Have an appointment at the Cleveland Clinic tomorrow! Hopeful that I get a diagnosis. Also have an appointment with another Cleveland Clinic Neurologist next month that has an office in Twinsburg, Ohio which would be a lot closer drive for me or if someone else has to take me. Seems like the other doctors don't believe how bad my symptoms are getting, or if I really have Myasthenia Gravis. With a diagnosis I'll at least know what I'll be facing. Have been testing my hand/arm strength with a hanging scale by holding in one hand & pulling with the other. In the morning I can pull up to 20-25 lbs., an hour later 10-12 lbs. then down to about 5 lbs. or less. That's after just sitting around doing nothing.

So sorry Bob that you are still in diagnosis limbo. Hopefully between the two specialist, you will get a diagnosis soon.

kathie

Thanks, hopeful they figure it out. The worse part is getting hassled from my employer. They want me to get a release for work, but it has to be with no restrictions or fill out FMLA papers again. I don't see them giving me a back to work release when I can barely walk, talk or use my hands. I wouldn't be able to climb the ladder to get in the Loader at work anyway, let alone drive it safely. The 1st Dr. put an estimated return to work date on the FMLA papers & an Undiagnosed condition. They said after the Cleveland Clinic appointment I have to have either a return to work or FMLA papers filled out again. The merry go-round keeps going 'round. Hopefully the Clinic will see how bad I really am and will help me out so I don't lose my medical benefits.

I am lucky that I have a desk job and use a computer all day. It allows me to be more functional longer. When I am bad, the hardest part is walking to meetings and the bathroom, and talking slowly so I don't slur my words and dribble. I am less productive than I was but not so that my employer has complained. They know I have difficulty walking, some days more than others. I use a lot of vacation and sick days but have been able to remain working. They know I have a medical condition and use all my personal time for doctors and test. And I take a lot of pills. Even when my arms get weak, I usually can use my hands to type slowly. They have not asked what is wrong and I have not told them. I think they think I have cancer since I had abdominal surgery last year and that is when all the MG symptoms got so bad. I think that makes them more tolerant of my situation. They probably think I am dying rather than have a chronic degenerative disease. People watch with intent as my feet drag and my eyes go weird. They often ask with great interest how I am doing.

Is it possible to transfer to a desk job at the company where you work now? You probably do not want to do anything drastic that might jeapordize you health benefits.

Unless something drastic happens, like remission, I know I will eventually end up on disability. I am trying to get myself in a financial situation where I can live on disability income.

Try to find out your rights and make a Plan B so that your employer is not stressing you out so much. I did that and I am able to relax more about my situation.

Best of luck and keep us posted.
kathie

My primary Dr. gave me slip not to drive heavy equipment & work sent me home saying I had to be 100% no restrictions, so they're not going to let me do light duty work, even though one of the truck drivers is doing light duty right now in the office on Workman's Comp. They pretty much make up & change the rules as they go.

Have an appointment with the EMG lab at the Cleveland Clinic 3/22/13 for EMG/Nerve Conduction studies & Repetitive Nerve Stimulation. The Neurologist there said my previous Neurologist couldn't have done a SFEMG on me because he said there's only a couple of places that can do that test. He's also going to test my arm & leg. I also notice my condition worsening somewhat lately. Have been having some trouble swallowing (especially hamburger, which I love) & choked a few times on my saliva. Also noticed my voice getting a lot softer & harder to talk, and that I'm not able to whistle anymore. When I try to whistle it seems my tongue isn't coordinating. I guess it's just another symptom to deal with. I'm off work right now until I get a diagnosis, medicated and then I'll take it from there. If that's not enough, now my dog who has Diabetes, looks like he's starting to go blind. I'm almost more worried about him than myself.

I know how you feel I have a dog that is 16, blind and deaf. I carry him out and pick him up and bring him in. He lives with me on our lower floor so I am with him 24/7.
Mike

Yeah, he's always there when you need someone. It's mostly in his left eye it's looks like it's a blueish-white cloudy film on his eye. I notice when I throw him his toy or a treat he has trouble seeing it. If I get diagnosed and have to get on Disability I'll at least have time to take care of him.

Bob, There is only 1 neuro in a 90 mile radius of me that does an SFEMG. I had to wait months. You are lucky to get an appointment so soon.

Be careful on the choking. I had to switch to mostly fish and only meats cooked to tender in a stew or casserole.

I am sorry about your dog. My dog has been my constant companion. She is by my side constantly and seems to sense when I feel weaker. She just sits on my lap and will not leave while I rest on the recliner.

Best of luck
kathie

Kathie, I sent you a friend request - I think that you and my MG hubby go to the same neurologist and neuro-opthamologist, based on your quotes. Would love to chat privately. Check your profile for the request.