Hello everyone, i dont have MS but i thought i would share my experience of my diagnosis process, i have found reading posts on here over the past year to be comforting and informative and although i havent been diagnosed with MS i thought i would share my story as having gone through the neurology process seems to be very difficult for everyone, i started experiencing minor problems in feb/march 2021, i didnt go to the doctor until june 2022, i hate going to the doctor so left things longer than i should have, i was referred to a neurologist who i saw in sep 2022, i was examined etc for over an hour and was told that it was most likely MS, he said as i was female and relatively young this was the most likely cause of my problems, i was shocked, i didnt know anything about MS so when i got home i read up about it, after spending a couple of hours researching MS online i came to the conclusion that i didnt have MS and had a feeling of relief, over the past year i have had 4 sets of blood tests, x rays of my neck and spine, 2 mri’s of my brain and spine and finally in june of this year a nerve conduction study and an emg, everything was normal except the emg which showed abnormalities of the nerves within my muscles, i have now been told that i have a disorder of the motor cortex and its probable mnd, ive to have the emg repeated in a few weeks to ensure a correct final diagnosis, reading here i can see that diagnosis for neurological conditions is complicated, frustrating and a pretty horrendous road to go down, its a roller coaster from hell, surely there must be a simpler way of doing things that makes it easier for all of us, in my case if the emg had been done first i would have had a clearer idea of what was about to come my way, i realise that a lot of the other tests would have been done as well but it just seems strange that the order in which these tests are done is so rigid, i now know mnd was suspected from the beginning but that things are done in a certain order to rule out everything else first, but why they told me at the start that it could be MS when clearly it wasnt is baffling, i spent a year wondering why my symptoms of “MS” were so different to people i was reading about who had MS, i would rather they told me all the possibilities instead of just picking one out, at least then i could have educated and prepared myself a bit better for the shock of my life, so to all of you here who are diagnosed or having neurological symptoms but as yet no diagnosis, you all have my sympathy, it has been the most up and down, frustrating and exhausting experience of my life, my advice to anyone who is on the neurological diagnosis path is to educate yourself about neurological conditions as much as you can as early on as you can, ask lots of questions, take someone with you to all of your appointments, i just wish the diagnosis process came with more support and communication and was simplified for all neurological conditions, especially neuromuscular disorders which i now know can be complicated to diagnose, dont let the process drive you mad, its all in a days work for the neurologists but for people like us its life changing. Love to all x
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Thank you - you make some very good points!