changed diagnoses

[golfingsue]

been told i have ataxia for 5 years but they think i have primary lateral sclerosis, is there anyone out there with the same

[suzie44na]

Hi golfingsue, I am told I have ataxia, but caused be something else. I don’t have a definite diagnosis. Still trying to find out if PNKD is my problem, but not sure about this either. If you don’t mind me asking how do they test for lateral sclerosis are they doing more tests for you? I have had the wrong diagnosis before and lived 10 years with it and it was wrong. It sure can be stressful not knowing.Best wishes Suzie

[golfingsue in reply to suzie44na]

hi I am waiting for lumber puncture & EMG on leg muscles + some more blood tests,I have been under prof Hadjivassiliou for 4 years but he sent me to a prof Shaw who is specialist in motor neurone symptoms.at same hospital inRoyal Hallamshire hospital, Sheffield.All the best, Sue

[BlanketTime1]

i just want to wish you peace of mind. i've been there, in fact it seems each neurologist believes i have something different.🙄