Hi, All! I will try to continue. Sorry about the first post. Blood work came back positive for Mg. Nuro. started me on 60mg.x4 mestinon, got so weak I could hardly get out of bed, had trouble breathing, feeling like a large weight on my chest all the time.I Also had a feeling of chocking all the time. Nuro said I was entering crisis, had 5 days of ivig at home. Did not get the expected results with ivig, still very weak and vision has not improved. I started on prednisone, going up to 80mg a day,also nuro mentioned plasma exchange if I continue to have breathing or chocking problems. Is there any light at the end of the tunnel?

Gene, So sorry for all you are going through. It took awhile for things to get better for me even with the meds.,when I was diagnosed, my thymectomy is the thing that helped my breathing. I noticed a difference about two weeks after having it.
Mary

Hi Gene,

there is light at the end of the tunnel, even if it does flicker occaisionally.

When I look back on how bad I was, Iam much better now. Im not back to my normal life, but much better. I have learnt (mostly) how to pace myself, this helps you not to over do things and therefor exhaust yourself.
Kate

I hope your neuro has given you some advise concerning your food habits when taking high dose of pred: reduce salt, lipids and sugar (risk of weight gain and diabetis), take plenty of calcium (risk of osteoporosis) and potassium (pred depletes potassium in blood which could cause heart problems). Be also followed regularly for your eyes due to risk of cataract and glaucoma…
I don't want to frighten you but you need to be informed, I went through all this (75 mg/d Pred, i.e. 1 mg/kg of weight) without too much problem except cataract and glaucoma but I had cataract in one eye before MG and my father had both problems…
Take care,
Maurice.

Gene,
You're really being hit hard! What a rude introduction, I'm so sorry.

It does get better, but you will have to REALLY take it easy until you get through this difficult period. Don't expect the meds to pull you out real quickly if the IVIG has had a few days and still isn't working - it didn't do anything for me either.

You have an official excuse to do some serious , and I hope you'll take full advantage of it. Do you have someone at home with you? Let them wait on you - even short walks through the house were too much for me when I was in that state.

Once the right meds and dosages are set for you, you'll start to feel better. I know it's sooo scary.

Take it easy and . Post when you're up to it or if you need some info. There are so many here with all different degrees of the disease so I'm sure we'll be able to help you through this!

Wow! You have been too much! I am sorry to hear the IV IG didn't work, but I bet the plasma exchange will! Not fun but EFFECTIVE!

80 mgs of pred should also do the trick! Oh, what a feeling! I had more energy than I knew what to do with!

I think the 1st year back is always the hardest............trying to get everything back to normal, meds changing all the time, the "hurry up and wait" for the drs, all of it! I am on Paxil for my depression right now - my nurses highly recommended it when I went in for my 2nd exchange - it WORKS wonders!

THERE IS A LIGHT @ THE END OF THE TUNNEL! IT WILL GET BETTER!
Once you are regulated, you will feel great again!

I pray alot, and will include you in my prayers!

Hang in there, honey!
Erin

Thanks Mary,Kate,Maurice,Becky, Erin for all your kind words of encouragement. I have had some improvement in the severe weakness since starting the pred but my eyes are still the same..... darn double vision. I will up my pred to 80mg.a day tomorrow,having hot hands and feet ,is this side effect from pred? Also waking up at night with a chocking / tight feeling in my chest,should I be concerned or is this the pred?This is an awesome site.... I pray blessings on each of you as we face this disease together... Later

Hello GeneZ, looks like we live in the same area. Yes there is a light at the end, I was in a medication free remission for 17 years. As I read everyones posts I realize how lucky I am, although my MG has returned it seems I am in great shape compared to everyone else. We all have bad days but remember there will be good days too, once your body and mind adjust to your illness and medications the good days will become more and more. Good luck and hope to see you posting more.

Hi Gene,

As everyone has said, there is definitly a light at the end of the tunnel. It may take a while for you to see it with all your are going through right now...but you will. I had double vision every day for months at a time for years which developed into additional problems...but they are fine now after my Tymectomy and with mestinon. I don't want to scare you, I'm just concerend. Has your neuro mentioned sending you to a neuro opthamologist? I think it's very important that you stay on top of your vision problems. You may want to mention that to your neuro and ask him/her to refer you to one. After 10 years of having MG, I'm at stage where I consider myself about as 'nomal' as I'm going to get, which is wonderful, but I still see my neuro & neuro opthamologist every 6 months. Also, plasma exchange worked wonders for me. Take care, get lots of rest and keep us posted on how you're doing. Just remember, it all gets better with time.

Pat

Hi Gene! 80 mgs of Pred - dang! You should feel that pretty soon! I actually liked the feeling of 80 - gave me energy not to be believed!

It also gave me wicked panic attacks - chest tightening, hard to breathe, chest pounding - so much so that I called the hosp several times just in case.....
Xanax has helped with the panic attacks, though I do still occasionally have them...nothing like b/4 though!

I also have hot hands and feet - so much so that the last guy that admitted me to the hosp shook my hand and his hands were so cool that I grabbed both on them in mine and held on - now he thinks I have a crush on him and finds me whenever I'm in the hosp - LOL!

I sweat all of the time as well. All night long. Have my therm. set at between 65-70 with 4 fans on me and wake up drenched every morning - every morning.........I keep an ice bag handy to help with the heat issues....

Did you ask about the plasma exchange? Like I said - it sux but is usually pretty effective........

You do need to talk to your dr about the chest pains - don't ever assume they are the meds.......better safe than sorry.....

There is a light @ the end of the tunnel and you WILL reach it! We all will!

Big hugs!
Erin