Well went to see the MS specialist. Very thorough with history and tests
Basically at the end she said well I’ve had all the investigations to rule out other things and from my history you could define 2 possible epsiodes of symptoms - but with non-specific lesions and nothing obvious on the neuro exam they can’t say it’s definitely MS - though most likely this is what its looking like as other things have been ruled out. She offered me an LP and VEP and I asked if I had it done and it was positive what would the outcome be and she said probable MS but it wouldn’t mean I would get treatment as MRI isn’t showing anything. She said if I didn’t go for an MRI we wait for the next flare up/ review in 6 months and maybe repeat MRI. She aslo said the risk if LP was positive is to be labelled possible MS when there’s a small chance it might not be.
So taking all that into account I know others may have decided differently but I have decided to wait. If I have another flare up or the neuro assessment in 6months shows more then I will most certainly go for an LP &VEP. But I think I don’t want an invasive procedure particularly if I don’t get any treatment at the end. She also said if at any point I change my mind I can come back for the tests.
It was a difficult decision. I guess this is looking like MS now from the conversation I had with her but time will confirm it.
I was in there over an hour so no complaints. It’s a relief to be believed and to know that I was right to think this could be MS so just knowing that is a relief.
I’m glad you are happy with how it went today. It is a difficult decision when the ball is in your court to decide whether or not to have more tests, especially if its not going to make much difference to the overall conclusion.
I certainly wouldn’t undergo another lumbar puncture, it IS invasive, and you could be unlucky and suffer the awfull after effects.
The advantage to having a VEP, which is NOT invasive, would be to lend some weight to your possible diagnosis, and a negative one, combined with negative MRI’s would almost certainly rule it out, as I understand it. It could move you closer, one way or another, fairly painlessly, and could save you months more waiting and worrying, well, depending on how long the waiting list is in your area! Personally, I’d chose the VEP in the hope that it led me closer to it being ruled out. If its positive, you’re still in the same position you’re in now, as a ‘possible MS’.
Hi Reemz, I did exactly as you did. Waited for another attack and/or new activity visible on MRI after six months. Got the latter, and was diagnosed (No LP, ever - why do they all seem to insist on this, when it’s not 100% anyway, and should only be needed if other evidence is inconclusive?) VEP is preferable, in that it’s non-invasive, but I must warn you mine was normal, and so contributed nothing at all to the argument. Normal VEP unfortunately cannot rule out MS. Tina x
Hi Reemz, I originally said no to the LP and it was only when I saw my ms specialist that I decided to go for one because of all the other things going on. Given the pain I’ve had following my LP which was about 6 weeks ago now and the fact that it took experienced doctors over 30 attempts - would I go for another LP - no bloomin way! Think you are doing the right thing
Your thoughts are reassuring that I’ve made the right decision for me.
Tina & Karina - I was thinking about what had happened with your stories on my way back from the appointment. Thank you for sharing they really were helpful in making my decision.
Hopefully I’ll carry on feeling okay and nothing new will happen anytime soon but its reasurring to know that if it does I have a neuro that will help me push for more answers if things get worse.
Thank you so much for your support. I’ve learnt heaps from this forum and it really made the difference as I felt I could be confident and focused on what I wanted to achieve with the appointment.
Hi Reemz, Glad you got a nice neuro and sorry she couldn’t give you a definitive answer. You have to do what’s right for you, but just to give you my experience, the lumber was done with a very narrow needle and I didn’t have any side effects. Hope another episode never happens for you, Chis
I was prepared for not getting a definitive answer. After all the advice on here I knew it would be quiet difficult to diagnose me as definite MS with non-specific lesions and minimal signs on the neuro exam.
I guess for me its not a worry so much about the procedure - even if its unpleasant I’d do it if it would make the diagnosis and give me treatment. But as it still doesn’t definitely confirm it’s MS if positive and I still wouldn’t be treated I just wouldn’t move much further.
It’s certainly nice to know you had a good experience. I think if anything new/different happens symptom wise I wouldn’t hesitate to go for the test. I guess feeling pretty good at the moment isn’t spurring me onto have it.
Thank you for your input though. It’s greatly appreciated.
Glad if it helps, sometimes it’s good to hear a non horror story! Hope all continues to be well, I was just thinking of you and your partner the other day and how brave you were to tell your parents, hope things are still well for you on that front too. Chis
Thats really nice of you to say I was brave - it has been very difficult. My family knew I was going for my neuro review on wednesday - they didn’t ring me to ask how it went. I told my mum and sis this morning eventually and they were like okay. So since I’ve told them about Marc they haven’t been the most supportive on the health front either. I know it’s difficult for them all but its just disappointing they’re not there (not that they understand what MS is - there viewpoint is almost pray to god and you’ll be fine). I think they’re a bit in denial.
Suprisingly inspite of the added stress of telling my family my health has been quiet good. I hope things continue going well. Going to be very busy from now on as I write in my spare time and to have some form of jewish wedding having to learn a little bit about the religion so have classes every friday, bummer is it takes 2 hours getting there after work and 2 hours to get back. Me and the other half didn’t get home till 12 yesterday and what with working fulltime I was pooped.
Just hope I can manage it all.
Thank you again for asking. I hope my parents come round in the end but if they don’t I have to do whats right for me. I can’t let myself be stressed about it - it’s only going to affect my health and I want to stay as well as possible so trying hard to not let it get to me.
