Hi there,
All of the sudden -really, I can't figure out what triggered it- all my symptoms have become worse. Once again, it hit me hard and it makes me a bit angry and sad.

I was finally able to do stuff around the house. Little, silly stuff yes, but I was still very proud and happy I was able to do simple things like emptying the dishwasher or even sing a long with a whole song! Three minutes long! And when the air was nice outside, I went outside and took a deep breath. I really did appreciate how good it felt to be able to breath. Like a normal person. It felt sooooo good, I believe I got many happy hormones released in my body when I took that breath.

But a few weeks now I'm, once again, bedridden and I'm too weak to talk, hold my own book, sit up straight, walk, etcetera.
My head however is not weak, and wants to do stuff. I have -yes, once again-this conflict in my head which is a pain. I do not want to lie down all day anymore. Not when I can be up and doing stuff! I feel terribly locked up. But I want to fight!

My most disabling problem is te shortness of breath. I truly HATE it. So I have been doing some searching. And found some interesting stuff I haven't tried yet (ventolin f.e.) so I'm standing my ground (hehe, well, matter of speaking) and asked my family to help me get those medicine and try them out one at the time.

I know very little about your condition but read your post and just wanted to say "Stay Strong and Keep On With Those Thoughts".

I am so glad you had some time to be 'normal'....aren't those days absolutely wonderful ? !

I wish you many more of those days for this new year

Debi from Georgia

The ups and down or MG are very frustrating. If you are having breathing issues, please call your neuro. He should be able to provide some change in meds to get you feeling better.

kathie

Hi, thanks both.
Unfortunatly Kathy, I've tried all the medicine they normally use for MG. If I call my neurologist there's a big chance he wants to admit me and well, all they can do is give me a whole lot of prednisone which I refuse to take in a higher dosage than I take now. I've had this many times and I just have to wait until it gets better.

But because i spent all my time sleeping or reading on the internet, I've found some interesting information about medicine Ive never heard of. And I'll discuss them with my doc to try them.

I have Lems, but it behaves very much like mg, and I went downhill a lot too. I was on plasmapheresis three times a week and my main issues were shortness of breath and swallowing. My swallowing got so bad that I had to have a feeding tube placed. Since I was going down, my doc decided to try me on a course of rituxan in December and I am happy to report that I am much better. The shortness of breath is gone, swallowing is not perfect but much, much better. I am able to stand and walk around much longer than before and piddle around the house as I like to do. I am not perfect, but I would say 75% improvement and I feel like, with some rehab I will get stronger yet.
I truly hope you can the right treatment so you can get back to doing what you enjoy.

When my breathing is really bad, I do better in a recliner than bed. It is very hard to breathe lying down. The recliner tilted back allows me to sleep and breathe better. I also keep the house temp cold - 63 degrees. it is easier to breathe when the air is cooler. ALso, check with your dr to see if you need a cpap to support your breathing while you sleep. Eating gives me shortness of breath, so I save my strength by eating semi-solid foods - oatmeal, soup, mashed potatoes, pudding. Eating & chewing always gives me shortness of breath, so I only eat a little at a time and take breaks in between.

I hope this helps
kathie

Thanks both!
Yeah, I do not lay flat, that's just asking for a quick ride to the ER.

I've heard of rituxan and we (doc & I ) have discussed it multiple times. I haven't tried it yet, but maybe I will!

I am new here and I have not been diagnosed with mg. My blood work is fine but my neuro wants me to go to another neuro for and have muscle biopsy for mg. I can relate to how you feel because I have the same symptoms and I have had some bad periods but did not last long but they were awful right now I am just having muscle spasm and weak legs. I do have periods where I can not eat etc. I had days where I wanted to read but could not hold my book etc. so I can relate to how you feel. when you come out of that stage and you can move like a normal person, it is the best feeling. I realized during the rough period how much I took for granted, like being able to walk or hold my book or even clean my house. I hope that you feel better soon.