I am newly diagnosed. I have gone through the most bizarre denial - convinced I have been misdiagnosed, its all in my head, etc. I started out with double vision, which drove me to see a doctor only when it got so bad I could hardly drive. (Two eye doctors sent me home saying there was nothing wrong with me). Then, about a week ago, my arms and hands felt so heavy - like there was wet cement in them. I've had tingling in my face and some slurred speech. Zero throat or swallowing or breathing problems. (Which I am very thankful for, especially after reading all of the posts here.) I had a massive panic attack fearing I would stop breathing.

I guess I just can't believe that an otherwise perfectly healthy person can get this strange, random and relatively rare disease. Sometimes I am fine, and sometimes I can't see without a patch and sometimes I feel pain in my arms and neck, as if I've been working out too much.

Now I'm on this brand new drug. The neurologist (who is a very nice man)basically said "you have myasthenia, here's some pills" and sent me home telling me not to worry. I am drooling from the drugs, and still have the double vision and feeling of heaviness in my arms and neck. Its only been a few days, but I'm just feeling scared and frustrated and hoping I'll wake up and this will all have been a bad dream. What's the point of taking a medication that doesn't help the symptoms and leaves me drooling and running to the bathroom?

What can I expect with this? Does this medication work for most people? Do most people get worse before they get better? How long will it be until I know that my case will be mild and not end up with choking and breathing problems? These are questions I wanted to ask my doctor but he just didn't seem to have the time.

Thanks for reading this vent. So glad this forum is here.


K

Hi KTunes,
With the symptoms you describe, the MG diagnosis seems quite obvious.
What kind of medication do you take and at what dosis?
Some of are quite rapid, others take months to be effective.
I started about a year ago with the same symptoms as you, and the only one left is a weakness in the legs.
I'm still on Mestinon+steroids+Cellcept but the doses have been adjusted downwards, now daily at 240 mg Mestinon, 25 mg Pred and 1750 mg Cellcept.
Don't stress (it's bad for MG'ics…) and be patient…
Maurice.

I know this is a frustrating disease! It is also very scary, especially since some days you feel "normal" and other days it is hard to get out of bed. If your doc says you have MG, then chances are you have MG. You may want a second or even third opinion, but stay on your meds! I am not a dr., but mine got to the point to where breathing and swallowing became a real issue, in fact I was in the ICU for a while there - not fun!

I also wake up and hope that this is all a bad dream, but it's not. On the positive side, this disease can be controlled (for the most part) - just make sure you have a good neuro - that can be a life saver!

In the meantime, try and take it easy and not stress too much ( I know you probably think thats a joke, but stress really does effect MG)..........


What meds are you on? I'm on 20 mg of prednisone, 1000 mg of cellcept and 480 of mestinon. I also work 6 days a week most weeks, so you will be able to resume your normal life soon - just don't wait too late and always take your meds! Steroids worked miracles for me - mestinon not a much

Take care!
Erin

Thanks Maurice and Erin. I am taking mestinon only, 180 mg per day. Seems like a pretty low dose, but its making me drool like a rabid animal (which I have to admit is a little bit amusing). I am a singer/guitar player, so this problem with my hands and arms and slobbering is especially depressing. I am really looking forward to the moment when I start slurring my speech and dropping my guitar onstage - they'll all say I'm on drugs. Had to cancel a charity performance tonight and I'm really bitter about it.

I know I need to give it time, but the medication does not seem to be working and in fact makes me feel really horrible about thirty minutes after taking it. (Feels like the mg symptoms, only more weakness than before I took it). I am in a lot of pain from trying to keep my head up. It seems worse now than before I starting getting treated. I am willing to keep this up for another week but if it doesn't start making me better soon, I think I'd rather not keep taking it. Steroids are out of the question - had to do that once for a back injury and they made me nuts.

Erin, I felt terrible reading about your breathing problems and ICU visits. I'm so sorry for you. That must have been really scary.

I'm learning to stop being angry and self pitying. I know there are many worse things out there and in some ways I really dodged a bullet. (MS or brain tumor would have been a heck of a lot worse.) Your support has been really helpful; please stay in touch.


K

Hi and welcome to the forum,

Your post made me remember to when I first started taking mestinon, and I use to walk around with tissues so I had somewhere to put all that drool!! My pillow would be wet in the morning, but it did help me,and I'm still using it(much less) now, six years later.

I know what you mean about singing, I use to sing alot(was in a couple of choirs many years ago) the first time my voice quit on me I was dumbfounded, now its no where near as bad.

MG is so very different for every person, so what happened to us might not happen to you.

Has your neuro suggested any other forms of medications, I think most of us are on something besides mestinon, but its very much a "personal" thing, as in the doctor usually asses the situation and decides whats best for you.

