Was expecting to discuss medications and DMD'S with my specialist
today , but instead of being told as expected that i had r&r MS i was told
i have progressive MS so that went out of the window ,
he said i may still be borderline and has booked another MRI to see
if there has been any new lesions since the last scan .
not something i was expecting from my first meeting with the specialist ,
feels like im back to where i was before DX
I am seeing one in a couple of weeks, was referred by my neurologist.
What should i expect? What makes these individuals different from seeing a regular neuro?
Why is it that although i was diagnosed with ms i haven't actually seen anyone other than my regular neuro who apparently isn't an ms specialist.
Sorry to sound like an idiot here but i am genuinely confused.
Well, I went off up to London again yesterday, on the 06.30 train !
Saw this Professor, an MS Specialst, and another Neurologist.
They once again went all through my history, test results, MRI and pointed out all the lesions where the expect to find them. Another full Neuro exam, the falling over tests, eye tests (discovered nystagmus that I hadn't had before)
Then they went off for a chat together, then they came back and did some more tests.
He (the Professor) talked about PPMS and SPMS, then said that I didn't meet the full criteria although it all pointed to MS. He then had another good look at the MRI lesions, of which there are many.
They took some more blood, and he said that he was testing for some extremely rare conditions, also looking at my copper levels ???? and for 'very long chain fatty acids'. I've had about 6 blood tests now, but I guess they didn't do these ones.
They are going to to VEP's (that they didn't do last time I was in)
Are going to review my MRI of brain and spine with some other specialists (no lesions in my spine so they are taking a closer look)
The whole thing took over 2 HOURS !! The clinic was heaving with people when I came out
I know that they must rule out everything, and I'm sure he said they are hoping to find something in the cord.
I feel very confused and a little unsettled by all this. I am just getting used to the M.S. DX, and now I feel as if the whole thing has been thrown in the washing machine. I feel dazed and a bit scared about the tests for these 'very rare' conditions, and frankly, feel as though I'm going backwards, instead of forwards.
Am to continue on my medications of Gabapentin and Baclofen, and keep up the physio, and go back in 3 months when VEP and bloods, plus the MRI review has been done.
Has anyone else gone through all this malark, even after a DX has been made, or are they just being ultra careful?
Hello all you lovely people!
I have been absent for a while, I know but am always looking in on you all. If you can remember, I had MRI head and Evoked Potentials and was dismissed by neuro following that.
I have since tried to continue as normal, not focussing on any pain etc.
I have however, had a problem with my left arm which I think I mentioned in an old post, which has now gone on for over a year.
After seeing the doctor over 5 times in that period, I finally saw a locum who has referred me to a spinal specialist for an MRI of my neck so I am really hoping I might get some answers now.
I hope you are all coping ok and are appreciating the cooler weather!!!
Love to u all
I thought i would bring you up to date with what's been happening with moi. The CFS specialist that I saw yesterday, is sending me to another specialist who has an interest in sight loss and stroke. This wasn't unexpected, as I did think my last episode of loss of eyesight, was down to something else, and not ON - over the years you get kind of used to the signals your body is sending you.
I just have to wait for the appointment and will keep you updated as I go along. In the meantime I am trying to be good, and exercise. But as you know,it isn't easy.
Founded in 2004, MS People UK is a community website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.
If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.
The atmosphere is friendly whilst being compassionate, supportive and caring. Members also post about a variety of subjects not related to MS, as well as share jokes, talk about their hobbies, have fun, and more.
The MS People Forum is not responsible for advice or information supplied by members. We suggest you seek medical advice before trying anything.