As a newbie I just wondered if I could hear Karens Story… I am sure you have done it before but have looked back and can’t find anything. I have only been coming on this forum for the last week and you give the most fantastic advice and wanted to hear your story.
If you don’t mind of course, if you do mind I am really sorry and just ignore this.
Hi Vicky.
Happy to tell my story, but it is quite a long one so it’ll take me a while to write it out! (And you might regret asking!)
Maybe tomorrow?
Karen x
Well I wrote it out. Problem is that it is nearly 1500 words! Definitely too long to post I think
Here’s the abridged version:
First signs (oscillopsia - uncontrollable eye movements; different to nystagmus) in 1984, when I was 19. Didn’t go to the GP (yeah, I know!). Weird things every couple of years that were easy to write off as a virus, a hangover or “just one of those things”.
First major relapse (mainly sensory) in summer 1996 lead to an MRI and LP in Jan 1997. Positive spinal MRI, negative brain MRI, positive LP = probable MS. (Horrible LP experience; 5 days in hospital.) More relapses that year; second opinion in December. New brain MRI was positive = MS. Fatigue was off the scale and making life impossible. I took partial ill health retirement in 1999 and started working for myself as a consultant, very part-time. MS settled by mid 2000.
Got bored with the consultancy and went back to Uni in 2001. Psychology degree followed by PhD (neuroscience). MS had been good (only minor blips + the never far away fatigue of course) and I got complacent; started working long hours. Major relapse late 2004/early 2005 (~4 months; mainly sensory again). Three(?) more relapses in the next 12 months. Read everything I could lay my hands on at Uni about MS. Started on Copaxone in March 2006 and cut back hours at Uni to three days a week. MS settled again. Only a couple of minor cognitive relapses (weird experiences!) up until 2009 when I finished my PhD. Was working at Uni, but fatigue got very bad again. Had to give up work completely in Jan 2010.
Started relapsing properly in April 2010. Neuro took me off Copaxone and scanned to see if eligible for Tysabri. Wasn’t; told to wait for new oral DMDs. Realised that I was out of date about DMDs and meds generally and got myself informed. Joined the forum in April 2010 as part of that, but stuck to the EL pages in the beginning. Horrible 6 months with loads and loads of new symptoms one after the other. Steroids didn’t work and left me with permanent digestive problems. By September 2010 I had full body tingling/buzzing/pins & needles, burning in legs and feet, spasms (all body parts), fasciculations, unpredictable knee buckling, vertigo, poor balance, not walking in a straight line, nystagmus, shooting pains, tremor, insomnia, incontinence & cognitive problems (+?). Some went into remission (completely or partially), the rest are well controlled with meds. Sometime about then I discovered the Limbo forum and noticed that there weren’t many experienced MSers replying so started trying to help a bit. Bilateral tinnitus in October (ongoing), autonomic problems and erythromelalgia started in December (remitted now). Trigeminal sensory disruption in May (felt like I’d been punched, but wasn’t neuralgia; remitted, but comes and goes). Finally started on Rebif in July 2011. Only a mild relapse of vertigo in October (remitted), but developed severe migraines in November (ongoing). Waiting for an appointment with a migraine specialist.
So, I don’t work any more (helping on here is my “self imposed day job” and gives me a lot of pleasure and purpose), I use a stick outside, a very snazzy manual wheelchair for anywhere that needs more walking than I can manage and, if you shake me, I rattle, but I am very firmly in remission now, am going to the gym regularly and am feeling better than I have since 2009.
I’ve been very lucky. My MS has been mainly sensory and I managed to avoid any permanent mobility problems for 14 years post that first major relapse in 1996. Since I was diagnosed I have run my own business, completed two degrees, got a merit in my RAD Intermediate ballet, a distinction in RAD Grade 8 ballet, a second Dan black belt in taekwondo and have competed in two European Taekwondo Technical Championships for GB. I miss not being graceful, I miss dancing and I miss taekwondo, but I have made a new life, some wonderful new MSer friends and I am happy and content. I have a wonderful husband and two great kids. Life is good
That pretty much covers it
Karen x
Thanks Karen It’s great to read your story. You have had a tough time with sensory problems. I have had little along those lines. My problems are mostly weakness of legs and some pain. Various other symptoms but that is the worse one. Reading people’s stories just highlights the variable nature of this disease. Keep posting please - it helps us all! Many thanks, Teresa xx
Karen, I can only echo what others have already said! You are a great inspiration. Despite what you have been through you have fought it and gone on to achieve so much! Well done! Kelly x P.s I used to do taekwondo also and loved it, I got to my Red Tag belt but gave up to focus on GCSE’s and got lazy… wish I had of carried it on though!
Thanks all. Please don’t turn this into a “thanks Karen” thread though! We had one of those not that long ago - that will do for a long time!
Never say never Kelly! I gave up ballet at 16, just before I did my Intermediate exam. Went back to it at 19 and gave up at 22 because I was moving. Started again at 23 and had to give it up at 24 (moving again), just before I did my Intermediate. Finally went back to it when I was 35 (in amongst 14-17yos!). The fact that I’d never done that exam had been nagging at me all my life 
Passed it at 38
Taekwondo is a brilliant sport. My neurophysio told me that one of the reasons I had stayed so mobile is because of it, and ballet. Maybe one day you’ll get that black belt…
Karen x
I know you dont want anymore ‘thankyou’s’, but as I was the one who asked you to do this in the first place, I just wanted to say it is so nice to know a little about you and understand why you give such informative posts too …so errrr ummmmmmm ‘THANKS’!!! opps sorry!