I hope I've helped a little, and please keep asking questions, I wish I had had this place when I was first diagnosed, it really is a great place to ask questions, vent and talk.
take care
redtail

The usual dose for Mestinon is 60 mg each 4 hours but could be modified up- or downwards according to the needs, I went up to 420 mg per day…
There is also a special form of Mestinon: Timespan (180 mg) which has a delayed action and which allows you to spend a whole night without problem.
Mestinon might not be effective for ocular MG, so talk to your neuro about how you feel and describe the evolution of your symptoms throughout the day and the relationship with the medication.
This will allow him to adjust your treatment.
Maurice.

Hello! How are you today? I say today, cuz' this darn disease is NEVER predictable! Things are great here! My neuro reduced my steroids to 15 mgs. a day - yippee! I was up to 80 mgs. a day a few months ago and it drove me stark raving mad! I was manic, waaaaaay manic and ate everthing in sight - I"m not kidding, I was prolly up to 5000 calories a day. Fortunately, I only gained 16 lbs overall, but it's still a very drastic change.

Mestinon never made me drool, though my neuro warned against it when I started on it. It made me feel great, but I still had my crisis after taking it and steroids were the only way to keep my body from shutting down literally - my antibody count was @ 600 when I was admitted to the ICU - off the charts, but Dr. Ibrahim TRULY saved my life - Ok, I have a slight, totally harmless crush on my neuro - hero worship I guess!

I am so sorry to hear you are going through this. It will get better!

So, you're a musician? I would love to be so talented! Karaoke is about as "musical" as I get. We are going out this Friday. My hubby is so excited, b/c I really haven't left my house except to work of go to the doctor. People are always so shocked when they see the "new" me.........That is pretty depressing. Iknow people mean well, but they don't seem to realize how hurtful when they make comments about my weight, though I can now swallow, eat and breathe - always a GOOD thing!

Let me know how you are when you get a chance!

Hang on there!
Erin

Mestinon can be very, very tricky. Sometimes it takes awhile to get your dosage on target. I'm on pretty high doses of mestinon, and it took awhile to get it right. I hate that I'm on such high doses, but it does help.

Talked to the doc today. He says I can switch to the lower dose four times a day(rather than the timespan) if I want to, but thinks I should stick with the one I'm taking and deal with the drooling. Tonight has been really great! I haven't had a single problem, with the exception of the ever present double vision (but even that wasn't even bad enough to use the patch).

I read somewhere that surgery can be a problem for MG patients. I wonder if my surgery in July was what made me start to have symptoms? Interesting. I thought at that time that the double vision was being caused by the pain meds I was on for a few weeks post surgery, which is why I waited so long so see a doctor.

Redtail - I see you're from Australia. I was supposed to tour there this summer but I had to have back surgery in July so I couldn't do it. I LOVE Australia - the wildlife is so wonderful. I can't wait to get back there next year.

Erin - your karaoke comment make me giggle, thanks for that! Yeah, steroids are brutal. I can't believe anyone would comment on weight gain. How very rude. I gained a few pounds from steroids last April and was a raging nightmare to be around. I too ate everything in sight!

Neutro- thanks so much for your sound advice. I did tell the doc everything and it was very reassuring to hear that I wasn't overdosing or anything scary.

GaBelle - nice to meet you and thank you so much for taking the time to write. I hope the mestinon ends up working out for me.

Goodnight all. I'm in the studio tomorrow so let's hope I have a symptom free day!


K

You know, I never had double vison until right before I became really sick! Again, EVERYONE has different problems - min started with a nasal sounding voice and extreme fatigue, then after I became really sick with some sort of "bug", the double vision started - I had no idea my eyes were actually rolling around in my head @ the time - people thought I was on something, when in reality my eyes were just too weak to stay focused for more than a few seconds....not fun! Again, some people just have the eye, swallowing problems, and others (like me) get the full on disease, so hopefully you will only have eye problems, not fun, but definitely better than breathing, swallowing problems, etc........

MG patients usually have problems with the anasthesia - that's why it's so important to make sure that your docs know you have it - that way they can keep you intubated until you can fully breathe on your own. I awoke from my surgery to have that horrible tub e down my throat and fought tooth and nail to breathe on my own - they kept telling me not to fight it, but it's just so darn scary having that thing stuck down your throat. MY brilliant neuro also made sure I had 5 days of IV IG to insure I would be strong enough to handle the surgery (my thymctomy), and it went off without a hitch - painful, but (hopefully) successful......... I do know that my anitbodies were down before I left the hospital, so that's a step in the right direction..........

I've read that a serius illness can make make MG worse, or even cause a crisis - so maybe that's what caused your problems to come to a head - but unfortunately, since there is no known "cause" or "cure", we may never know........What options has your doc discussed with you? Are they talking surgery? Cellcept?

Let me know how you are doing when you get some time

Take care!
Erin