Hey Allen,

You never have to apologize for ranting...most of us have on occasion. With this disease still being considered rare, it's not easy to meet someone with MG. I don't know anyone in my area who has it. The nearest support group is 60 miles away in a rather large city. I've had it for going on 11 years and this is the first support group I've joined. I don't know how I managed so long without all the wonderful people here. I don't feel so isolated anymore and everyone here knows exactly what you are going through. As you know, those that don't have it, can't possibly understand. I know what you mean about having a hard time accepting it at your age. I'm 57 now, and I learned to accept it quite a few years ago and you will too. It just takes a little time. I wish you all the best and hope your neuro is right and you continue to have only ocular...many have. Take care and again, welcome!

Hugs
Pat

something I heard that I found incredible, the odds of this were probably 20 million to one-
I came home from work a few weeks ago, my daughters roomate from college was over for the weekend, she lives in the Buffalo are of NY state.
While my daughter mentioned my eye problems to her roomate, her roomate sat up and said, my father just retired because of his problems with Myasthenia.

I could not believe my ears.

If hes on this forum, Im Marissa's dad, please say hello.(I know its weird in all these years we never met)

Hi Allen, I'm so sorry about you having Myasthenia. Is mestinon the only med you're on right now for it? My eyes do the same thing, but have improved much since being on treatment. Mestinon will cause sweating, and so will many of the other meds for mg. It's par for the course, and very annoying!!! So is having GI problems.
Many people have a cocktail of meds that we have to take in order to control the diseases effects on our eyes, and body. And really, it only controls them to a certain point.
I too live in Western New York. I found the story of your daughter's friend very interesting. A couple years ago, our local news paper did an article on me, and from that article I received a phone call from a lady who lives right down the road from me who was battling MG. I was floored as well. The chances of that happening weren't so high. So, I went down to her house, and we chatted. All I could think of, wow, how weird is this, here we are two people with a very rare disease sitting and talking in the same room. It was so odd.
Ask as many questions as you wish.
Best of wishes
Lizzie

Your stuff is brilliant.

Yeap we've all joined a club none of us ever imagined we would be in and if you want to rant come and join us. We all have a rant if we need to. We do it here as people understand what the daily battle can be like and we know it wont be held against us!

They are a brilliant bunch on this site and very supportive.

As someone else said you have to take it a day at a time, when you are up to doing the woodworking you do it. My thing is cleaning although my mother would have never ever thought that it would be! I like a clean and tidy house. However I have been in a slow decline for a while and the cleaning has had to be put on the backburner. Someone said and I can't remember who, "you'll have to live with the dust bunnies" and yes they are right! I was horrified at first, but its true. I can clean myself into a collapse and hospitalisation or I can learn to turn a blind eye. Its taken me 2 years to get to this. Sure I will clean if someone comes around, but I can't do it everyday and if I do, do it I have to limit other things I enjoy. So its a balancing act! And sometimes you get it wrong!! LOL.

Take care
Rach

I thought I could just go about business, since I only suffer from the tired eyes.
I went to my first class at night on weds night 7-10 pm.
I had to drive in traffic about an hour.
by the time I got there, my eyes decided they have had enough.
I constantly remind myself Im lucky to only have ocular Mg and dont suffer like so many do. Having reminded myself, it didnt seem to help.
I got out of my truck and had problems focusing my eyes were so beat.
I took a quarter of a tablet, and sat in the truck for 20 minutes and cooled off.
I went upstairs, the eyes got a bit stronger, but driving home at 10 was not easy. I wouldnt tempt fate again.
Its incredible that the more I try to lead a normal life the more the Mg, no matter how mild I have it, seems to drag me down to a level that makes it difficult for me to do simple things.
I havent been to school in 35 years, I figured Id have a good time.
The instructor was under 30, and the students were all under 30, and when I broke out in a heavy sweat, typical when the mestinon kicks in, I noticed them all looking at me like I was some type of rabid animal.
I laughed, and explained to them, no, I dont need the ac turned up or a break, its just a medication that makes me perspire. (but they still gave me looks. I guess a guy with a faucet running down his face is peculiar, but now I laugh it off)
My wife has agreed she will drive me to any classes in the future, and read a book while she waits for me.
Compromises have to be made, Im lucky my wife and kids lend me any time I need from them.

Im just noting this experience, only because Im amazed how difficult life can be even with just very mild symptoms of this crappy disease.
I wish you all strong days, and hope you can function and be happy, and enjoy family and friends any time you want.

Allen, your carpentry is truly beautiful...I envy you being able to use your hands so well, keep it up....bet you could make some gorgeous fish tank stands, lol, I've always kept fish (10 tanks now)...& when I retired & moved to Tn from NJ, wanted to set up a real "fishroom" & keep both fresh & saltwater fish....well, not to be, have a few freshwater fish, but now with the Mg exacerbation can't take as good care of them as they require...my Mg is limbic, muscle weakness in arms & legs that I've had for yrs, just now diagnosed, so walking & doing anything with my horses & dogs, or even the house has become extremely difficult to say the least..& now my hands are in big trouble with carpal tunnel surgery (2nd time) & damaged nerves...it's peripheral neuropathy & there's not much to do for it...the pain has improved a little, but is really not tolerable (3 wks post-op today) & the drugs make one loopy, not helping much at all either....guess I'm just ranting too, cuz I'm so frustrated with this...wanted to start up a small veterinary clinic here, but now it looks impossible....& I still can't ride my horses, a goal that seems now unreachable cuz of this horrendous disease...& as others here will attest to, no one seems to understand our predicament cuz we don't look "physically challenged"..c'est la vie...

I do understand what you're going thru, but whatever you do, don't give up & keep doing what you love as long as possible...hope you can continue with school & get better....

Dottie

Im not quite sure even I understand the difficulties and challenges so many here face every day.
I can only imagine the feelings of frustration, and anger.
Its been 5 months since diagnosis, and Im still very angry Ive been struck with MG, and my case is relatively mild.
The people here are inspiring.

Hey Dottie,

I am so sorry for all you are going through. I understand only too well just how frustrating this wonderful disease can be. Do you know when you are going to start IVIG treatments? It sure helps so many here feel so much better & stronger, and I bet it will for you too. I'm pulling for you. Hope you have a nice day!

Hugs,
Pat

Hey Allen,

Hang in there, it will get better with time. Losing some of our independence is not an easy thing to accept. It sounds like you have a very supportive wife and that is so important. I hope you continue to go to your classes and do all the things you enjoy when you feel up to it. Did you tell your daughter's friend to tell her father about NeuroTalk? It would be nice for the two of you if he joined. Have a nice day.

Hugs,
Pat

Pat, my IVIG treatments start on the 3rd of August...will be a long week, have to drive 1+ hrs to Jackson to the hospital for the infusions....maybe later, if they help, the neuro doc will let me have them here nearer home, maybe, lol....sure do hope it helps...is there anything I should avoid when getting them, hopefully coffee is ok...boy do I miss that when they cut me off, lol...

Dottie .