Transverse Myelitis & Me, With A New Addition!

Well Wednesday 14th September was the day I had my appointment with a consultant I’d never heard of. A consultant whose speciality is Multiple Sclerosis. After being told time and again by my lead consultant that we wouldn’t be getting any sort of diagnosis other than TM, I was wary as to what this doctor was going to say.

Paul and my mum came with me to University Hospital Southampton Regional Neurological Unit and when I was called through they gave me a reassuring squeeze and in we went. 

I have to say he has to be one of the nicest doctors I have ever met, and I’ve met a few over the years!!

He let us get comfy and asked how I was feeling. He was so kind and caring and I felt at ease so more able to ask questions without worrying I was being stupid. 

He asked if I had any new symptoms and went on to explain that yes I do have Multiple Sclerosis. I choked up a bit which sounds daft seeing as we’d all come to the conclusion that I had it. 

He seemed baffled as to why I hadn’t been diagnosed before now. Paul explained how many times we were fobbed off by my other consultant and that it had left me feeling more confused and kind of like been left hanging.

The doctor then said that it is clear as day that I have Relapse-Remitting Multiple Sclerosis and all my scans and tests showed this. 

He pulled up my most recent MRI scan from june, which covered my brain and my spine. You can clearly see the lesions at C3 and T1 on my spinal cord which is my Transverse Myelitis. Then he showed me my brain. Paul did the typical male joke of ‘oh you found your brain then’!!! Dr Furby then explained which we active and inactive lesions in my brain. I have 3 subcortical white matter lesions and a handful of others dotted through my brain. 

There has been permanent damage caused by these lesions and he said that they won’t get any better. 

So on to the next step. I am going to have to go  to am information session that is held by the specialist nurses and will discuss the pros and cons of the main front line drugs that I will have to start taking. 

These drugs are immunosuppressive and some are also immunoaltering. They will help my body to keep a distance between relapses and help my body recover from them as well. They will make me poorly and more susceptible to picking up bugs that are floating around. We totally forgot to mention that Lewis has colonised Pseudomonas, rota virus and adenovirus so when we saw his consultants later in the week we mentioned it and they all said they’d deal with it when we come to it!

So here the new path of my journey starts. I’ve got to learn many new things and deal with so much more than I already did. I’ll hold my head high (as best I can!!)  and tackle this head on. 

I need to be strong for my boys and my husband, especially days like today when, having over excreted myself going to watch Adams karate lesson, I have ended up feeling like a dead weight, struggling to see straight and hold anything in my hands. 

I need to accept what’s happened 

Can I ask you all a favour – don’t be scared of coming to talk to me and ask questions. I know it’s daunting but please don’t pity me. Ask questions but listen, properly listen to the answers.

I’m just as scared as you are, I’m only human. 

Please join me on my journey and walk with me side by side (I wouldn’t suggest in front of me I’ll run you over!!) 

The information below is copied for the MSTrust.org.uk website one of the many sites I’m doing research from.

Oh well off to bed I go. Need to rest these weary bones.

What is multiple sclerosis?

Multiple sclerosis (MS) is a lifelong condition that affects the central nervous system (the brain and spinal cord).

MS affects different people in different ways. In any one person, the symptoms can vary from day to day. It is not fatal and most people with MS live about as long as everyone else.

There is a wide range of possible symptoms. Some of the most common for people who are newly diagnosed are fatigue (a kind of exhaustion), stumbling more than before, unusual feelings in the skin (such as pins and needles or numbness), slowed thinking or problems with eyesight.

Not everyone experiences all of them