Nervous re GP call...

Everyday living
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Well, as predicted, here we are, nearly lunchtime on Thursday, and still not the promised call from the GP yet, as I get more and more anxious about it.

I’ve had to be on the phone for about ten minutes, about something unrelated, and am panicking that she might have called in that exact ten minutes, and I’ve missed my chance.

She is good, and normally does ring if she says she’s going to, but I hate being confined to barracks, just waiting for it to ring. I know I’m going to jump out of my skin when it does.

It’s not as if it’s a nice day (cold, grey and rainy here), so I don’t suppose I’d have gone out for my lunchtime walk anyway. But I hate this sitting by the phone, just waiting. :frowning:

Tina

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:frowning: Xx

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How’d it go at the neuro the other day, MrsH? Or is that a wind-up just to talk about it?

T.

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No, I’m fine to talk about it…just nothing really interesting !! Just what I suspected…uhthoffs. Sometimes it just doesn’t sink in that I’m not going to get any better than this…it’s been 7 months for goodness sake and I’m still exactly the same so which tiny part of my tiny brain doesn’t get it ! I annoy and bore myself !! Xx

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I know what you mean! I think for the first year, I still treated it as if it was some rather extended bout of flu’, and one day I was going to feel better.

For those of us who’ve never before had anything that didn’t go away by itself eventually, it’s not easy to adapt to, is it?

I’m not very impressed by the “remitting” part of RRMS. Haven’t had a proper relapse - one I’m certain about - for yonks. Just feel cr*p every day, instead. I suspect it’s already 2ndry, as I reckon I’d had it years before I was diagnosed. Probably already on the turn by then.

T.

x

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Oh, I am so with you…where the hell is my remission ?? I’d had it for at least 10years before being diagnosed and with hindsight had loads of relapses and remissions but nothing is going away or even just improving this time. Any call yet ? Xx

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No, still no call…

She typically calls about midday, when she finishes morning surgery, but I’m assuming she must eat lunch sometime, so if she doesn’t call soon, I’m guessing we’ve had it for today.

I think she does housecalls or something in the afternoon (if any of them still make housecalls), so a bit unlikely then.

There’s another surgery about 4-6 p.m, I think. I hope I’m not still hanging on all the way 'til then. Not least because I usually need a sleep in the afternoons. I don’t want to get woken by the doc, and then be all flustered and confused, and not remember what I wanted to speak to her about.

T.

x

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Ring up hun and query when you’ll get the call as you were expecting it by now…might give you an idea at least then you could have a kip around it? X

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Morning Tina Did you get a call ? Xx

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Hi there,

Thank you for asking!

She finally called at 4 p.m - and, you guessed it - I was asleep. :frowning:

So not very rational or coherent, and didn’t really remember everything I was supposed to say.

Interim solution: raise the diazepam (not the baclofen). I’m cool about this, as it’s a drug I know, and tolerate well. I was originally prescribed it for anxiety, but it can be prescribed for spasticity in its own right, so now got the official green light to do that, as I’ve already found it works. There are the usual “addiction” worries, blah, blah, but I’ve been an intermittent diazepam user for years, and never developed any serious habit, so she was prepared to take each case on its merits, and make the judgment that I’m NOT a patient at serious risk from addiction.

Longer term, though, looks like back to the hospital for me, as she wasn’t prepared to try out something else without consulting them. She’s going to find out if I’m supposed to have an MS nurse. Reflecting on it afterwards, not 100% happy about that, as getting to the hospital is harder than getting to the doctor’s. I think, if everything has to be managed from the hospital, it makes me less likely to seek help for day-to-day issues, because I don’t drive, and since losing my job, don’t have money for taxis everywhere. I can’t keep “popping up” to the hospital, every time anything needs tweaking.

I really think I’m going to end up on Gabapentin or Pregabalin anyway (the ones I’ve so far been resisting), but I’m hoping that if the hospital give the initial go-ahead, it can go back to being managed by the local surgery, as before. So watch this space!

Doctor reckoned she will call me back next week about what’s supposed to happen. But then it’s Easter, and if I need a hospital appointment, I’m guessing it’ll be the standard 12-week wait. So I suppose I might be on some new drugs in Summer some time?

Just had to order a whole new load of Baclofen, which is wasteful, if I might be quitting them, but as there’s no date on the horizon, I had to err on the side of caution, and re-order anyway. Even though they’re no longer very effective, I know you can’t quit cold turkey, so I can’t risk being left without any, but still no alternative in place.

