An appointment with the Consultant

I had an appointment yesterday with my Consultant Neurologist – the first since I received my diagnosis just over 4 months ago.

The purpose of the meeting was really just for him to make sure that the things he had set in motion last year were in fact happening and to find out if my symptoms had changed at all.

Well, they have and to be honest I’m quite surprised by how much. I mentioned the problems I’d been having with my hands in recent weeks (probably about a month now) and how it is becoming harder to use them for daily activities (this is in addition to my ever-weakening arms). He had me performing some resistance tests but the strength in those muscles is fading so I didn’t do too well. I’m becoming concerned at how weak my grip is and how easy it is to wear my hands out when typing.

I was able to confirm that all the various health care professionals (Occupational Therapy, Physiotherapy, Adult Services, MND Association Visitor) were all in contact with me and that the care network was in place. At present however it’s more a series of chats with these people then anything else. I’ve yet to get into the realms of care at home.

We reviewed the monthly blood tests I’d been having for the first three months. These were needed to check that the Riluzole tablets I’d been taking were having no detrimental effect on my liver. Like my GP he was satisfied that everything was normal and told me that I could now move to a 3-monthly check for the remainder of the first year and then afterwards move to an annual check.

I asked him about the lumbar puncture procedure I’d had back in January. The reason for having it was to iron out that last element of doubt. With MND there is no test to determine that you have the disease so the only way to diagnose it is to eliminate everything else. I’d already been told back in November that he was 99% certain of the diagnosis and that he really didn’t expect the lumbar puncture test to reveal anything he didn’t already know. Sure enough all the tests came back normal which would be consistent with MND so the original diagnosis still stands.

One thing that had been puzzling me since I’d started to read up on the disease and find out that there were in fact different types of MND, was which one do I have? I already knew that it was sporadic because we have no history of it in our family. Indeed we have no neurological history that I am aware of. By far the most common one is ALS (Amyotrophic Lateral Sclerosis) but I was hoping that it might turn out to be PMA (Progressive Muscular Atrophy) as it has a longer average life expectancy. But it looks like I’m going to be a Mr Average as he feels that the data he has collected on me is consistent with ALS. Well it may only have an Average life expectancy of 2-5 years but it is important to appreciate that it is only an average. People can and do live a lot longer.

I also took the opportunity to mention the Italian clinical trial involving Lithium Carbonate and Riluzole that had generated a lot of interest in the ALS community. Bold claims were being made about slowing down the progression of the disease and I wanted a professional opinion and hopefully an endorsement to try it should the claims prove to be true. I’d taken along a copy of the science report that had been published a few months ago but was rather apprehensive about mentioning the subject for fear of being thought of as just some computer geek who thinks he can order up a cure as easy as ordering a book from Amazon! I wasn’t thinking that but having a terminal illness does create a certain desire to want to live! We owe it to ourselves to explore every opportunity and this one looked too good to pass by. Anyway he’s told me that he is going to look into it.

He’s also going to make an appointment for me to have another lung test just to make sure that I am not loosing any efficiency which would indicate that the disease had spread to the breathing muscles. I don’t really expect this to present a problem because at the moment I haven’t noticed any breathing problems whatsoever and I go walking regularly. The last lung test I’d had back in October had confirmed that my lungs were in excellent shape. So let’s hope that remains true.

He said that he is going to keep an eye on me at regular intervals and has set the next appointment for July so it looks like we’ll be having about three meetings a year – that’s in addition to the monthly meetings with my GP.


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