Attention Lelia Oster

[Guest guest]

Thank you for your prompt reply and the information regarding Inclusion Body Myositis. I believe this is more common in men than women. Looking backI believe this started about 15years ago.Thought it was a problem with my knees and diagnosed myself thinking I needed knee replacements. I did not have pain so I put it off as long as I could.(foolish foolish woman).I started falling so often I saw my family doctor and he said I should see a neurologist(smart doctor).Our local neurologist did some testing(emg., I think it was called) and diagnosed me with with phrephial (sp) neuropothy. Wrong diagnosis!!!! After spending two years with him all he had to offer was therapy. I did that and could see I was getting progressivly worse.I asked him what more I could do and he said "get a walker"Of course I knew then that I was in the wrong doctor's office.I told him allright but first I am going to get a REAL doctor.I live in Port Arthur,Texas,which is about 85miles south of The Houston University of Texas Medical school. On my first appointment in the medical center(one of the largest in the world) the neurologist (specialty muscle diseases) took one look at me and said you do NOT have phrephial neuropothy.,Suspected a muscle disease but needed more testing. Another emg.(OUCH) was done that day and was later scheduled for a muscle biospy and the rest is history. I would like you to ask the person you mentioned with IBM if is ok to make a contact.I don't mind my name being on the internet for all the world to see but not everyone feels that way and I respect that.Thanks for listening. It helps to find caring people and from what I have read so far this is a group of caring people. I know support groups can be very helpful and a vast of information can be found through them.God has blessed me with a good life'a good husband of 57 years, two good children and a good father that celebrated his 100th birthday in April of this year. He lives with us in our home and is a joy to care for. His mind is still sharp. Again thank you. Sue Gillespie.