Lisa's MS Diary

Hi my name is Lisa and I have Multiple Sclerosis (MS).

 

On 14th January 2003 my World turned upside down when I was diagnosed with Relapsing Remitting Multiple Sclerosis. 

 

I first experienced symptoms a year before diagnosis. I kept tripping over and falling. My left leg and foot would drag and catch the ground I would fall anywhere, in front of people I was so embarrassed. I was also experiencing dizzy spells that would just happen anywhere again even out in public I would fall to the floor and would have to wait for it to pass before I could stand up again. I obviously went straight to my GP who then referred me to a Neuro consultant and after an MRI of my brain and a lumbar puncture I was diagnosed with Relapsing Remitting Multiple Sclerosis.

 

I knew nothing about MS and of course I was only 33 with 2 young children not sure how my future was going to be when it wasn't long until I found out that unfortunately MS is a debilitating disease. For those unfamiliar with MS, it's an autoimmune disease where the immune system attacks the brain and spine. Symptoms are unpredictable such as numbness, tingling, mood changes, memory problems, pain, fatigue, blindness, walking issues, coordination problems and/or paralysis.  I was quickly put onto medication Rebif (I had to inject myself 3 times a week)  to help control further relapses and to help slow down the progression of the disease. 

Unfortunately it wasn't long until I started having side effects and then onto my next drug Avonex (I had to inject once a week)  Then at the age of 40 I had my third child. a baby boy.  At this time I was still very mobile I was still walking unaided although my left leg would drag and my left foot had slight foot drop.  I suffered with dizziness, pins and needles, numbness and fatigue too.   I then went back to Avonex but started to relapse with burning and pins and needles sensations in my right hand and arm ...I was relapsing.  So I was quickly given steroid infusion to try and calm the relapse down. I was then put onto Tysabri infusions once a month and this seemed to settle my MS down but unfortunately as the disease naturally progressed so did my mobility. I carried on with Tysabri for for 3 years until unfortunately I was told I'd gone positive to the life threatening side effect PML an uncommon brain infection that can lead to severe disability or even death. PML is caused by a mutation of the JC virus, a common infection completely unrelated to MS.  So I was then moved over to Gilenya ... a tablet taken once a day.  Unfortunately, yep you guessed it I suffered so many side effects after 6 months I had to stop taking it. 

 

So back to see my Neuro Consultant who then tells me that unfortunately I did not fit into a criteria now for another DMD so no medication for me!! 

 

So where am I now with my MS ...  unfortunately I have now moved to Secondary Progressive MS my original symptoms have worsened although I now no longer show any signs of any new relapses on my MRI's. 

 

So yes my mobility has worsened over time and I now need help with everything in my normal day to day life.  I am now either in my wheelchair or most people will see me on my mobility scooter.  Life is very hard and I so want to get more mobility back and would love to gain some independence. and to walk again.  I don't want to live the rest of my life depending on other people and watching my children grow up and not be mobile or well enough to be there with them as their mum sharing in their experiences participating in a normal family life. I feel I have already missed out on so much ... enough is enough!!

 

Yes it's sad as I know I will never be the old ME again but I've accepted this is a new ME and I'm going to work hard and fight to get back as much mobility as possible!!  I am very lucky to have two brilliant supportive trainers one I have been with for over 10 years Alison Kemp and she has helped me get through my many tough challenging changing mobility issues and also a Neuro Physio Neil Heppel who I have now been seeing for almost a year and now attend his Gym for my training sessions.  These are both funded by myself as unfortunately I get no  help with funding in my rehabilitation. Yes the NHS is brilliant and has helped me in the past when I had more mobility and I could walk but to enable me to access the right help now both practical and financial all training and equipment to aid my rehab so far has been very limited and has to be funded by myself.   I don't want to be in this position as we was a hard working family both my partner and I worked fulltime for many years until my health deteriorated and unfortunately work was not a choice any more for either of us.

So if you've read this far thats bloody amazing.  Now this is where you can help me in my MS rehab if you'd like to? If you'd like to donate any amount of money or your support that would be so brilliant thank you so much it will be greatly appreciated.   Its going to be a slow, hard fight but I promise you I will be giving my 100% commitment.

 

With your financial help and support we can kick MS's butt together!! We can so look forward to the future, watching the new Lisa, the new ME improve my quality of life and getting back what MS has robbed me of.  I have my goals of walking and more mobility that would be an amazing achievement though I need help and support in achieving this.

 

I will of course update regularly so you can all see how your donation is helping me, and you can also follow me on my Facebook page "Lisa's MS Diary"

 

I sincerely am very grateful and a great big hug of appreciation and thanks from me and all my family

 

Lisa

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