Hello, my name is Kay and finally got my diagnosis with relapsing-remitting MS after three years since the neurologist went ‘Yes, you might have that’
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Hi Kay
Graeme
Welcome Kay - hopefully you will find this group helpful. We are just finding a way through to the start of a long journey - in some way it is good that you can put a name to your illness, but what an illness to be diagnosed with! we are struggling as to how to deal with something that may or may not relapse etc
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Hi Kay.
Welcome to the gang!
i’ve had rare spinal PPMS for 25 years.
Boudsx
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Thank you for the welcome. I have been in limbo for three years, even working the front line through the pandemic waiting for test after test. The point where my Neurologist sat down and went 'Yes, you have MS has left me in the ‘what now?’.
The oddest thing was that I always suspected what I was dealing with as my older Sister and Mother have MS. My Sister has RR like myself. My Mum, however, has Primary Progressive.
So, because of work, I always leant towards patients with neurological conditions and always read and asked people to understand what the patients were coping with, a lot was MS-related. This is coupled with those above familial standing. This meant I knew a fraction more than the average bear. What I don’t know is how long it will take me to leave the ‘what now?’
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There is never a good time to be dx with RRMS, but if there was, it would be now. The drug treatments available today are light years ahead from the position in 2000 or thereabouts, when I was dx. That flows through powerfully to quality of life and health prospects. For many with experience of MS in the family or (in the case of HCPs) patients they have cared for, that means the MS they have witnessed might not be their MS, or anything like it, or not for a very long time, anyway. Some things really have got better.
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Absolutely agree with Alison here. My mum had a particularly aggressive MS, ex in 1994. She passed away in 2001. It was dreadful to watch. At that time there were no treatments, except for huge amounts of steroids.
Skip to now and going by the two MRIs I have had, I would probably have followed a similar road if it weren’t for the treatments available today. I was started on Tysabri and have had no worsening since.
Jx
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That is good to hear. I have had no relapses or worsening in the 10+ years I have been on Tysabri either. All of my permanent disability was accumulated in the previous 10 years on the weaker drugs, but even they were better than nothing. I hate to think what state I would be in without these medications, and am just really grateful to be as able and well as I am.