@Rachel_Hilton_1 

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Rachel_Hilton_1

when and how were you diagnosed?

Hi. My first symptom was optic neuritis although I didn’t know it. My vision was blurry and missing down my left hand side. That’s the only way I can put it, it was just blank down the left-hand side of my eye. I saw my GP and they said they thought my problem was as a consequence of migraines, and I then went on to see a neurologist, but not an MS neurologist, and he agreed and said oh migraines! So I carried on just taking the tablets, and it became gradually worse. my hands went numb and became weaker, and I felt exhausted all the time. I then saw a different neurologist and he admitted me to hospital where I had tests for several weeks, blood tests, scans, MRIs, everything, and nobody had any substantial conclusion. I didn’t find out till two years later!!! when I had a bad relapse and they said oh yes two years ago we thought it was ms but we couldn’t be sure so we had to wait till you had a relapse to be able to confirm it. That was in Dec 2006, so officially I’ve had it since 2006, but I know I had it for years previous that. My hands are now constantly numb with pins and needles and I’ve had to give up working several years ago. I can no longer drive. That occurrence of optic neuritis did eventually stop and I could drive but now has come back with a vengeance and I am constantly dizzy. I can’t walk very far, I’m okay round the house but any further than that and I struggle and I am always so very tired.
@emzxx

Hi Rachel, I'm Emma. My first symptoms were dizziness blurry eyes and severe headaches , I got referred for an mri then to a neurologist who did a few tests and then sent me for a lumber puncture. The results came back from that and I was classed as having CIS. I then went on to have symptoms of numbness , pins and needles, nerve pain in my back. I was then diagnosed with RRMS in 2017. Are you on any medication?x

@Rachel_Hilton_1

@emzxx Oh God I’ve forgotten about the lumbar punctures, well, more like tried to put them out of mind, they were dreadful! Yes I had headaches as well but unfortunately the neuro, the original neuro, thought they were migraines. I’m now on Lemtrada, I had the first lot in April last year and hopefully I’m having my second lot in April this year, so fingers crossed for that, figuratively speaking, because I can’t really cross my fingers anymore. I was on Tysabri for about seven years and that worked really well, but unfortunately the risk of PML became an issue so I had to stop. I’ve tried different medications since then, one sort was daily tablets although I can’t remember the name, I had a relapse on that, quite a bad one, and finally they put me on Lemtrada. I’ve had an MRI since my first lot and the activity in my brain has increased so goodness knows what will happen if that is the same after the second lot. I’ve been told Lemtrada is the strongest drug they have.