Hi,
I have received a letter forwarded by my GP, that they received from my neurologist. It states that a recent MRI did not show any new lesions compared with the imaging carried out in March 2014
The thing is I am experiencing worsening balance problems, increased pain and numbness from my waist down which disappeared for a while and then returned.
My question is. Can things get worse without new lesions.
I’m now thinking I may never get diagnosed. The last time I saw Neurologist he said he thought it was MS but would not diagnose without further evidence.
any advice would be very welcome.
Oh my I couldnt believe when I just read your post as it’s exactly what I’m going through had first Mri in March showing 12 lesions my Neuro was all for it being ms then my lumber puncture came back clear in August and his attitude changed he sent me for another Mri to compare and guess he was looking for new lesions but like you it came back with little change and he has discharged me 
I only no this through speaking to his secretary last week … So Evan though like you my symptoms have been on gradual decline for the past 8 months without any let up … I’m just left to get on
sorry I can not offer any advice but perhaps it may help to no your not alone in this
fingers crossed for you that all gets sorted
xx
Hello Hitch
You say symptoms have become worse below the waist, so that suggests ? spinal lesions. Is that what your last scan was? If not then you should be asking for a spinal MRI.
Take care x
Sorry to hear they have discharged you. It’s very frustrating. It’s makes you feel as though your making it up.
They tried to do lumbar puncture, but after 12 attempts they gave up. I went through this 12 years ago, had MRI which showed lesions, LP came back negative. The neurologist said he thought it was MS, my GP was informed I had MS. Then I fell pregnant and all symptoms disappeared. Stayed clear for 6 years at which point new neurologist told me it wasn’t MS and discharged me. Everything was fine until February this year. This time round I’m in so much pain. It’s seems that everything below my head hurts.
Hi blossom,
All my MRI’s have been spinal and brain. Not overly sure where the lesions are. The neurologist didn’t go into detail. Just said I had some. Don’t know how many or where.
Hi everyone. I find it very strange that you need a lumbar puncture as my neuro was happy to diagnose with the brain lesions alone and told me that having the lumbar puncture only makes the chance of MS going from 90% to 96% sure. The MS nurse tells me I won’t need a further MRI unless there is any change. What do they think the lesions on the brain are if it isn’t MS? Pretty newly diagnosed so maybe I am naive but without diagnosis you won’t be able to get DMDs . I only had 4 lesions so 12
seems a lot to me without a diagnosis but I take it it’s where they are !!
I have been given no explanation not Evan a appointment with my Neuro to find out what my last Mri showed just a call from his secretary to tell me to expect a letter and that he was handing me back over to my Gp … I’m going to try and get a second opinion as I’m not happy with the way I’ve been treated
xx
Hi all,
I thought i would update you all. I had an appointment with neurologist on Tuesday. To be honest i was expecting to be discharged as there was no sign of new lesions. However I was diagnosed with SPMS which was quite a shock. I asked where lesions were. I have one on my brain, and five on my spine.
Its a major relief to get diagnosis at last. This first started 13 years ago.
Cody01 keep trying, there is light at the end of the tunnel. Don’t be like me and think its all in your head, and ignore the symptoms. Any little change go to your GP and keep nagging them. If its not MS then what is it!!! Good luck x
Hitch - Commisulations on your diagnosis (that’s commiserations but congrats on finding an answer). Can they offer you any help now? I’m off to see my 2nd neuro tomorrow and hoping for some clarification after I gained new and worsening symptoms since seeing the first in January.
Reikiblossom - My neurologist didn’t want to bombard me with too much info. I am waiting for an appointment with MS nurse. I have no idea if there is any treatment out there. He is putting me forward for physio, to help with balance problems. I’m waiting to speak to MS nurse xx