Hi, just feeling frustrated. Been told I have probable ms. I saw my neuro who said she thinks its ms but can’t dx until changed mri or more symptoms. I take pregabalin and its annoying when I lose words and I’m getting more pain in my heel /ankle and finding it difficult to walk. My balance is ropey. I walk round the furniture on a morning til I get moving. When I went to france I couldn’t get medical cover because of not having a proper dx. Tired of people saying aren’t you better yet. Just fed up. Could I talk to a ms nurse without a dx?
Hi, I know how you feel about feeling frustrated, waiting for a ‘proper’ diagnosis can be difficult. Can I ask if you have ‘only’ had one previous episode that has left you with the remaining symptoms? If so, did the neurologist mention Clinically Isolated Syndrome? The reason I ask is that that’s what I was diagnosed with initially and I managed to get travel insurance no problem with Virgin, they actually had CIS on their list of medical conditions and the excess wasn’t too much. Also when I renewed the policy the following year (after I had had another episode but I still did not satisfy the McDonald criteria for MS) I told them I had had another episode but not yet diagnosed with MS and they still renewed the policy no problem with no increase to the premium.
As for speaking to an MS nurse, where I am (Scotland, Forth Valley) I was able to talk to the nurse at any time following my very first appointment with the neuro and they have been really helpful from then until now. I know from reading other posts on here that it can vary from area to area but it’s definitly worth asking.
Hope this helps
My neuro hasn’t mentioned CIS and my next appointment with her is in a years time. I’ve got a couple of lesions in my brain and an area of activity in my neck? They found o bands present in my spinal fluid. She told me not to worry , get on with life, she thought ms but that i may never have a second episode for years or ever. that would be easy if these symptoms would go.How come you weren’t diagnosed after a second episode?
I’ll ask my dr about CIS . thanks for replying
Well it’s a long story but after my second episode in May 2010 my neuro was sure it was MS but my MRI was unchanged (still only one lesion in the spine). I had a lumbar puncture done which was positive but the neuro still couldn’t tick the ‘multiple’ bit! He diagnosed myelitis and wanted me to start on immunosuppressants, I asked him if he would do one more scan of my brain before I agreed to that because it had been 15 months since my last MRI. Luckily he agreed and I had another scan in November last year which showed lesions in my brain, I got the MS diagnosis in December and started DMDs in February. So it was a fairly long drawn out time between first episode in June 2009 to now, although I think others have taken far longer and some are unlucky enough to be left in limbo for years and years.
You have to try not to worry about what tomorrow might bring, hard I know but you may never have another episode and you’ll have wasted valuable time and energy worrying for nothing