Hi. I'm the mom with the 16 yr old with MG and we live in the Bay Area. My daughter was initially seen at UCDavis but now sees Dr. Yuen So who is the director of the nuero clinic at Stanford. She had her thymus removed at UCSF. Are you in Northern or Southern Cal?

Hi, Northern CA.

What was your experience from UCD? My therapy is based on Dr David Richman's knowledge there(the director of Neurology, Dr of the year for work on MG). I am curious how the disease is treated differently all over...

I'm from Central California. I live about 3 hours south of UCD.

I followed your suggestion and have sent an email to Dr. Richman to see if he would be willing to see me. Thank you for giving me his name and web site.

Alonetilnow,

Good luck with the email. My current Neurologist is at Kaiser and she studied under Richman. He teaches there and is the Head of the Department. I sent him an email awhile back and never heard from him. Although I did not ask to be seen by him, I was asking for advice. That was before I had really listened to/paid attention to my Neurologist. I wish you well in getting better to receive treatment for your condition. On his website it clearly says to call to see if he is accepting new patients:

(800) 2-UC DAVIS.

He does have quite a resume'

Again though, I am not trying to promote him here, I am merely trying to get a feel with treatments as prescribed by neuros/dr's all over the states and globe...

Peace,

TJ

Hey TJ ,
I am in Flower Mound Texas, right outside of Dallas. I see Dr. Muppidi at UT Southwest in Dallas a teaching hospital. I take Mestinon 60 mg every 4 hours or so, 30 mg predinsone (have been up to 40 came down to 20 had more swallow issues) 2000 mg Cellcept, says I will be going up to 3000mg, and take IVIG once a month. His hope is to get me off the predinsone, and mine also.. Good days, bad days... have been sick this month with bronchitis so had more symptoms... healthier days to all.. Annette

Hi,

I live in Rhodes Island, but found local drs. not too familiar with mg. I am lucky to live only 1 hour away from Boston. I had my thymoma removed and treated at Mass General by Dr. Matheson. I was diagnosed a few months later with mg and treated locally with mestinon and high dose pred. I recently started seeing a dr. at the Lahey Clinic ,who is also on the board of MGA. She started me on Imuran, and will hopefully wean me off the prednisone. Unfortunately, I was told it could take up to a year for the imuran to kick in. I think had I started with this neuro, who is more up to date and experienced with mg, I would not been on prednisone for so long(over a year),before introducing Imuran. While it initially seemed like a wonder drug, long term side effects that have bothered me are insomnia, anxiety, and depression.

This was a really interesting question,TJ

Judith

i'm on Long Island, New York...have had ocular mg for about two years...have been free of double vision and droopy eyelid symptoms for five months since getting the IVIG infusion...was on mestinon which didn't help but did upset my stomach and made me go to bathroom every 30 minutes! Hope your IVIG treatment produces good results as mine did!

My daughter saw Dr. Richman twice. Both times we were seen three hours after our scheduled appointment times (and we lived several hours away) so it was a frustrating experience. Dr. Richman's emphasis seems to be on steroid treatment for MG but my daughter wasn't done growing at the time so we all agreed to hold off. He did recommend the chief of pediatric surgery at UCSF for the thymus gland removal and she was fantastic. Another (nonMG) specialist put us in touch with Dr. So. He is very well known worldwide and sees many MG patients. He is prompt and has a conservative treatment approach. Thanks.

Awesome to hear from you all. I agree that this is interesting stuff..Let's keep it coming. Love to hear from others and your story.
Sarah, that is interesting what you say about Richman since my Neuro says she studied under him and is saying his emphasis is on Cellcept. She interned under him at UC Davis. I am actually gonna ask her about that. I will let you know here what I find out. I am glad to hear that the end result was a happy one after seeing Dr Richman. Too bad he seems so busy. I mentioned he did not respond to my email, but I did tell him who I was seeing, and perhaps he just felt "why bother"?

Annette, I asked my neuro about increasing to 3000 and she said that is not something they would do and saw no reason to increase.

Judith, everything I read seems to indicate that Cellcept should be replacing Imuran for all purposes. Imuran has been around for awhile and has certainly shown to be effective, so I wish you the best in your treatment and look forward to us all feeling better.

geohab, I have read some different things about IVIG and how it can work for a long time and some say a month or even less. I believe you said before that you have done more than one. Or you have a schedule with no meds at al. Right? Either way, of course I wish the best for you man. My results from IVIG have been good I believe, and as I mentioned, I am trying to sustain and progress from here.

Good stuff people. Very encouraging and nice to read.

Thanks and peace to all of us.

TJ

Again, who else would like to share? Love to hear from ya!

Sarah,

I got my email back from my Neuro and I think perhaps you got mixed up as to Dr Richman's emphasis. She replied to me:

"You are correct, it is Dr. David Richman. He is a big fan of cellcept. The times he starts someone on steroids is when they are not responding to stuff like cellcept."

Your daughter was too young for either as you mentioned, so I'm not sure what you read into your visit.

Best wishes,

TJ

Still waiting to hear from other....Please share with us!

Hallo there, I, too am in CA; southern CA. (North County San Diego, actually) I am from the north east, and I miss back east very much. But I am here, now, and won't be going anywhere soon. I have been prescribed Prednisone (who with MG hasn't?!?) and Mestinon, and IVIG. The first two I could not tolerate, and the last did no good, and even made my eyes worse. Also, I do believe the Pred. makes me feel worse, and I have such violent, bad side effects it is impossible for me to take. Steroids in general do not agree with me, and so I am not in a good place at all at present, and the disease is progressing FAST and out of control. I am pretty down and discouraged. Oh, dear! Sorry this is a bit of a downer....

Kerry Bunn from Ringgold, GA -- just across the state line from Chattanooga, TN.

Currently taking 2,000mg Cellcept, 60mg Mestinon every 4 hours, 30mg Prednisone, 40mg Pepcid, 40mg Prilosec, 15mg Lisinopril, 150mg Effexor, 600mg Alpha Lipoic Acid, B-Complex, Advil/Tylenol prn, when my pain is really bad I use Hydrocodone or Tramadol.
This is all for MG, Small Fiber and Autonomic Neuropathy.

Main neuro is Dr. Christopher Lee and Vanderbilt University Medical Center - Neuro-Muscular Division.

PS: PLEX twice, IVIG twice (2nd series this week)

I'm also in Georgia. I am currently on Prednisone, Imuran, and Mestinon; did a few rounds of IVIg within the first year after diagnosis; and just finished up participating in a drug study. Not sure what we'll do next - either add in Methotrexate, try reducing the prednisone, or leave things alone for now and see what happens.

Sleepyeye..."who hasn't?" in reference to Prednisone...I think that is part of what this is about. Was your meds prescr from the east coast or west?

Jenn good luck w everything and please keep us updated if u can..

Kerry how did u get neuropathy? Was it from med?