TJ:

The doctors cannot say for sure, but it is possible I contracted the vast majority of my problems after a Tetanus vaccine.

My mother was one of the 500 who contracted GBS from the Swine Flu vaccine in the 1970's. It seems there may be a genetic predisposition towards reactions in my family.

To be safe, no one else in my family (grandkids included) get vaccines.

I have the full, long, story on my blog at krbunn.blogspot.com

Hello,
I am from Central Ca. I am treated at UCLA its a four hour trip for me one way!!! very long drive to see a doctor once... I have not been happy with ucla so i think i will be switching hospitals, maybe driving up north will be better for me..

I'm in North Texas, suburb North of Dallas. I started a trial of mestinon in April 2010 and was diagnosed May 2010 due to good response to mestinon and (finally) doc seeing ptosis. All blood work and testing was negative, symptoms indicated all was NOT negative. Chest ct showed thymic hyperplasia and had thymectomy August 2010. Now I take mestinon 30 or 60mg every 3-4 hours and IVIG one day every 4 weeks. This last round of IVIG (last week) seemed to work the best so far with very minor headache and a decreased need for mestinon (first time for that!). Neuro wanted to start prednisone, imuran or cellcept last October but I really wanted to avoid that if we are looking for improvement from thymectomy. If, after a year or so, there is no improvement from the thymectomy I will consider those options.

Hi, I am from Huntington Beach, Ca. I currently live in North Carolina. I have had MG for almost 20 years now. I was diagnosed when I was 14 years old. I had a thymectomy immediatly after my diagnosis. In my case I have not gone into remmision. I have some really bad days and some good days. I do IVIG every 6-8 weeks. I am on 20-25 mg of predizone, and take mestion 60 mg every 3 hours. It feels very lonely sometimes with this disease. I am glad I found this group.

Hi
I am in Fayetteville Nc I see DR. Jame F. Howard at UNC chapel hill
I am on mestinon and cell cept i have had a transternal thymectomy and have plex every other week until i can be on cell cept only, have only been on it for 4 months. I have tried Prednisone but had such a sever allergic reaction that it is no longer an option!
Sleepyeye have you tried plasmapherisis? it really helped me when nothing else would.

I'm from NY, NY but now live in the Capital District of NY and work for state government. I was struck with MG symptoms on February 15, 2005 and went throught the mill with doctors until finally being diagnosed (by a nurse, first) in August 2005.

By the time I was diagnosed, I could barely eat. Though I began taking Mestinon early on, I deteriorated precipitously over the next two years, finally nearly succumbing to the disease in December 2008, at which time I went into a coma for a week. This after being "Code Blue."

I currently take 200mg of Imuran and 5/3mg of prednisone (alternating days). I chew on some Mestinon occasionally if I have a bad day, but those are now few and far between, thankfully.

The most critical drug for my recovery was prednisone. It pulled me out of coma and gave me the first relief I'd had from terrible symptoms. I did take CellCept (2g/day) for 18 months but it proved worthless for me, hence the switch to Imuran. I have done untold numbers of PLEX and also some IVIG, both with some success.

Overall, prednisone is king in reducing symptoms from this disease in the initial phases. Longer term, CellCept or Imuran take over. But, were it not for prednisone, I'd not be writing this narrative.

I was just thinking this morning, so bad were my symptoms that when I was taking CellCept (I was taking the liquid version), I couldn't even swallow the stuff without choking. Interesting irony.

Curt

It sure is interesting to hear where everyone is from and what is going on with them. Especially as far as treatments/plan of action everyone is taking. It seems clear that so many people have been on Prednisone, and some not happy with their course of treatments. Prednisone is one of the first line treatments for MG, but obviously it does not work for everyone, not to mention all but guarantees side effects, and some serious esp long term. I think that is one of the unfortunate things about MG....There is no "one" treat all medicine for our condition, and all treatments come with risk. I did not mention that my thymus is labled as normal. Personally, like Cathi, I have not made Prednisone an option for my MG nor did my Neuro want me to, and while I was not even thrilled about IVIG or Cellcept, since I decided to do both(had to force myself because of a scary, head injuring fall), I have been feeling better. I am looking for much more progress, and I am hoping Cellcept will bring that to me. I had an appointment a week ago today with my Neuro and Gen dr, and both were encouraged with my progress. Neuro believes I will be feeling much better this year, and told me everything I wanted to hear except for getting off meds. Time will tell...Gotta keep fighting as everyday gives us another chance to feel better.

