[grandmaKay]

Hi: I wanted to introduce myself. I am 63 and have had fibromyalgia for 20 plus years. About 5 years ago I started having swallowing problems. I saw my doctor who ordered a barium swallow. It did show something was amiss so the doctor sent me to a GI doctor who did a EGD, but he couldn't find any reason for the problem. So I sucked it up.

Two years ago I started having problems with my gait and weakness in legs and arms, trouble going up stairs and getting off the sofa. The doctor ordered xrays and sent me to PT. Didn't help, so off to the orthopedist I went. He ordered MRI's of lumbar and cervical spines. According to the MRI's I had normal changes for a 60 yr old woman. So he suggested I go to a neuro.

Off to the neuro. MRI of brain done alone with nerve conduction studies. MRI ok, nerve conduction study showed some problems, but she said it was just my firbromyalgia. She also ran labs on vitamins, they were all normal. I take b12 sublingual twice a week and take Vit D regularly.

A year ago my voice started changing, it would get hoarse after just talking for a few minutes, the swallowing problem was getting worse and my fatigue was really bad. I was usually in bed by 8pm exhausted. Then 6 months ago I started having shortness of breath. Back to the doctor. He did a chest xray and it showed a shadow, so a chest CT was done and a PFT. CT came back with emphysema, but the PFT showed a restriction. I wanted a referral to a pulmonary doc, my PCP said you have emphysema, get over it.

I never smoked, my parents did, but I would not accept that diagnosis and wanted a second opinion. So, I went to UCLA and saw their best pulmonary guy. The doctor told me it is not emphysema. He did a complete assessment and believes it is MG. I have a more advanced swallowing test scheduled for Friday 6/30 and another PFT on Monday and then I see him right after the PFT that same day.

My dad died of ALS, so I am aware of neuro muscular disease, plus been an RN for 30 years. I know that something isn't right with my body and it is not my fibromyalgia.

When I see the pulmonary doctor on Monday I am hoping he will run the AChR test before he sends me to neuro doctor. It is frustrating that I may have had this over 5 years ago and no one took the time to figure it out. Unfortunately I didn't even really know much about MG until now.

This past week has been really hot here in So California and I could barely function. Had to use my cane a lot to get around.

Thanks for listening and I am so glad I found this group. I will let you know what happens next week with the pulmonary doctor.

Kay