This is SUCH a fantastic video I HAD to share it!
If the video does not play for you try my timeline post on facebook: click here
In the C5 area of the spine I have a lesion that was initially CIS, caused TM and may be caused by MS (or anything autoimmune really… they don’t know and might never know).
I know, it’s slightly dramatic but after being discharged from the neurologist I worried for a moment that I was back in Limbo. Instead I rather feel like that sword is hanging over me, and that at any time I might relapse and the MRI shows MS. HOWEVER, I can now at least move on with my life as someone with CIS, deal with my current “stable” symptoms and hope that I never relapse! With the LP last year having shown limited signs of demylination they are fairly sure the current lesion is caused by demylination, but whether that is a result of MS or a one off cannot be determined at this time, so their procedure for CIS patients is to discharge, keep the file open for a few years and be referred back to the same neurologist if I relapse.
So now I just have to come to terms with this disability… Is that all? I am going to go to counselling and I hope the mood swings and whatnot can be dealt with. The pain and the limitations and other things are kinda depressing, but I am open to psychotherapy, why would I have a psychology degree if I wasn’t?
I am going to keep blogging about my illness because I know how much better I feel when I read similar blogs and articles – it makes me feel less alone and when you are sick you often feel isolated and abandoned, even if you are surrounded by people and taken care of.
Thank you to all the staff at the Walton Centre in Liverpool for all their kindness and great work, it is an excellent example of the NHS at its best! Also my thanks to Dr Laura Fratalia who has taken care of me and diagnosed me – I meant what I said when you discharged me, I hope we never see each other again! 😛 I feel sorry for my GP who now has to manage it all, but that is what they are for in the UK, the centre of our healthcare and the ones who refer us. Hopefully all my new surgery needs to do in keep my pain under control.
*crosses fingers and toes and everything*
Those of you in the same limbo know how it feels to have the relapsing and remission that defines MS, to have the symptoms of it, for all your doctors to treat you as if you have it, but to have to wait for that A&E visit or MRI or LP that confirms it.
I have CIS – except it is not “clinically isolated” anymore, but that’s ok. I get all the treatment I need – except the injection – and I am getting help from my government so I can live in a good manner as a disabled person.
However, sometimes I think I’d be better off diagnosed – but perhaps that is mostly down to no one knowing what CIS is! Even the doctors! I was shocked when my Urologist knew what it meant, but then he was working at a private hospital. The junior dentists told me they had googled it after I left consultation over my erupting wisdom teeth. In the end I always say, “It’s CIS, which is a pre-cursor for MS… so I have a high chance of developing it… in the next fives years….” It’s complicated!
I felt sorry for my GP today. We moved recently so changed surgeries and the paperwork that came with me…well, you can imagine! Piles of paperwork for two years of illness! I felt so guilty in keeping so many others in the waiting room waiting, however, I needed to fix my meds and get this new doctor inducted into my case. Her surgery is the hub for all my healthcare, with the GP’s there doing new referrals and liaising with my neurologist, so I am very happy that they are all caught up and in my life. 😀
Whether or not it is MS I am very lucky to live in England. The NHS is wonderful and Liverpool has centres of medical excellence that I directly benefit from. I am in Limbo, but the waiting room is beautiful! Waiting is not so bad when you are looked after by your country, your friends and your family…
Those of you familiar with the process know how frustrating it can be. MRI after MRI, lumbar punctures, new symptoms, no sign of a second lesion in the brain stem. Yet for all intents and purposes you are living with MS. In my case it’s CIS – a condition that is a precursor for full blown MS where the sufferer has MS symptoms. I have all the specialists seeing me, plans in place, connections made, adapted housing, the works, I just don’t have that dx and might not get it for five years.
I can live with this because I understand the nature of this autoimmune disease. I was lucky enough to study neuroscience at a fantastic university (UoL). As fate would have it the very hospital I was applying for a phd at in neuroscience is now where I am a patient. My last MRI was in May and my next appointment with my neurologist is at the end of this month. I know what she is going to say. I know the lesions for my last “relapse” might not appear yet, it’s just how it is. An MRI does not show brand new lesions and she told me in April that my Trigeminal Neuralgia would not show on the MRI she booked for me – it might never show up.
Some people call MS the “invisible” or “painless” disease. I’d like them to walk a minute in my shoes and then tell me that.
Ok, so I am not old, not really – 33 is not old! – but it does get more difficult to add new skills as you grow older. Part of the problem is simply not having the time to learn and rehearse and establish the new skill. Then of course this is coupled by how our brains work. In adolescence the plasticity in our brain allows us to create new neural pathways at a faster rate, thus the act of learning is quicker (initially). While it took me a few months to get back into the swing of learning when I started college having left school ten years previously I have certainly discovered that learning new things after university is happening faster than it did beforehand.
For example, I tried to use photoshop ten years ago, and failed miserably. I had more time to learn back then and less going on in my life, but it took too long to make sense to me so I gave up. Having received PS for Christmas and having used GIMP for a year I was determined to not let the same thing happen again, and because of my brain’s active state I believe it came to me more easily.
I am absolutely loving being creative in this way. I never had the patience nor tactile talent for art and was always too clumsy and, quite frankly, rubbish to do crafts and sculpture, so digital art and manipulation has been a bit of a revelation! I have been writing since I was a child and had images in my head that I described and learned to portray with words, but there are some images that needed more than words. Now I am starting to express myself with visual art. It is wonderful to have this pathway open to me as a hobby, and I am so glad I gave PS another go!
Forget “brain training” and pick up a new hobby! That is all your neural pathways need to spark to life and give you another facet to your life. 😀
My latest creation (for my Dragon Age RPG):