Yep "flakey" is the right word!! Sometimes it's better to laugh at yourself than cry. And I do a lot of that. Here it is 4am and I'm at the keyboard. This Pred will not let me sleep, what a nightmare.
Mike

Teresa, thanks so much for your input. I have had a very hard time dealing with these two autoimmune illnesses. First is that no one has ever heard of them or what the symptoms are. I still have to explain over and over to my sister-in-law about them mostly because she and my brother lived out of state while I was first diagnosed while my sister and best friend were at the hospital seeing for themselves what I was going through. They understand what the symptoms do to me physically.

I am having a very hard time coming to terms with the loss of my freedom and independence. It is like I have died and come back as a person that I really don't like very much. I am so afraid that I will fall again since I've already fallen about 11 times, hit my head on hard surfaces 5 times, cracked my clavical and broke my right shoulder. What will happen if I fall again and break a hip? I've become a prisoner in my home which in some ways isn't too bad since we have four cats and a dog so I have lots of company (although most of the time they are asleep!). I am experiencing so many feelings (fear, anger, guilt, frustration) that at times it's overwhelming. I know growing up my mother always said that I was either very high or very low, and my sister reminded me of that during the holidays. Well for the past two plus years I've been very low.

The person that I am going to see is probably more than just a social worker because she also deals with ALS patients (which is my neurologists specialty). I just don't know for sure her background.

We'll see if this new path helps. Thanks again for your support.

Southern Bell

I just wanted to add my opinions on a few things. After reading all of your posts I can't remember who posted what but I'm replying to a few people.
First off... Keep up w the social security! They are asses and I ended up in court to get mine. It may be wrong, but because the medical profession doesn't understand our illness, it's better to downplay your good days and moments, and play up the bad. In my opinion if they hear you can possibly walk for a half hour they think your ok. They can't understand the consequences we go thru for each bit of normal activity. Get a lawyer! They will take their fee out of your winnings and they handle everything!

As far as the mood and depression symptoms go... I was actually demanded by the judge who approved my SS to see a psychologist because I was bawling like a baby during my entire court appearance. I've been diagnosed 2.5 years and I've become so much of a hermit, I don't talk to old friends, I never tell people how much my life has changed so sitting in a room in front of 4 people, telling them details of how different my life is, was devastating! On top of that the "medical expert" told the judge that MG is relatively easy to manage and with the heavy treatments that I'm on and the pain I experience every he thought there might be a "psychological" element to why I'm not getting better!
Then my new gp said that because I have depression pain and MG , that they feed eachother and creat a vicious cycle that I can't get out of to get better! Thankfully my new Nuero doesn't believe any of it and assured me that with or without depression my MG is what it is and isn't affected by my sadness.
On another note , I recently tried to switch my depression meds from Prozac to welbutrin, to try and boost my energy and lethargy level. During the switch I had a major meltdown and became severely agitated, irritable, basically psychotic! I went to a psychiatrist cuz my GP is a quack!, and he diagnosed me with bi-polar. Looking back it makes so much sense. I didn't realize that the mania side of bipolar can be irritability and your mood shifts can happen over weeks. Since taking meds for it I am much happier and still as weak! So even tho we get sadder and more despondent when weaker, doesn't mean our saddness is making us weak!

And to the people still suffering with the grief of your diagnosis... It really is like mourning a death. The death of the life you once lived and the person you once were! I still mourn sometimes but like many have said, I am very well supported so it makes my time easier. Honestly I'm not sure it ever gets easier to deal with even tho we've all "adjusted" our lives so much.

As for my pain, my Gp made me feel like a drug addict also. 2 of my refills were stolen and fraudulently filled, Which she knew about. We filed police reports, viewed the camera footage. And because I've filled my prescription 5-6 days early... She thinks I'm doing something bad. It's a much longer story and now I'm too tired, but she's an idiot and if I wanted more drugs I would see the pain specialist that I wanted from the beginning anyway. Nobody seems to care about why I'm in so much pain, they throw meds at me but give me a hassle when I need to refill them and there is so much miscommunication on her side. She's very judgmental and made me feel like crap every visit I've been to with her. Ok I'm ranting. Hope you all know your not alone and some of you can take comfort knowing we are in this together fighting every inch of the way. Hope this finds you well and strong!
Jess
P.S. Thanks to you all for being here to read and rant and share advice with!

Hello this is my first post. My fathe was diagnosed in January 2011 had the eyes not opening, after spending all day at the hospital and wearing him down he started to slur his words, shocking to see this happening. By the way I suggested that he may have myasthenia gravis, after testing him and admitting him to the hospital. Antibody test came back borderline positive? They kept him for a week and did 5 rounds of plasma exchange. Put him on mestinon 60 mg 4 times a day. Prednisone as well 20 mg. he was released.
Then a month or two later was back in the hospital and had 5 rounds of IVIG. Helped then released. Mind the whole time was very sick with diarrhea with the mestinon.
Then a few months later couldn't breath or hold his head up, talk, double vision ended up in Icu for a week then another week in the step down unit. More IVIG, breathing treatments etc. got some what better than released.
A little while long after visiting neuro doctor at the local VA hospital admitted him again. Gave him 5 or 6 plasma treatments, explaining that IVIG was causing water retention so would probably treat with plasma exchange every 3 weeks. Also increased prednisone to 40 mg day mestinon 3 times a day as that's all he can handle and a small dose of cell cept 2 times a day .
Well after going to see the neuro dr, in December she said they would do treatments as needed, he was doing better at this point, also he told the dr he cut down to 20 mg of prednisone continuing mestinon 3 times a day sometimes diarrhea also keep taking cellcept twice a day.
Ok hears the deal the dr. Thought he said he went to 20 mg prednisone every other day as was going to keep him on that but after cleared up that he was taking 20 every day, then said to do that?
He has now been out for like almost 4 months has cut down to 10 mg prednisone and occasionally takes the mestinon 2 times a day, seems to be doing pretty well eats good holds his head up everything seems to work, but drs. Don't want to reduce his meds. The reason I want him on less meds if possible is because he has sorosis of the liver, so less is best? Right!
To conclude started basic symptoms then went crash active, lost ALOT of muscle in neck arms etc. smaller ya know, is that normal? Now seems to be almost inactive????