Today felt a little bit like a new beginning as I visited the Walton Centre in Liverpool to seek a second opinion on my condition and to be honest, I had no hopes of anything fruitful coming out of today.
First lets recap on why I want a second opinion. Basically, I felt let down by my consultant Neurologist Dr Nicholson as this year, I have had terrible trouble communicating with him and he has not kept my GP informed of my progress and test results. Also, previously, I had private medical care through BUPA and although originally it was part of my employment package, as I changed jobs and my condition progressed, I stumped up the membership from my own pocket. I did this as I thought that I would get the best care and doctors to help me but recently I found out that any Neurological disorder that is diagnosed (and remember that I dont have a diagnosis right now) is not covered by the scheme. So as a second reason, I wanted to start again on the NHS.
I am by no means a snob but to drop out of BUPA to the NHS seemed a little daunting to me and I am happy to report that I am nothing short of amazed by the service I received today.
Anyway, firstly I was given a consultation with a Professor Young.....look her up, she is big in the world of Neurology so I was quite flattered to be in her presence and I was surprised at just how much time she spent talking to me. We went over my progression from day 1 and identified key areas of the development of my symptom. She discussed thins that I was happy with and she also discussed things that are far too personal and not for the blog but every time she hit the nail on head with her analysis of my condition. She was a no nonsense character, not much fun, very serious but I felt a sense of interest in helping me and that came across in very large waves time and time again.
We are talking about MS here as its the most likely outcome of my symptoms but she is far more cautious about the diagnosis than anyone I have spoken to previously.
Her classification of the disease falls into 2 parts. First you must have multiple symptoms (multiplicity) and you also have to have multiplicity in a certain time period. The more time that passes between recurring symptoms the better. I have spoken about this on the blog in the early days.
She identifies that the demyelination of my spinal cord is one symptom and she also identifies that problems with my sight are another symptom (these 2 could provide the multiplicity she refers to).
Now referring to my sight is a new one. Previously, I have spoken in depth with my optician and I have had evoked visual potential tests at the Walton Centre to identify problems but until now it has drawn a blank and the nice thing about Prof Young is that she believes me when I state that there is something wrong with my vision. Everyone else has discounted it.
The clinic today was a "one stop shop" so after seeing Prof Young, I took a bladder test and another eye test.
The bladder test is all about identifying problems around my waterworks and lower regions. I have had a lot of problems in this area including numbness. I had a test that shows that my bladder does not empty completely when I go for a tiddle and this is common in an MS case. Severe problems that people may experience is incontinence and thankfully I am far from this as we speak and I am still in good control of my toilet!!!
The second test, the eye test, confirmed what I have been saying for a long time. I do have problems with my eyes. I have a problem identifying contrasting colours in dark conditions. This marks a deterioration in my eyesight although again, thankfully, it may not be connected. My left eye constantly compensates for a lazy right eye that should have been corrected in my youth so because my left eye is doing the job of 2 eyes, it exaggerates small changes in my vision. However, it should not be discounted that this is not related.
So today felt like a fresh start. I have a follow up in 2 months with Prof Young again and at this point, they will have analysed all that happened today along with various scans and test results that she did not have access to today.
As another bit of help, she has prescribed another drug to me to help with my numb hands. The drug is Carbamazepine and I will start taking it next week. She assures me that we can control this and eventually, it may disappear of its own accord. All fingers that aren't numb are crossed!!!
So I sit here hopeful of progress.
To end on a depressing note though, I am quite shaken by the experience of being surrounded by a clinic full of MS and other Neuro related patients. Through no fault of my own I found myself surrounded by a trio of people who were discussing their various conditions. It was quite obvious that these people were quite deeply affected by their conditions and I got a general feeling that hope was missing from their lives. To sit there laughing about the fact that they only had death to look forward to without a care for those they would leave behind has had a uncomfortable affect on me. It shook me up that someday I might be in their shoes and its a vision of the future that I cant handle right now and I am not ready too either. I was actually the fittest person in that clinic today and I have a lot to be thankful for. I can move around without aid and although my emotional foundations have been shaken to the core in the last couple of years, I remain positive. and for that, I am thankful.