Long Term

Tags

diagnosis, finance, future, health, MS, TM, weight loss

What do you think about when you hear the words “long term”?

Long Term Relationship? I’ve got a few of those, the most important of which is with Simon, we’ve been together since April 2005. I’m lucky to have such an interesting and strong relationship and the “long term” part never fazed me or frightened me.

Long Term Illness? I’ve got a few of those too! Diabetes I am hoping to put into remission this time next year when I have bariatric surgery which should also normalise my blood pressure. For the Transverse Myelitis I just have to hope it doesn’t get changed to an MS diagnosis. With this “long term” was something I deeply feared and sometimes still do. It’s hard imagining growing old with these illnesses.

Long Term Loan? And yes, you’ve guessed it, I’ve got one of these too! Well, if you count the mobile phone then it’s 2 and if you count student loans then it’s… many more! And I’ll probably be adding a PhD loan to this soon as well and maybe a mortgage in the not too distant future. Who knows?

Long Term Forecast? For the weather, finances, health, we all tend to have these in our lives if only to try and plan our schedules, right?

So, what do you think of when you hear the words, “long term”?

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Dermatomes

Tags

autoimmune diseases, brain, CIS, clinically isolated syndrome, diagnosis, dx, health, lesions, MS, Multiple Sclerosis, transverse myelitis

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).

CIS – Transverse Myelitis – MS?

Tags

CIS, clinically isolated syndrome, diagnosis, dx, MS, Multiple Sclerosis, symptoms, transverse myelitis

 

So I’ve been reading up on TM, having realised it is an actual thing and not just another word on my neurologists report (whoops!) and it seems that the CIS resulted in TM, but MS might have caused the lesion. We won’t know until I relapse in a bad way, yay!

Anyhoo, I found the Transverse Myelitis website which led me to the FB group.

It has been awesome talking to all these people that are in the same boat, and I’ve even been able to give support and advice to people more in the dark than I am. I never even knew TM was a thing! And even though I have other things not related to the TM (but related to CIS, like the TN pain in my face) this is a good support group.

I am also hoping to get a dog that is trained to help the disabled. There is a long waiting list, but I am prepared to wait for such an awesome addition to my life.

Sword of Damocles

Tags

appointments, autoimmune diseases, brain, CIS, clinically isolated syndrome, depression, diagnosis, doctor, dx, GP, health, hospital, lesions, limbo, MS, Multiple Sclerosis, neurology, NHS

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*

MS or not MS?

Tags

appointments, autoimmune diseases, brain, CIS, diagnosis, dx, GP, health, hospital, MS, Multiple Sclerosis, neurology, pain

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…

Watch and Wait – Pre dx and MS

Tags

brain, diagnosis, dx, health, MRI, Multiple Sclerosis, neurology, symptoms

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.