Finally out of limbo- now what?
 

Morning all,
I talked with my neuro last night over the phone. He reviewed my results and confirmed diagnosis of MG. He told me I could either start on prednisone OR mestinon but he wanted to start prednisone. He stated that prednisone helps manage the disease whereby mestinon only manages the symptoms.

While this seems true (from what I've read) I'm confused as to his position of it's one or the other. I have read other's posts that they are on both medications. Perhaps it's because I'm new that he's starting slow?

I definitely want to find a new neuro. He was very blasé about the diagnosis- stating that some people "don't even know they have it." Really? I definitely know I have it and I know I couldn't hardly talk or swallow last night and I definitely know I want a doc that acknowledges my symptoms, their affect on my life and validates that.

I have so much going on in my life- 4 kids (1 who is only 2), in school to be a Nurse Practitioner, working full time- I am praying that once I get on meds I can feel good enough to make it through school to my new career. What I don't need is someone telling my husband that this is no big deal. I already feel like my level of what I can do has changed and my husband has been very supportive of that. I hate to see that change with a neuro who acts like I'm making a bigger deal of this than it is.

I'm in Maryland- not too far from Baltimore. I see that Univ of MD and Hopkins both have MG clinics- does anyone have any experience or heard anything about the clinics?

Thanks for listening to my slight rant!
Barb

Hello Barb,
Try not to be too hard on your neuro. I think there is truth in his statement that some people don't know they have MG. I didn't, until my symptoms got so bad I was sent to a neuro by my optometrist after he noticed my right eye was almost shut. My situation was similar to yours. I was diagnosed in 1992. At that time I was in my third year of night law school, with two sons, a husband and a full time job. My symptoms at that time were a droopy eye with problems chewing and swallowing. My neuro put me on mestinon and ephedrine (which you can't get anymore). My symptoms stabilized and I was able to finish school and practice law for 20 years. My MG progressed then, and I had to stop working.

Looking back, I think that I've had MG since my teenage years, but didn't know it. Always had a droopy eye and I couldn't participate in endurance sports. Heat has always bothered me.

I wish you luck, and patience on your new journey.

PS.....
Maybe it's better that your neuro downplayed your MG to your husband. When I was diagnosed in 92, the neuro took my husband aside and told him that one day I was going to choke and die. My husband didn't tell me this until a year ago. My poor husband. No wonder he watches me like a hawk.

Barb,

I'm not trying to tell you what to do, but are you sure that you want to be hooked on steroids? There are other treatment options that don't come with as many side effects as Prednisone!

Starting on Pred OR Mestinon? That's weird. It's usually definitely Mestinon and the option of having Pred, too—not either/or. And did he sufficiently go over what the issues potentially are with Pred? Did he say to take calcium/vit. D while on it, plus an omega 3?

Yeah, I think you should consult with a MG expert. If you can manage to go to JH or Mass General, then go!

BTW, Pred can make someone with MG temporarily worse before they're better. Doctors throw that drug around as if it were candy. It can CAUSE other disease states such as diabetes, brittle bones, infections, etc. Most MG experts don't use it as a "regular" MG drug, but as a "rescue" drug when a MGer gets worse, and then has them on a fairly rapid taper. If they have a MG exacerbation or crisis, IV Solu-Medrol is usually given first, followed by tablets.

It sounds like this guy could care less about you. Or is he only lazy? Sorry, but this is all very silly. MG is a serious disease and you deserve a neurologist who is equally as serious!

Whatever you do, I hope you feel better soon!

:hug:
Annie