Two weeks ago I was back in hospital to have more tests and to take part in #msfuture. MS future is a clinical study that takes newly diagnosed MS patients that have not yet started medication and takes tests at the beginning of their journey and then repeats the tests after one year.
The results of this study will not help me. However, if the scientists and doctors performing the trial can use the results to identify what is different in the way MS sufferers biologically and chemically present then it could help them find ways to manage (or even help prevent) the condition in the future. I am number 153 in the Scotland-wide study. For those that don’t know, Scotland has one of the highest levels of MS in the world! I found out at 45 I was affected, so it can happen to any person or one of their loved ones at any time. That’s not meant to scare, it’s a reality and one that I wasn’t aware of until about 6 weeks ago. Life can be brutal and beautiful at the same time. Yet, remarkably few people choose to take part in these trials. I know it can’t help me, but maybe it can help my niece, my cousin, my friend, my colleague or a complete stranger in the future. And all it took was my time, a bit of blood and a couple of cognitive tests.
I can totally understand why people choose not to take part. Dealing with the diagnosis is enough to handle. Yet, the condition won’t just go away. I feel like I’m giving back in some way. I don’t want anyone else, let alone a relative or friend, to feel the way I’m feeling right now. It took a few hours and life is sacred and time is precious. I’d rather spend time helping a future sufferer than moping about my own situation.
All that said, I’m no saint and I am human, so when I went back to hospital last week for an appointment with the neuro-opthomologist to determine if I would need specialist equipment and if my vision was holding steady, the news I got floored me. Again.
The appointment I had was with the neuro-opthomologist, yet he chose not to see me, instead he sent “a colleague”. At first I thought maybe he was sick and not in the hospital that day until I found out he was actually in the consulting room next door and his “colleague” kept going to him and asking his opinion on certain things. I could even hear him telling his “colleague” what to ask and about what my responses had been! Surely it would have been far quicker and less likely to introduce error if the man had just chosen to be in the room with me?! Even if his “colleague” still did all the the testing and talking.
After he had picked up all the lenses he had dropped on the floor while examining my eyes, “colleague” then told me that they still didn’t fully believe that my visual problems are MS-related and in fact could be a completely different issue. I was shocked, floored, upset and confused. Hadn’t I waited months for them to rule out other conditions while I waited for the MS diagnosis? Are they now telling me that I don’t have MS or are they telling me that I do have MS but I also could have another condition. He wouldn’t be drawn on that question. By that I mean, he just didn’t know. It was at that point I shut down. I couldn’t take this in. He was telling me, I think, the condition that it could be but I can’t recall what that is. If there was a chance it was an eye condition that presents in a similar way to MS, but isn’t NMO, then why the heck didn’t they do these tests while I was being tested for everything else??? I don’t understand that. I mean they tested me for virtually everything under the sun, but not that?? I can’t help but think that if this neuro-opthomologist had seen me months ago when he was first asked to, then this might not be happening. Then I wouldn’t have been lulled into the false sense of security of an MS diagnosis. I feel like I’m back to square one. It’s probably MS, but it might be something else instead of, or as well as.
My experience of the NHS til this point has been wonderful. The nurses, the doctors, the consultants (one notable exception) have been exceptional. Then this. I was first sent for more blood tests, to a nurse who couldn’t have cared less. My blood was leaking out of me slowly and she obviously couldn’t be bothered to wait until the final vial was filled and she just decided “I suppose that will be enough”. If that amount is “enough” then why is the vial not that small??? No answer, just a shrug. Obviously 2 more minutes of her time, was too precious than the potential of me having to go back and have yet more blood taken. She then sent me on my way to go for a chest X-ray (the reason for this X-ray, is still not clear to me, but in trying to be fair to “colleague” he probably did tell me, he just didn’t appreciate that I’d shut down). Her directions were, “right, left, right and then go along the huge long corridor, then ask someone else. Needless to say I got lost. Several times. Eventually an orderly took pity on me and walked me to where I needed to be. Thank you kind stranger.
At the X-ray department the extraordinary staff of the NHS I’m used to, reappeared. Smiley, friendly, courteous, understanding and sympathetic. Yay. After a few attempts at the X-ray, accompanied with an explanation of why there was a few attempts, a few giggles and detailed instructions of how to leave(!), I went home. Gutted. Confused. In tears on the bus. Fearful of my future yet again.
I wanted pizza. A message saying as much to Daniel my PT, gently convinced me otherwise. Again I have to thank Edinburgh Fitness Solutions for not only helping me turn my physical life around, but supporting me through my mental and emotional anguish.
The tears continued for a while and eventually stopped and the resignation to this situation appeared. All I can do is focus on what I can control in terms of my health and fitness. Friends say the doctors are only trying to do the best by me and make sure that the diagnosis I have is the best one. On some level, I get that and am grateful for it. What I don’t understand is why it’s happening now and not months ago when I was going through all the other tests. Why have they waited until I’m about to embark on a pretty brutal drug regimen alongside my epilepsy control to decide to introduce this new complication. Why didn’t the so-called expert first see me when he was supposed to and secondly even deign to be in the same room as me?
I’m scared. Again. I’m confused. Again. I’m deflated and I’m worried. I want answers. I need answers. I deserve answers.
But, I don’t want pizza.