Plenty more in our group out there! Maybe some new group members!

Sound off! We'd love to hear from you.

Peace to us all,

TJ

Bumping this up so it is seen more easily...

Love to hear from everyone.

Hi , i am from Ca. half way between San Fransisco and L.A. I was directed to go to ucla as they have a whole department of people that specialize in M.G. however i have been driving down there for a yr now and i have decided i am not very happy with ucla! I just havent been treated the nicest there and they have messed up on my appointment 2x now.. After a 4 hour drive with a new baby you can say i was a little pissed especially after the second time! sorry for my negativity towards ucla when they are suppose to be the best, but in my eyes they are not!

Hi, I am in London, diagnosed while abroad, symptoms started to appear soon as I landed (hospitalised). I have a young baby which appears to be the trigger (cant think of any other reason as I had no prior illnesses!). Started on 60mg Mestinon 6 per day and 20mg Prednisone whilst abroad - that worked. Back in London flight took its toll went very low again (back in hospital). Changed to 60mg Mestinon 4 per day, 30mg now 40mg Prednisone. I am getting better every day! Seeing neuro next week to discuss immuno-suppresant and progress. I am hopeful as I am so much better compared to where I was 2 months ago! It even seems like I might be able to go back to work as planned.

Hi I'm from New Hampshire. I was just diagnosed the past April. I'm only in Mestinon. I've maily had issues with my eyes is double visione, blurred vision, droopy eyes. I think I have a had some other problems, but not sure if they are really from the MG or not. Sometimes it feels as if I'm looking for other symptoms. I was officially diagnosed by a neuro with a physical eval. He sent me for lab work, but started me on the Mestinon that same day. Half an hour after my first dose, my eyes were much better. The lab work came back negetive, but he wasn't suprised. I am schedule for more labs in two weeks.

Anewlifetobe- I can recommend Dr. Yuen So who is the director of the neurology clinic at Stanford in Palo Alto. Where are you delivering? My daughter also sees an excellent (and very nice and friendly) pediatric neurologist, Mark Koukkari, who practices in Cupertino in case you need a consult for the baby.

Hello all,
I'm in Southern California now but I used to live in Northern California, I was a patient of Dr. Richman's at UC Davis. I I have nothing but praise for the man and my experiences with him. He is very busy as you can imagine but he is definitely the best. Before we settled on my current course of treatment we experimented with all the options. When I first went to see him I was in bad shape he got me on large dose of prednisone to get me somewhat stronger in addition to IVIG. Once I was strong enough I had my thymectomy. From that time on I was on CellCept and we reduced the prednisone to zero, for a while I was in remission and things look great until I lost my insurance and couldn't afford the CellCept.
Nowadays I'm in Los Angeles I'm currently going to UCLA Olive View and seeing Dr. Mishra, I'm not too thrilled with them. I have an appointment coming up next week with UCLA Dr. Seigh. I hear he's great, Have any of you had any experience with them ?

TJ and I had a conversation about Dr. Richman while ago. He seems to be in the forefront of the research and is quite active in many of the Myasthenia Gravis associations, I found my experience with him to be quite good, the only thing I did not like is that he is so busy that is hard to get an appointment and what you do have an appointment you do need to wait quite a long time and he's in and out pretty quick unless there are something needs to be done. So be prepared to have your questions ahead of time I write them all down.
When I went to crisis a few years back I ended up at San Joaquin General Hospital and the ER nurse sat me in the waiting room for hours my wife called Dr. Richman and he personally got on the phone with the head of the emergency room and got me taking care of. Also after my thymectomy he was the first person I saw when I woke up any stop by every day to make sure I was okay. You don't see that too much anymore

Anyone from NJ.......