Transvers Myelitis vs MS
I was diagnosed in 2018 with RRMS.
I have to say it was a huge relief as I had no idea what the hell was wrong with me. In the end I was being called lazy, hypochondriac and all sorts of wonderful names, non of which I relate too!
Fast forward to this year in April 21, and I had to see a new Neuro as the lovely man I was seeing had the nerve to retire and get a life!
So I met the new bloke, and he was so rude, didnt know me at all. Told me in the first 5 mins, I didnt have MS, there was NO lesions, I dont have symptoms, and I had TM. Off you go, good luck!
I was like whoaaaa hold on hold on hold onnnnnn a minute!
I DO have lesions as my other VERY NICE Neuro, showed them to me, I have a huge one at my C1&2, and other in my brain. I DO have a huge amount of symptoms and how the hell do you know if I have symptoms, you have not asked me, and what the hell!
Clearly I was completely blindsided by this man.
I have many issues, being all the MS symptoms, I have all my medical team ie phyiotherapists, OT, GP, friends with MS, etc etc who have seen me at my worst who have all been blown away by this new diagnosis.
Has anyone had this happen to them?
Has anyone been told they have MS only to have it retracted and told something else?
Apparently TM is still a serious neurological disorder, and the placement of the lesion I have in my neck is serious. But I was given no information regarding it.
My symptoms I have are:
Pain
Spasticity in my lower limbs
Vertigo
Trigeminal Neuralgia
Cog Fog
Vision and hearing impairment
Extreme heat intolerance
Right foot wants to turn in
Fatigue
Speech difficulties
Eyes want to close at times
pins and needles in random places
Word finding problems
Tremors and the list could go on...
I see another neuro on Sept 2nd for another opinion.
Thoughts? Anyone?
How horribly frustrating,
! We are not medical experts, but I would question how that neurologist explains the lesions on your brain. We have some people in this community who have been diagnosed with transvers myelitis and have wondered whether they might have MS, and others who began with a transvers myelitis diagnosis, and then were later diagnosed with MS, but I have not personally seen posts from anyone in your situation. I am so glad to hear that you are seeking out a second opinion. Please keep us posted if you feel comfortable doing so. I will most definitely be thinking of you. - Lori (Team Member) Yeah ill let you know. I have told people here in Perth, Western Australia and they are all very shocked. Im no medical expert, but I can spot an arrogant medical professional a mile away!
Goodness, kimmoi! Holy smokes that is so incredibly frustrating to hear on your behalf. I can't imagine how frustrated you must have been to hear him gaslight like that. We've had a few comments that I can recall from community members that have also discussed having an MS diagnosis, seeing a new doctor only to be told that they didn't have MS without really taking the time to look into their history prior. I wish I could locate the comments and share the threads but they've been so spread out at this point. Just know though, that you are not alone in having that experience, unfortunately. I second in being glad that you're getting a second opinion. Please keep us posted on how it all goes! We'll be sending lots of well wishes! 🧡 Kayleigh, MultipleSclerosis.net team
