Hi, so I had my third neuro appointment yesterday. I was diagnosed with transverse myelitis in February this year, and have had on going symptoms since then, my MRI showed the TM in my cervical spine and 2 lesions on the brain, so after that the neuro wanted to see what happened in 6 months, so I saw him yesterday after the 6 month wait. I have to say I was a touch annoyed as he wasn’t interested in hearing about my new symptoms but was only interested in whether I’d had another attack or not. I know they won’t diagnose until a second attack but I thought he might at least want to know if anything new had happened, which a lot has! He told me that I wouldn’t feel unwell during an attack, can’t remember feeling well with the first one and he told me that MS is painless again during first attack my skin hurt! So I don’t quite understand those comments. He seemed to think I was going to be happy to wait a year to see him and leave it at that for now, so I did a bit of pushing and eventually he offered a lumber puncture so I said I would have that. I was just wondering if having a LP is going to be one step closer to knowing more, and I could get a diagnosis afterwards if positive? Or is it better to have waited! Sorry for going on but would appreciate your comments. Imo x
Hi, I was diagnosed with tm 18 months ago lost the use of my right hand and wrist & my speech went funny, couldn’t get words out. I was left with 2 lesions on my brain. This was all following a virus. I had veps which were positive but a negative lumber puncture. He told me to get on with life and that it would likely only happen once. I went back to see him 6 months later and he just asked if any new symptoms I said of a couple but he said there just left from the attack. So I’m discharged now. I think because the lumber puncture was negative I didn’t have ms as it stood then. Not sure about now but I know he wouldn’t be interested! I would say though that if you have a lumber puncture and it comes back positive than that will be a positive diagnosis. Sorry I went on and hope it all goes ok. :0) xxx
Hi that neuro is way wrong and just out of order!
No pain in an attack nor MS in general! I think many folk on el board would argue with him on those 2 points.
Did he write down your new symptoms? It all adds to your notes in helping find a diagnosis.
I often see that people have been discharged, but I have been seen by a variety of neuros over a 14 year period and I still dont have a full diagnosis.
PPMS was suspected for a long time, but last year it was finally discounted. They dont know what has caused my loss of mobility and other problems.
I see another new neuro on 16th. I am a medical enigma! Perhaps they see me as an interesting challenge!
A positive LP should go a long way to getting a fuller diagnosis. If after that, he is still unhelpful, try to see someone else, eh?
I have just been diagnosed with MS. For your neurologist to say you shouldnt have any pain seems ridiculous to me. Why dont you think about asking your GP to refer you to a specialist MS centre to get their opinion. All the best xxxx
Thanks everyone for your responses! I’m glad I’m not the only one to disagree with what he said to a certain extent, was beginning to doubt myself! Hopefully I will get some more answers after LP, and if still not satissfied I will be asking for a second opinion! Imo x