Sound familar?

[Guest guest]

Dr. Baughman told me 2 years ago he is sure that I have

neurosarcoidosis. I had a lot of trouble finding someone to do the

biopsy and then I lost my insurance.

I have asthma and restrictive airway disease, but my chest x-rays

were always normal. I haven't had a chest x-ray for about 3 years. I

had a electrophysiological study on my heart in July and had quite a

few heart problems. I also have pulmonary hypertension. I am taking

meds for my heart and lungs. I also shake really bad when I first

get up in the morning and sometimes fall. My right hand has a tremor

that is getting worse. I have muscle spasms and Charlie horses in my

legs so I take Valium to help with those. I have gastroparesis and

cannot digest very much food. I basically eat a restricted diet,

easy to digest food. My eye sight is worse. I have trouble

swallowing, get choked easily, and have a dry mouth. My memory is

shot and I have to be really careful (put food on to cook and

forget). My legs are really weak, hurt all the time, and are sore. I

have lymph nodes that swell in my groin, underarms, and neck. I have

numbness in different parts of my body from my feet to the back of my

neck, the spots vary. I am so tired that at times I sleep 12-14

hours straight. Just cleaning my small apartment is a big job for

me. I was in the hospital for 3 days in 2006 because my legs were

paralyzed. In 2006, I used a wheelchair and now use a walker and cane

when I need it.

I am going the 13th to have the biopsy in my left upper thigh. He

told me it will be about a 4 inch scar and he will go in pretty deep

so I have to be put to sleep. After I get this done, if it shows

anything, I will then see Dr. Baughman again.

I am doing this mainly to get a diagnosis on paper. My cardiologist

and rheumatologist-friend all think that I have NS.

To be very truthful, (I know some of you know exactly what I mean),

some days I feel like I am dying, other days I feel better.

I agree with Dr. Baughman and the other doctors, I just want it on

paper to be able to prove what I have.

Thanks for listening.

Bonnie