T.

x

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So good and bad… Xx

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Yeah, bit mixed, really. Interim solution is one I can live with - and with proper GP endorsement, I won’t feel guilty I’m using diazepam inappropriately. But still nothing fixed for the long term, and no idea when it will be.

Tina

x

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Hopefully sooner, rather than later :(( Xx

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Hi Tina, glad your gp called and you are sorted for now. I share your reservations about the ms nurse situation and the possible tiresome visits to the hospital. I find the nurses pretty useless tbh, mine tries everything to get me to go and see her every six months, even though the consultant originally said to go yearly. It is only when I say I will check with him about going in every six months that she backs down and lets me see her yearly! But what I wanted to ask is if you have ever tried zanaflax (tizanidine). I tried that when baclofen didn’t do much for me. Sadly I was too sleepy on zanaflax to take it long term which is a shame because it did actually help me a bit. Just asking because my gp just gave me a prescription for it without referring me back to the hospital. That was many years ago so perhaps things have changed now. Cheryl:-)

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Hi, I have tried baclofen and tizanidine. Neither did anything for the stiffness I have. Tbh the baclofen acted like a sleeping tablet and the tizanidine was like a pre-med you get before surgery. I have a neuro appointment on Monday and I am going to ask if there is anythng else I can try.

Moyna xxx

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Thanks Cheryl and Moyna!

MS nurses seem about as divisive as Marmite. I must admit having been put off by some of the stories here, about never being able to get hold of them, or when you do, them being pretty useless, or sometimes just plain wrong (a few people have been told very odd things).

The trouble is that even if they are good, I don’t think I will use them if it’s all the way to hospital every time. I am still OK with public transport at the moment, though I have to brace myself for the ordeal! But in future years, I don’t think I’m going to be OK to stand around at bus stops in all weathers. I’ve already come home from the hospital in a distressed state on one occasion, because I had to wait more than an hour for the bus, and got very cold. It had been light when I left the appointment, but during the hour I was waiting, night fell, and the temperature plummeted.

As for the meds themselves - I’ve had a good run on Baclofen, which I’ve been on for about two years. At first, it worked very well, and I’ve never had any noticeable side-effects. Tolerance is apparently not a major problem, which is one of the things that makes it a favourite to prescribe. So I suppose the truth about it not working must be that I’ve got worse. Not really a huge surprise, in two years, even in the absence of obvious relapses.

I’ve never tried tizanidine - I do think that’s one of the alternatives that may be explored, although my neuro has always been keen to get me on gabapentin, which I don’t think is primarily indicated for spasticity, although it may have some effect. They seem quite insistent that I MUST have nerve pain, even though I don’t believe I really do. I suppose everyone has different thresholds for what they consider pain. I get pins and needles in my hands at night, which I don’t really consider painful, so I don’t really want to take drugs aimed mainly at symptoms that don’t trouble me.

T.

x

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Hi Tina Ah I wondered why you were avoiding gabapentin but that makes sense now. I am on gabapentine for my right hand and arm pain but I am not sure it helps with the spacisity either. I think with the ms nurse it sounds like it can be a lottery as to whether you get a good one, going on other people’s experiences. It can take a few days for mine to get in touch, mainly because of size of area she has to cover. However she does make house visits if you can’t get there…so it could be worth seeing what the service is like in your area. I am not due to see my neurologist again (unless things change badly) but she contacts her to discuss my meds etc if needed. Anyway just a thought …hope it helps : ) Mish xxx

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Thanks Mish,

Well, to tell the truth, I’m a bit concerned about the widely-reported side-effect of weight gain, too.

It’s not just vanity (although, of course, morale and self-image are important, when you don’t feel well) - but I have worked soooo hard to lose weight and keep it off, as I reckoned the extra weight must be making me more tired, as well as exacerbating all the aches and pains.

I’m about a stone lighter at the moment, than I was a couple of years ago, and although I’m not obsessive about it, could still do with losing a little bit more. So the last thing I want to do is take a drug that starts piling it all back on again - especially if it’s mainly aimed at symptoms I don’t really have.

I know not everybody gets this side-effect, but it seems common enough that it’s a very real concern. I don’t want to have done all this weight loss for nothing; it wasn’t easy!

T.

x

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Ooh I know what you mean. I lost a over two and a half stone two years ago, by going to gym and calorie counting. I am battling to stop it creeping back at the moment…half a stone has already crept back. I am fairly sure in my case it’s not the gabapentine. For me it’s lack of exercise and my old snacking habits! Doh! Ah well, trying my best but Easter is going to be really hard. I am not sure I could manage gym now if I let it get away from me. My knees feel like they are going to give way some days without any extra bending It can make you feel so low when you weigh more than you want. Mish x