My first neuro turned out to be a waste of space, although I didn’t quite put it like that to my GP. I just explained to my GP what the neuro had said and why I wasn’t happy and I asked him to refer me for a second opinion. I don’t think my GP was any more impressed with that neuro than I was because he did me a new referral straight away, although it was then a couple of months before I had my first appointment with my current neuro.
Since then (just over a year ago), I’ve had 3 appointments with my current neuro, had more tests and got a diagnosis. If I’d stayed with the first neuro I suspect I’d still be in limboland.
Good luck.
At least you got sorted which is great news. Did your first MRI show lesions? Mrs B x
I’m honestly not sure what the first MRI showed: it was of my brain only and the neuro wrote a one-sentence letter(!) to my GP about it that my GP admitted he didn’t understand. I think it showed one demylination plaque, because that neuro said I had “clinically isolated syndrome”. He was waiting for me to have a relapse before he confirmed MS, but I’ve got PPMS so I don’t have relapses.
I know that my second MRI showed “lesions consistent with MS” (or similar words), but how many are in my spine I don’t know - for me, it’s enough to know they exist and they explain my symptoms.
My MRI was ‘within normal limit’ so could have had a lesion or two, I don’t know.My new symptoms are ones that the neurologist didn’t see and are quite visible - a droopy eye and involuntary movements, as well as changes to my gait (my daughter said I’m waddling like a duck) and a regular journey is just becoming more and more difficult. I see my GP tomorrow.
Have you been checked out for myasthenia gravis? I don’t want to scare mongering , but it was when you mentioned the droopy eye. Apparently it won’t be picked up by MRI scans. The radiologists are pretty good and if they had seen a lesion I doubt they would have classed an MRI as within normal limits. Any lesion even a single one would not be classed as normal. Normal limits would mean no evidence of tumours, stroke, Lesions, or damage to blood vessels. However, lesions can heal to a point of going unnoticed on MRI, and even though the symptoms might be disabling, it can be the result if a tiny lesion. Size of lesion doesn’t necessarily relate to level of disability or symptoms, which is why people can have a number of lesions and never have had any symptoms. There is evidently something going on, and it is causing you far too many problems within everyday routine, affecting how you basically live. I notice you said you were back with the gp today, how did it go? Take care
Hi all Firstly thank you for your replies to my Q on MS Since I last posted I’ve had another episode where my left leg went paralysed as I went to stand! As I couldn’t stand had a 180 degrees spin & fall, if it wasn’t so painful it would have been funny, anyway left me with broken ankle and another visit arranged to neurologist . As I have lupus I know some of the symptoms can mimic , but losing use of limbs is not one of them, I’m now getting worried, has anyone else not yet diagnosed had this paralysis ? It’s getting so confusing as I’m unable to walk without walker as I do have a lot of falls, can it take a while to diagnose or to dismiss MS Thanx again to all you guys who answered, it’s great to know you are all out there Maxxi
I had a good GP visit today. I explained my recently developed involuntary movements and he agreed that they are myoclonic jerks. I also told him about the increased numbness which feels like wearing an odd bodystocking (thicker on the left). He actually apologised that there wasn’t really anything he could do for me but referred me to a different neurologist. I had mentioned that I felt that MS had not yet been effectively ruled out as I had my scan on a T1.5 and he was unaware that there are different strengths if MRI. (My local hospital also has a T3 MRI). I’m hopeful of further investigation. So, more waiting. At least I’m used to it by now!
Hi I had a sceptic meningitis a year and a half ago with lots of unusual symptoms ie full body numbness ect. All MRIs came back normal but my lumbar puncture showed inflammation hence the meningitis diagnoses. I was told I had FND. A long year and a half of continuing symptoms and being told it was FND I insisted on a second MRI in October. Two spinal lesions were found and after another lumbar puncture which had positive oligoclonal bands I was referred to an MS specialist. A bad flare of symptoms this week landed me in hospital last week and I got my official MS diagnoses 2 days ago. Quite a relief actually. In hind sight that meningitis was actually my first flare and when the spinal lesions were developing. So they can take a while to show up on MRIs. Would you consider a lumbar puncture ( under X-ray guidance) to test for positive bands and inflammation. This would take you one step closer to an MS diagnoses.
Good luck, Julie
If you want a second opinion, do the research first.
Look at the private hospitals within easy reach, and find which one(s) have neurologists. Now get their names.
Now look up those names and you should see which NHS Hospital they work at (and their particular expertise).
Pick one at a different hospital to your present one (but which you can still get to) and ask to be referred to that person within the NHS (taking note of Pandagirl’s link above).
You will have to accept that there could be some delay in getting an appointment.
THe internet is great for looking up such things.
Just ignore the MS Soc “Near Me” tab on the home page - it can be laughably out of date - but when you have identified a possible Neuro, then take a look and see if they are shown. If they are, it does indicate that they could have been there for some time.
I took the other route and went private, and then got referred by the Neuro to himself at his NHS Hospital.
Geoff