I'm getting really tired of everything I have to do for these diseases and of the side effects of these medicines.

When I get up in the morning, I'm stiff as a bored and its painful to move. It takes a couple hours to get ready in the morning because I can't move and moving also makes me tired to I have to sit a rest. Only whenever my parents see me sitting down, they get angry because its going to make me later for work. Everything I've tried seems to give false hope as it wears off in a month or two. I was on a large dose of Valium, but the effect wore off and the side effects stuck around which wasn't a good combination. I just switched to klonopin, which seems to be working for now, but I don't want to get my hopes up. Next week I could get used to it.

Also, everything at work seems designed to make it hard for ADA. They have a very short row of handicap spaces that they allow van pools to park in (it seems like a healthy person could drive the van to normal spot!). So if you don't get to work by 6:30 or so you don't get one of those. When I originally couldn't walk it took me six month to get a numbered space.

Now my problem is that if I don't get there right on time, people figure you aren't coming in and take your spot. When this happens, you're SOL and have to park at the back of the lot and walk a quarter mile. I've gone in before and explained that I'm extremely handicapped and someones in my spot and I'm told to just drive around until I find something that they have no spots for emergency situations like this and they aren't allowed to tow illegally parked cars.

I've tried working issues through ADA, but the ADA officer is either never at his desk or doesn't return your call/email. The first time I met him was in a meeting to discuss how my illness was affecting my work performance--and this was after months of trying to meet with him to get accommodations.

I'm just tired of everything I'm having to go through. My doctor wants me to do the Rituxan treatments again starting this week. I'm not sure how my boss will take it since he recently told me I've used up too much advanced sick on my surgery and recovery and he doesn't want me taking any more.

I wish i had some words of wisdom to share but i dont. I do however know how you feel - this is the such an incredibly frustating illness. Since i started receiving teatment i have tried to maintain a positive attitude whenever i get frustrated by reminding myself how things could be worse and for the most part it works however recently i realized that perhaps due to the unique presentation of our condition, "worse" medical conditions are actually easier to deal with in that then others are more willing/tolerant to helpl us. For example, when i was paralyzed from my neck down for many months, i didnt have to deal with anything...my family had to deal with my life, i only had to (only could) lay in a hospital bed and try to get better. It is really really hard getting up everyday and dealing with this.

I dont know what the answer for us is but i hope perhaps by us sharing, identifying our issues we might be able to improve things for ourselves and others in similar situation. If nothing else, it is nice to know i am not alone in the way i feel. I am not a spiritual person but I have to think there must be a reason for this and whther or not that is true id like to think somehow i can make lemonade out of these rotten lemons i have been given!

Hang in there ...i am sending good thoughts your way that thinga get better for you

Stephanie

I completely understand. I'm tired of being tired. I can't function without the medications but the medications are harming my body in other ways.

I am now in constant pain due to the osteoporosis caused by years of prednisone. I've been diagnosed with compression fractures in two vertebrae because of the osteoporosis. I'm scared to death of what might cause another bone fracture. My last blood test showed an elevation in my liver count and I've had another test to see if any change has happened. Haven't gotten the results yet. What's next?

We both have two very serious, rare illnesses and are at the mercy of doctors decisions, test results, medications that cause other problems, people who don't understand (or won't understand) what we are going through.

I'm so scared that I've lost control of my life and I have to rely on others to control what I should do to exist.

I've said before to hang in there but I truly know how hard that is to do.

Becky
Southern Bell

All of us can relate to the frustration of being tired and alone with our illness.

It is impossible to expect anyone without MG to understand. With the support of each other we can manage the disease.

I feel fortunate at the present time because I have been able to manage MG with small doses of prednisone and mestinon.

I am lucky that I don't have to deal with stress (the greatest enemy of MG}

You mention the problem with osteoporosis. 1. How long have you been on prednisone? 2. What dosages of prednisone have you been on ?

I have been on daily dosages of prednisone since January 2010. My main symptom of MG is ocular and dealing with stress. My eyes will totally lock in one place and I can't move them left or right. This leads to double vision and incredible nausea. The first time this happened was right after my thymectomy (May 2009) while I was in the hospital and they used prednisone to clear the problem then. Once it did they worked me off.

The second time (Dec 2009) my useless (now X-neuro) tried two rounds of IVIG which did nothing so I ended up back in the hospital. He put me on prednisone and worked me up to 60 mg per day. In about four days my eyes corrected themselves but he said that I would have to stay on prednisone as a maintenance. I have been slowly working down the 60 mg dosage and thanks to a new neuro I am now taking 10 mg every other day. I want to stop taking it period and see if my eyes will stay normal. That is my plan and I am going to try to make it happen.

