Neuro visit over for another 9 months!

Everyday living
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Saw a completely different person today - one I’d never seen before. (The appointment letter does say you may get your neuro, or anyone on the team).

So having got myself all worried sick about what happens when he finds out I haven’t reduced the Baclofen as instructed, it didn’t even crop up.

Confessed to the new lady I’d made no serious attempt to cut down, but she didn’t seem bothered, and said she thought Dr. C. (my regular neuro) had only been concerned it might be contributing to my fatigue. I explained I’d discussed this with my GP, and that she’s been able to check my notes and confirm I’d complained of fatigue well before I ever started Baclofen, so in my mind, there was no connection. New lady said she was OK with that, and that if I’m happy with the dose I’m on, she doesn’t intend to change anything - so all that worry for nothing!

And she DID listen a bit more about the musculo-skeletal pain and joint problems, and wasn’t quite so dismissive about them. She stressed (which I fully accept) that MS does not directly cause them. I think we all know that, don’t we? But she didn’t go so far as to say it was “unrelated” and did acknowledge my theory that changes in muscle-tone are putting more strain on my joints. That’s not quite the same as claiming it’s unrelated. So overall, I felt I got on a bit better for seeing someone different, and didn’t come out feeling like a naughty schoolgirl for refusing to reduce my Baclofen. Yay! Result!

While I was in there, I also made an enquiry about something I’ve long put off, which was DIY help for people living alone with MS. Yes, the charity that does it is still running, and yes, I should qualify. Under the scheme, you pay only for materials, and not for labour.

I’ve never really felt right about asking for charity before, but it’s exclusive to people living alone with MS (not disabled people generally), so I’m exactly the type of person it was set up to help. And since I lost my job, it’s less and less likely I’m going to hire professionals, so I’ve got a form to list everything that needs doing, and apply to have it done. It won’t all get done at once, of course, and if I put ten things, they may ask for the top priority two, but I could maybe get the front path repaired, which is starting to become a trip hazard, and get the exterior paintwork done. So it’s probably been worth my hospital visit today, even though I got really sick about going.

Don’t have to go again for another nine months, so next one will be July!

Feeling a bit better.

Tina

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Hi T, glad thats over for you. But I thought everyone agreed that baclofen is a med which can to be self adjusted..........no? So I didnt think you commited any med crime in disobeying your neuro.

And as you say, it was worth going to the appointment just to get that valuable info on house repair help.

luv Pollx

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Hi Poll,

I’m quite happy with the self-regulation regime, and so is my GP. But my neuro thought I was on too much. I think he thinks my spasticity is not very bad, but that’s probably because the Baclofen is working! I did consider reducing my dose this morning, so he could see for himself what it’s like if I don’t treat it it properly - but I didn’t think it was worth living with the consequences all day (increased pain, and much impaired walking), just to prove a point, so I took the usual two pills. Which was just as well, as I didn’t see him, and my cries of: “See how much worse I am when I do what you said!” would all have been wasted. The different neuro didn’t seem to think I was on an excessive dose at all.

And my doctor had already said to take no notice of the neuro who wants me to cut down. So I’d been caught in the middle a bit, with the neuro saying: “I want you to cut down these”, and the GP rolling her eyes, and saying: “Just ignore him!”

So it CAN make a difference who you see. I didn’t have any of this “Cut down!” nonsense this time. Well pleased.

Tina

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I remember your post re the Baclofen,

I’m so glad you kept with it rather than have the misery of pain just to keep some numpty happy.

Good on your gp for looking back as proof. I think we pmd about my gp just saying play about with it but above 60mg I want to know as it would mean something was changing.

Brilliant news about the charity. What I would say is think long and hard about what is important to you. If you are mainly housebound wouldnt you prefer something you will be looking at all day rather than the neighbours to be done first.? I understand the path but are you being houseproud with painting the outside?

joint pain was a thread on here not long ago. I do accept the way I now walk will be stressing my leg joints,but no one to date can explain why so many of us have very stiff painful hands. If I have missed the cure other than Baclofen Gabapentin and amitriptyline, I’m not sure which one helps I am happy to hot foot to the gp and beg for some.

So glad you had a good neuro meeting as maybe you wont get stressed before the next one.

Pip

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Hi Tina

Glad your appointment went well, and it sounds like you are someone

who can benefit from the charity, you go for it.

Take care

Pam x

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Hi Tina , sounds like that went well, it sounds to me like common sense has won the day in regards to the baclofen. I can understand why you would be worred before your appointment, I would have been exactly the same. Well done on the DIY front too, that was well worth asking about and as you say, sounds ideally suited to yourself, living on your own, with ms. …and you don’t have to go again for 9 months. Cheryl:-)

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Thanks all, yeah, I’m glad I didn’t try to make do on rationed Baclofen, just on an arbitrary decision that it’s causing my tiredness - which I don’t think has ever been true.

The DIY works - no, I’m not housebound at all, and don’t give a monkeys what neighbours think The reason for wanting the exterior work done as a priority is I’m worried ALL the windows will need replacing (which I can’t afford), if it’s not attended to soon. Plus the path needs fixing, as it’s a trip hazard. First and foremost to me, as I’m the person who uses it most. But I don’t want the postie to break his leg and sue me, as I can’t afford that either. So I think the outside is the priority.

Interior decorating I can take or leave. A friend and her husband offered to do it, but so far never have. I was quite relieved, as I wasn’t really looking forward to the disruption, so haven’t gone out of my way to remind them. For some reason I find it exhausting having work done in the house, even if it’s not me doing it. I suppose I’m just not used to having people in, and the extra hassle.

A friend who doesn’t have MS said much the same. She lives by herself, and was left almost traumatised by having someone in to do the bathroom. She did get what she wanted in the end, but found it all very stressful. I think this is common, when you’re used to being on your own.

Tina

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Great news about the Baclofen. Is ths charity accessed nationally and what us it’s name? Details? Not for myself, but I know friends who need help. Thanks. R

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Hi there R, no it’s a small, local initiative, I’m afraid. Unless your friend happens to be in the Bristol/S. Gloucestershire area, they won’t be able to help. It doesn’t seem such a radical idea there wouldn’t be others like it elsewhere in the country, though. Maybe worth a bit of research?

I first found out about this one by Googling. The details looked as if they hadn’t been updated in quite some time, and it crossed my mind the charity might well be defunct. But the contact person was at the MS clinic I go to periodically anyway, so when I was up there yesterday for my appt, I asked if it was still running, and they said yes, and handed me an application form. There were also a lot of other notices and leaflets up there, about services and facilities I wouldn’t otherwise know about - some NHS, some voluntary.

It’s always worth having a browse of the info rack at the hospital, because you don’t know what you might find that nobody’s ever bothered telling you. I haven’t called on any of it before - and still might not for a while yet. But it’s interesting just how much stuff there is, that nobody ever tells you. If you don’t make a point of looking, you’d never find out.

Tina

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Hi again. Some years ago, I spotted an article in the council newsletter, about grants for disabled/elderly homeowners. This was money to do essential repairs, when low incomes made it darn near impossible.

Someone came out and said we were just the kind of people they wanted to help. Then a council architect came to measure up, prepare drawings and costings. Yes, we were told we could definite have the jobs done. This grant didnt have to be repaid until the house was eventually sold and NO interest would be payable.

Too good to be true? Yes, we waited and waited and then were finally told the money had run out and the scheme was no longer in place.Bummer!

luv Pollx