An Injection of Peace
26/04/21 14:01
Had my first post diagnosis Doctor appointment with the Neurologist at The Walton Centre last week. Went okay. It was a video appointment. You need to log in to the online Waiting Room 15 minutes early. Was in at 11am for 11.15, but doctor didn’t log in until gone 11:30. So the Waiting Room was definitely realistic. The verbal message keeps repeating like you are on an automated phone, ‘We know you are waiting. Someone will be along shortly...’ or something like that. Needless to say the longer the wait is the more you think... “Am in the right Waiting Room?” Visions of the doctor logging into another Waiting Room and thinking you haven’t turned up are inevitable.
The doctor confirmed MS - obviously - from the L.P. results. We spoke a bit about my current situation and he was happy things seemed to be stabilising and/or improving.
I’ve not blogged for a while on this so the doctor now knows more about it than any blog followers. Basically the current situation is that my legs - and particularly my feet - have been improving (not aesthetically just in terms of sending messages to my brain about things). At the start of this current situation - or relapse - my feet and legs couldn’t tell the difference if I was walking on sand, grass, or concrete. They couldn’t tell if I was walking over the knobbly concrete pavement used for blind people for instance. Now I can. The feeling in my feet is much better. As said previously the nerve-message to brain problem thing moved north and it became my torso, arms and hands that became the problem; in similar terms such as pins & needles, numbness, feeling cold and the damn MS Hug. The Hug is barely there now: when I first had it when I lay down it felt like I had a pile of hardback super tomes stacked up on me. Now it’s more like an old 2000AD comic. I can take that. The pins & needles don’t appear to be getting any worse: I can just about strum an open guitar chord. But if my fingers wander I may not notice till I’ve strum through a few discordant moments (many would say, “no change there then”).
Then we talked about medication options. Basically the two main open to me at the moment - whilst my issues not too bad - are a twice daily tablet (Dimethyl Fumarate) or a self administered injection every two days (Copaxone).
The tablets work partly by reducing the white blood cells etc and require regular blood tests: six times a year. They’re not exactly sure how the things work; let’s face it they they don’t really understand MS. The injection meanwhile comprises a synthetic myelin compound which, in theory at least, trains the blood not to attack the myelin. No regular blood testing required - and much less in the way of side effects (the relatively common side effects for the DF drugs sound much worse that’s the current issues I have).
In theory the DF reduces the relapses by up to 40% (or at least extends the time until the next one), whilst the injection is at bit less effective at approximately 33%. The side effects from the oral drugs sounded too iffy and common. Although the injection option was, well: an injection, it sounded better to me. So I’ve opted for the Copaxone route. Not on it yet but should be in the next few weeks.
There was nothing outstanding that came up in the appointment. Random unpredictability is pretty much the theme of MS. But that in itself was good; in that there were no surprise bad news packages for me.
Another thing that I may not have touched on before is that MS can affect the muscles around the bladder and basically give you less capacity. This has been the case for me, but not majorly so - and it’s not been getting worse (probably a bit better if anything). Whilst I may be bursting when I wake up I’ve not had to get up the night to go. I know plenty of people who need to get up in the night for a wee dewatering exercise who don’t suffer from MS so I can live with it.
In summary, the current relapse appears to be stabilising and indeed improving. The promise of drugs to reduce the instances is a good positive. Will get back to work imminently - but defo have an eye out for a better job.
Onwards and upwards.
The doctor confirmed MS - obviously - from the L.P. results. We spoke a bit about my current situation and he was happy things seemed to be stabilising and/or improving.
I’ve not blogged for a while on this so the doctor now knows more about it than any blog followers. Basically the current situation is that my legs - and particularly my feet - have been improving (not aesthetically just in terms of sending messages to my brain about things). At the start of this current situation - or relapse - my feet and legs couldn’t tell the difference if I was walking on sand, grass, or concrete. They couldn’t tell if I was walking over the knobbly concrete pavement used for blind people for instance. Now I can. The feeling in my feet is much better. As said previously the nerve-message to brain problem thing moved north and it became my torso, arms and hands that became the problem; in similar terms such as pins & needles, numbness, feeling cold and the damn MS Hug. The Hug is barely there now: when I first had it when I lay down it felt like I had a pile of hardback super tomes stacked up on me. Now it’s more like an old 2000AD comic. I can take that. The pins & needles don’t appear to be getting any worse: I can just about strum an open guitar chord. But if my fingers wander I may not notice till I’ve strum through a few discordant moments (many would say, “no change there then”).
Then we talked about medication options. Basically the two main open to me at the moment - whilst my issues not too bad - are a twice daily tablet (Dimethyl Fumarate) or a self administered injection every two days (Copaxone).
The tablets work partly by reducing the white blood cells etc and require regular blood tests: six times a year. They’re not exactly sure how the things work; let’s face it they they don’t really understand MS. The injection meanwhile comprises a synthetic myelin compound which, in theory at least, trains the blood not to attack the myelin. No regular blood testing required - and much less in the way of side effects (the relatively common side effects for the DF drugs sound much worse that’s the current issues I have).
In theory the DF reduces the relapses by up to 40% (or at least extends the time until the next one), whilst the injection is at bit less effective at approximately 33%. The side effects from the oral drugs sounded too iffy and common. Although the injection option was, well: an injection, it sounded better to me. So I’ve opted for the Copaxone route. Not on it yet but should be in the next few weeks.
There was nothing outstanding that came up in the appointment. Random unpredictability is pretty much the theme of MS. But that in itself was good; in that there were no surprise bad news packages for me.
Another thing that I may not have touched on before is that MS can affect the muscles around the bladder and basically give you less capacity. This has been the case for me, but not majorly so - and it’s not been getting worse (probably a bit better if anything). Whilst I may be bursting when I wake up I’ve not had to get up the night to go. I know plenty of people who need to get up in the night for a wee dewatering exercise who don’t suffer from MS so I can live with it.
In summary, the current relapse appears to be stabilising and indeed improving. The promise of drugs to reduce the instances is a good positive. Will get back to work imminently - but defo have an eye out for a better job.
Onwards and upwards.
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