Bout to go home
 

Tomorrow is my flight back to North Carolina, sorta anxious about it, because i assume there will be cancellations, and delays due to snow which wont help the MG.


But im taking it hour by hour:)

Lately, or every hour or so my eyelid, and eye spasms, which im not realy sure what that means, do any of you have that problem? I always have muscle spasms, i hate it. But it could be worse.

Why is the pred. not working on my eyelid? Im having a hard time keeping it open, and it sucks, and my breathing has gotten worse since ive been here, but not by alot.

Just confused to why after 3-4 weeks on the pred. why its not doing as much as people pray to.


Im having to take a nap everyday, and just overall really tired. Why is that?

The plasmapheresis isnt working as well as it did last time..


Hope you all had a great christmas! i did.


talk to you soon.

Hi Tyson,

well they eyes for me are always the first to go when I get worse, ie my eyelids close, or I start getting double vision. Its a good barometre of how I'm really doing.

It did take me an age to get back to being, well I can't say "normal", cos I never got there, but to normal for the new mg me. When I was first diagnosed, and before hand, it was not unusual for me to sleep up to 10 hours a night, and have a rest or 2 or 3during the day. Now I just have an afternoon lie down, so as to rest my body, so I don't get a sore neck/back. I think our bodies are working overtime, muscles overworking because other muscles are fatigued.
It really is learning to listen to your body, and do what it needs.
I still find it hard that I can't do as much, ie I came home at 8.30pm from myfamily gathering cos I was so tired. Today I am using 2 fingers to type, not touch typing like I always do, so today will be a day of watching dvd's and resting(I have to keep tlelling myself that, cos I just want to go out visiting!!)

I'm glad you had a great Christmas, I had a great day.

As for travelling, maybe when you get there, alert your airline of your problem, they may be able to help you, ie if you are tired and can't walk, may provide a wheelchair, yes I know that sounds awful, but it may just save some of your energy for other things, like breathing. I still find it hard to admit I need help.
Hope I havn't prattled on too much.
take care
Kate

Prednisone isn't an instant cure - wish it was!
 

Hi Tyson - glad you had a good holiday in Maine - I'm in the same boat as you - I've been on prednisone for double vision and general overall weakness for the last 6 weeks - the weakness is better, but it hasn't touched the dv yet. I don't know if you saw it, but I asked other people on this site with the same problem how long it took for the pred to kick in - got 3 replies - 2 months for one, 18 months for the second one and the 3rd one had pretty good results pretty quickly.

I hate this word, but patience is the key. Have you had any IVIG or only plasmapherisis? Are you on any immune suppresants yet? (Imuran, Cellcept, etc) It's all a big balancing act and sometimes we have to rebalance ourselves. I've had mg for 10 years now and every 2-3 years, I have what I call a "flare" where it gets worse and I have to rebalance everything again. I definitely have mg all the time but during a flare, it is definitely worse.

You probably need to go see your neuro when you get back home and see if there is anything else they can do.

Good luck!

Tyson,

Where in North Carolina are you landing? Charlotte is looking good as I just watched a live newscast from there. I hope your trip home is smooth. As for the Pred, again, talk to your Dr. seems to me that you are on a very high dosage and to much makes MG worse. You need to start slow and build up to see what works for you.

Keep us updated, please.

Hey Tyson,

Glad you had a nice Christmas and are on your way home. Be sure to set up your appts. with the doctors you need to see as soon as you can. Take care and keep us posted.;)

Hugs,
Pat

Bout to go home
 

Tyson,
I hope you enjoyed your trip and hopefully you can get home with no weather delays!!!

I also have the muscle twitches and spasms in my eyes. I am sure it is the Mestinon that is causing them and not the Pred. I think it is DesertFlower who also said she has the eye twitches and she is on Mestinon but no Pred
.
As for the Pred not helping your eye try and give it time. I know that is soooo hard to do!!! I think I told you that I had been on 40 mg every other day. That dose helped everything except the droopy eyelid and blurry vision in the mornings. My Neuro upped my dose to 60 mg every other day at my last visit about 2 weeks ago and today is the first day my eyelid hasn't drooped at all. My Neuro said he considers 40 mg a low dose for MG so maybe your Dr. will decide to up yours too if you don't see improvement soon. It is really strange because up until now even when my eye is mostly open it still felt heavy. Today my eye feels totally normal!!! I will tell you that upping the dose has caused me more side effects than I had before. I am having alot of stomach problems and have had to start taking Zantac daily. I am also starting to retain water. I have only gained a couple of pounds but my hands are swollen more and I am definitely noticing it in my hips. Lucky for you you're a guy and hopefully the hips won't be a problem for you. The holidays have made it even harder to watch my weight. I plan to lower my salt intake and now that the goodies are gone I am going to get serious about getting these pounds back off!!!

Don't stress over taking naps. Just rest when you need to. I stil have days where all I want to do is sleep. Insomnia was really bad for a while but that has improved too. Even on my good days I am wiped out by this time of night. I have a booked solid week at work and am really stressing about whether I have taken on more than I should have. I am so scared I will be paying for this next week. Have a safe trip home.
Kendra

I will give you my experience you must speak to your neuro
 

the combination of mestinon and pred are designed to eleminate the effect of muscle weakness and failure on repeatability.
my neuro put me on a regime he new worked with other patients in the past.
I left the hospital on 60mgs per 24hrs of pred and 3*60mg per day of mestinon .
240mg day of drugs.
The pred did not kick in for 6 to 7 weeks.
therefore the only thing controlling the mg was mestinon at 180mg per day not 240mg of drugs needed.
I dont know the exact effect of pred relative to mestinon but say for talks sake it is 1mg pred is equivalent to 10mg mestinon then my initial dose equates to 60mg pred (600mg mestinon)and 180mg mestinon=total 780mg mestinon equivalent.
With the pred not working for 6-7 weeks during this time the only thing working is mestinon.
I had to increase my mestinon to 60mg every four hours =360mg mestinon
was not enough.
had to increase it to 120mg every four hours =720 mg .
better but not enough.
increased to 120mg every 3hours =8*120 960mg every 24 hrs
this proved too much giving eye and muscle twitch which are signs of overdose.
reduced it back to 7 *120mg =840mg mestinon no twitch no muscle spasms
good strenght all round and good repeatabillity ,no right eye pitosis.
now the pred kicks in and starts to work equivalent to 600mg mestinon(on my scale)
now we have mestinon equivalent 600(60mg pred)and 840mg mestinon total1440mg mestinon equivalent.
massive overdose relative to 780 required on leaving hospital.
THESE DRUGS CAUSE WEAKNESS IN OVERDOSE

Tyson, Sometimes people take longer to get better on Pred. And effects of plasmapheresis may not last long. And, like Patrick said, you do have the possibility of being overdosed on meds.

They often do plasma to see if you get better or stay the same. That way they know if they need to up meds or try something different. Or give it some time to work!

I hope you will call your neuro on Monday. Take care.

Annie