Over the last 2 years, I've seen 5 neurologists, including one who is specifically an MS neurologist. She said, "You do not have MS." I cried.
In the year since I saw her, I've had a repeat MRI with 9 new lesions from the previous year. I have increased symptoms, fatigue that I just battle because I can't take naps when I can no longer hold my head up.
I'm seeing a new neuro who has now ordered BAER, VEPs, lumbar puncture.
I saw an orthopaedic doc for a knee injury and it happens that his wife has MS and he tells me that just because the MS neuro said it's not MS does not mean I do not have MS. He feels my symptoms are very typical of MS.
I was at a picnic with my family on Monday and tried to throw a bean bag. I could get the arm swing going, but I was unable to initiate releasing the bag to actually throw it, instead would just let go and have it fall a foot in front of me. Made for lots of laughs at the family and I laughed along with them joking about my poor throwing skills. I didn't tell them that I couldn't throw. I tried to throw a pen later just to see if I could, I couldn't. I'm no longer able to pick up pills from a hard surface because my pincer grasp shakes and I'm never sure if I have the pills cause my feeling on the right is greatly decreased.
I live alone. I'm self-supporting. I work with my hands.
I'm repeatedly told to stop borrowing trouble, but I also have to face a reality I'm not sure of. What happens if I can't work? What happens if I can't find anyone who says YES this is MS and this is what we're going to do about it? I've had relapsing/remitting symptoms since 2000 but since a visit to Florida in 2007 where my symptoms flared big time and have never totally gone away again, I've dealt with neuros telling me no that's not MS; yet urologist says my urinary symptoms are likely MS; my ortho says the lack of feeling I'm having is not related to a knee injury but sounds like MS; my ENT tells me my inability to initiate the swallowing reflex is likely MS;
I'm just scared of what this all means and frustrated because I don't really care what the medical community calls it.... I just need to know how to live with it without being petrified.... btw, I'm 52 and because I was past 40, many docs are telling me I can't develop MS.
Post Edited (GrizLeeB) : 5/28/2009 7:13:11 AM (GMT-6)