 2009 and 2 a month since then. I have experienced everyting this disease has to offer.
I am fortunate that I have also experienced much improvement. No more double vision, swallowing or chewing problems and my stength and breathing has improved. The pain is the only thing that has been worse.
My Neuro has told me he hopes that the IGIVs can be spread out eventually.
I see you get IGIVs weekly and wondering for how long?
Have you seen improvement?
I have read a lot of post's but no one mentions how long they have been getting IGIVs.
Since I started taking Cellcept at the same time I am wondering if my improvement is a result of the Cellcept, the infusions, or a combination of both.
Maybe niether.
If you would reply I would appreciate it. Thank you.
Tony

Hi Tony,
I have had IVIG a few times when I was admitted to hospital for an increase in weakness and difficulty breathing and swallowing. In January 2010 I weaned off of pred after being on it for a year. My dr agreed that an IVIG schedule was a reasonable treatment plan. In Feb 10 I started my monthly treatments. I go to the hospital for two days a month as an out patient to receive the IVIG. As of today I have had four months worth of treatments.
I take Imuran and have been on it since Nov. 08. My dr originally told me that the Imuran takes at least 6-9 months to start to work. It is really hard to say what is working at what time. In between I have had the full sternotomy thymectomy in Feb. 09.
I believe that the meds of Imuran & Mestinon and the IVIG are working together to keep me going. Prior to diagnosis I was pretty much in bed or on the couch because of severe weakness.
Not really sure if this is helpful.
Melanie