Not read your message yet as in a hurry to get ready for work right now, but will do tonight.

A little tip for future posts - this is fine, but it might be easier to read if you use a few extra carriage returns.

Especially if people are having vision problems, spreading the text out just meakes it easier to digest.

I'm just guessing here, but someone having a bad eye day might see a post like this and just not have the ability to focus on it all and read it.

Hope you're doing ok.

Lynsey.

I did read your post earlier but as you have so many more problems than I, I had not attempted to advise where I know nothing.

Something we do have in common is the cataract surgery. I had it a couple of years ago and am thrilled with the results as I was extremely near-sighted and had the lenses implanted for correction. It was not stressful at all for me as I have a wonderful doctor and trusted him.

Another thing...you said that you had tried the steroids for three days and could not sleep. I had the same experience for the first few days but I am finding that I am adjusting to it. I am on 20mg one day and 10mg alternating days and each time I go up on the prednisone, I have sleepless days but I adjust and the benefits far exceed the lost sleep for me. Also, my regular doctor has suggested a healthy diet to take care of some of the problems a steroid medication can cause...which I am following religiously!

Just wanted you to know that I am thinking of you and hoping that you can get the help you need.

Mr. Finney why would I not see a reponse? I only have the responses that came on since my newest post lastnite about no answers. The only responses I see are LynseyH and Gail37.

I am not looking for Doctor advice. I have belonged to a Sjogrens borard for a few months and find people thoughts and experinces very comforting in the misdt of a disease that even doctors have limited understanding about. We seem to know it best and I have great respect for all your experiences.

Good news today: I see the new muscle neuro on 8-5 they didnt promise this before as she has alot others to deal with too. And my medical leave can be 60 days. This gives me time to get my bearings here a bit and talk to this new doc about treatment options.

I think this is just case of you having a lot of questions and no one here having any satisfactory answers... This is such a varied disease that not everyone will be experiencing what you are.

Good news about the quick appointment. Perhaps they can get you started on some immune-suppresive therapies? I know you said you had difficulties with steroids, but in my case they took me from unable to speak or eat at all to being 100% fine within a few months. I didn't even need mestinon after a while!

I was totally hyper the first few days, but i now barely notice any effects like that now.

Perhaps it's worth sticking with them for a few weeks?

You probably already know this as it is a well known fact, but just a thought to mention, make sure you take the steroids early in the day, you shouldn't take the steroids late in the day, this will cause sleeping problems. Alternate day steroids at 20/10mg is an acceptable dose and shouldn't be causing too many problems, I was myself started on very high doses of 80mg daily and then was on a reducing regime. The benefits of the steroids do outweigh the disadvantages. As always patience is a virtue, easier said than done when you want immediate results, but it does take a little time to get there.
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South Wales
UK

I had the sleeping problems from day one, but thanks to you and the other posters here, I made sure I took the Prednisone first thing in the morning. I have found that I do adjust after a few days. That may change as I go on higher doses. My doctor and yours evidently go about dosage in the opposite directions! Thank you for taking the time to see if I was aware of this!

My main purpose in mentioning the sleep problem was in hopes of reassuring Kathy that perhaps she could be passing up her best hope of relief from her problems by discounting the steroids because of sleep issues. And I KNOW sleep is a big issue with all of us.

Kathy, I am glad you were able to get an earlier appointment! Every day makes a difference when you are desperate! My appointments are big deals for me as I am 5 hours away and that means 10 hours of travel each trip. I hope you are able to resolve the medication issue. Sometimes it takes a very long time to find the right medication and lots longer to find the correct dosage. Be patient...I know thats hard...but keep tryin.

Also, Kathy, I have been reading on this forum a long time before I joined and I have never run across a more caring group of people. They may not be able to help with anything more that moral support but they will give that.

Good luck! Let us know how the appointment goes.

..At that time I'd be 30 min away from needing my mestinon and trying to drive with my good eye. Bad idea.

I'd tried that the nite before to get to my therapists and had to take back roads home to be safe.
Oh...other factors for me and steroids:

*significant family diabetes history

*already into ostoepenia due to my struggles with chronic viatmin D deficincy

*depression history tho I've been good for a few years.
*some liver issues that are being monitored.

I am all for what works tho what you don't know is that I have ahistory of very poor drug toleration ever since being on a 21 day course of the fairly toxic drug valcyte.

( had supposedly CMV tho I only got worse on it). I admit drugs scare me.
There I said it. The drug Paxil stole years of my life causing in me all the symptoms it is supposed to handle. I became so phobic I had no life.
I HAD to go off it after the valcyte and voila! I was ME again. This was just in 2005 so I am stll raw from this.

I know just how you feel about the drugs. I too am super sensitive and almost did not start treatment but was too miserable with my messed up eyes.

My neuro ordered the glucose tolerance test and the bone density scan before he would let me take immune suppressants. I have been hypoglycemic for years and also into osteopenia for several years. He started me on Fosamax along with the Prednisone and my GP put me on a low carb, (only complex carbs) high protein diet to strictly control the glucose problems I have. Wonder of wonders, the fosamax hasn't bothered me and I understand that some people have problems with it.

I am hypothyroid, also have lupus and cardiomyophy and have to take the beta blocker, Coreg, which is bad for MG but I have no choice. I am trying to reduce any risk factors I can that might develope with MG therapy but have decided that I MUST have relief from the eye problems. The weakness I have is not as severe as yours.

I thought it unusual that the hot shower caused such a problem for you. I have had to cut back the temperature of my showers radically in the last months and I previously loved hot showers!

If I can make a suggestion, before your appointment, try to research all the medications so you will be aware of what they will do and how long you will have to wait for results. There is limited choice and sometimes we won't respond to what is available and for some there will be adverse reactions. Tell your doctor what concerns you and maybe he can offer ways to circumvent the problems. Sometimes we are not ready to make a decision and have to wait for another appointment so it will help to know your choices. Anyway, stay positive and trust that the appointment will solve some problems for you!