I knew osteoporosis would be a possibility but I truly had no idea how soon it would appear. My x-neuro should have tried to work my dosage down at a faster rate but I believe he could care less about the outcome which is one of many reasons he is my X-neuro. I mistakenly thought he was doing the best thing for me. Wrong!

Sorry for such a long explanation. Anyone who has read my post know that I'm not a person of few words.

Becky
Southern Bell

Becky

How long were you on high doses and when did you start to taper down?

Now having benefit of hindsight any opinion as to what could have been done differently, other than trying to get you off the prednisone sooner?

Do you take something instead of immuno? Did you try and couldnt?

Asking because i am feeling as if i am where yu were in 2009 and perhaps could avoid some of issues you have

Thanks

steph

Steph,

They started very slowly reducing the dosage in Feb 2010 and by Dec 2011 it was down to 20/10 (20 one day, 10 the next). Then my husband noticed that my left eye was starting to droop significantly. At that time the dosage was increased to 25/15 and it's taken about 10 months to reduce the dosage to 10 mg every other day.

There has been so much going on with my meds because I also have Stiff Person Syndome along with MG. At some point during 2010 I was placed on Imuran which is suppose to help subpress my immune system because of the SPS and work along with the prednisone enabling me to take less prednisone than normal. I was also put on Valium because of the SPS symptoms.

I can't tell you how tired I am of drugs. But I have no choice. I hope you can take the lowest dosage for the shortest period of time as possible. Hopefully with just having MG that will be possible. Keep us updated on your progress.

I hope this helps but again I'm dealing with two rare autoimmune diseases and so my drugs and dosages are not normal to say the least.

Becky

BackwardPawn

Boy can I relate to your title "Tired Literally and Figuratively".

Not sure what to tell you - I don't know your entire circumstances.

I do know that I had to deal with an ADA Manager - who was useless - and an HR Manager who was clueless.

Thank God for a Fabulous Boss who saw my illness hit me fast and furious, supported me for 5 years until the MG progressed to moderate - severe generalized symptoms (from initially only ocular MG).

I finally had to go on short term disability and then SSDI. I was barely dragging myself into work (I worked in a high paced Type A "Think Tank" environment). After work, I was barely able to drive home, often skipped dinner, and fell asleep on my couch as soon as I walked into my home. Slept the entire week-end. Not a fun life.

Do you have the option of taking short-term disability? This might be different from your regular sick time. This is something you might investigate BEFORE you ask your boss about it.

You are sounding very overwhelmed by the many obstacles you are currently facing - these are causing much stress- which exacerbates myasthenia gravis. Perhaps some down-time (disability time) is needed to help your body adjust and adapt to the many changes one needs to make with myasthenia gravis.

(((((hugggggs)))))) Many of us have been where you are.

SoftTalkerSue

p.s. I am not saying that a short term disability "time out" will automatically lead to SSDI. Many can return to work after a short leave time.

I'm so sorry you have to deal with SPS and MG. No, it's not easy and there are days that really suck. No amount of positive thinking will help on those days.

Besides pulling out all of the coping tools like music, laughter or whatever else makes you happy, you might need to talk to someone like a psychologist about this too. Or someone professional who can teach meditation.

I can't stand Prednisone but, like I posted awhile ago for you SPS guys, it has been shown to be helpful with SPS. They really do wonder if it's autoimmune related.

No one deserves this kind of life and it is a constant challenge, whether you just have MG or MG and other health issues.

I'm at a loss too because I have a hard enough time dealing with my own issues. Scream, cry, throw soft little balls (one of my favorites) at a wall or whatever it takes to get out the frustration.

There just aren't enough geniuses out there working on ALL diseases. I wish there were.

I'm so sorry you're having a really tough time. I really wish I had an answer to that damn SPS problem.


Annie

I guess I have a bit of good news and bad news. I went back to 35mg of Prednisone...my neuro wanted me to alternate 30/35 in order to start tapering off and I can get around a little better. Thats the good news.

Bad news is I saw the opthemologist who said my eyes are too prominent and wants me to get my thyroid checked. Then my optometrist took both new pair of glasses back since everything was blury and I wasn't getting used to them. Everything measured right, but now I have no prism so I'm back to using tape. One step forward, two steps back....