Common sense at last :-)

Everyday living
1

Went to see GP yesterday as my left leg is now playing up and I thought I may be compensating for the right leg which is still a bit weak following the relapse which started in March. He disagreed as I have a new patch of numbness on left foot and similar feelings of cramp in the calf when I walk over 30m or so and he thinks this may be the start of a new relapse. It soon became apparent though that he knows very little about MS and I felt he was using me as a learning curve. At least he did examine me - when I had the relapse in March, the GP at that time held a telephone consultation with me and asked me to drop a urine sample in then prescribed the steroids. This GP wanted to give me steroids again even though my leg hasn’t seized up it is just a bit uncomfortable. He decided to fax my neuro for advice and to ask if he should prescribe steroids. What I really wanted was a referral for physio.

Luckily, yesterday I had phoned Addenbrooke’s anyway to chase up my routine appointment which is due in August as they hadn’t made me one when I was there in February. The receptionist phoned me back this morning and said they were trialling a new system so she made me an appointment for August. This is one time I don’t want to miss seeing my neuro a I have had a relapse. I mentioned to her that a letter is on its way from GP but that I didn’t ask for steroids, what I really want is some physio. She agreed that physio would be more beneficial and is going to talk to the nurses and see what they can do. I wish I had phoned them instead yesterday as I’m sure they will agree with me. They know I manage my condition well and they are never keen to prescribe steroids unless the relapse is severe.

Fingers crossed.

Tracey x

2

Hi Tracey,

Good call!

I don’t want steroids unless a relapse is “severe”, either - which, in my book, would mean can’t walk or can’t see. So far, touch wood, neither of those has happened, so I’ve managed to avoid them altogether.

I reckon the neuro probably wouldn’t have gone along with it anyway. As you say, they’re less keen to dole out steroids for every attack now, and prefer to keep them in reserve for the really bad stuff.

And even if you were prescribed them, you don’t have to go through with it, if you decide you’re better just gritting your teeth and getting on with it. No evidence steroids affect the extent of recovery - just the speed. If they’re not going to have any long-term influence one way or the other, I’d just as soon skip them.

Hope the physio helps!

Tina

x

3

That’s an excellent result Tracey, really pleased for you, hope it helps.

Go direct in future, cut out the middle-man!

Laura x

4

That’s an excellent result Tracey, really pleased for you, hope it helps.

Go direct in future, cut out the middle-man!

Laura x

5

Hi Tina

Hope I get the referral first. My budget is a bit tight as I work for local authority so no pay rise for 3 years now and as I’m at the bottom of the heap anyway I was never a high income earner in the first place :frowning: Like you, I’m on my own. My 19 year old son could only find part-time work so isn’t able to contribute fully to the costs of keeping house.

I have a choice between yoga and bingo - one is good for physical health and one is good for girlie gossip and the chance to win cash!! The yoga classes have gone up in price recently and tbh I can only keep up with the very basic moves and found I had to sit out the more demanding postures or anything requiring a sense of balance. I’m loathe to pay for a class where I can’t participate fully. That makes me sound so tight but I have to be so careful with my money these days, I can’t keep dipping into my savings just to stay afloat.

I’m glad I got the chance to explain to Addenbrooke’s that I didn’t want the steroids as I’m fairly sure the neuro wouldn’t be keen to dole them out again so soon. I didn’t want him to think it was my idea!!

I seem to remember that when you wanted more pain relief a little while back you were offered physio. What is it about GPs not listening to us properly?! We know our condition better than anyone …

Tracey x

6

Hi again Tracey,

Yeah, the classes (Pilates, Yoga, any of it) are very expensive - I’ve looked into it before, but never ended up going. It’s not just cost (although that’s a major factor for me), but as a non-driver, I need them to be either local, or an easy bus-trip, too, otherwise I’m never going to have the motivation to stick with it, if transport is always a problem.

A leaflet came through about Falun Gong the other day. After initially thinking: “That’s an odd name for a Chinese restaurant!”, I realised it was not, in fact, yet another takeaway menu, but a flier for the spiritual/physical practice. It looked as if it might be beneficial for MS, in the same way as yoga or pilates, so I was interested enough to find out where the classes actually were. Needless to say, not round here. The best of a bad lot was a trip into town on Sunday mornings, but Sundays are the worst day, transport-wise. I couldn’t even go to church very easily, when I worked out what would be involved - could only pick a church that wouldn’t be one I really wanted, or not the time of service that I wanted. It’s dismal!

Anyway, yes, you’ve got a good memory - I had the opposite problem to you, of wanting meds, but getting physio foisted on me instead - which I never wanted. To be fair, that was the MS nurse, not the GP.

Physio didn’t help at all (they couldn’t really explain why I was having the problem, and the exercises - which I’d tried many times before anyway - achieved nothing). In the end, my doctor prescribed quinine, which I was hesitant to take, due to the somewhat scary list of side-effects. But eventually, I bit the bullet, and did take them. They haven’t been a miracle, but I do think, on average, I’ve been slightly better, even though I dropped the exercises altogether. I thought at first I was no better, but then noticed I was getting through the painkillers at a slower rate, and hadn’t reordered any for a long time. So if I’m saying I’m “the same”, but in fact on fewer painkillers, that’s an improvement, isn’t it?

Quinine wouldn’t have been the drug of choice, that I’d been going to ask for (I was going to give in, and ask for gabapentin or pregabalin, that I’d rejected in the past). However, I think it might be doing something.

Even though I didn’t describe the pain as “cramp”, I did describe it as “cramp-like”, and it looks as if I may have been onto something, as anti-cramp med quinine seems to have at least some effect. Since I started taking it, I also haven’t had to leap out of bed in a cold sweat, because, in my sleep, I forgot I had MS, and did a stretch that triggered toe-to-groin cramp. It didn’t happen all the time anyway, but I think it’s probably no coincidence that, since the quinine, it hasn’t happened at all. Wishing I’d been more assertive about wanting/needing medication in the first place, and not being fobbed off with physio. Even that was a compromise, as all I was offered initially, was “coffee and a chat”.

No, sorry, I’m not going to hopital for a damn coffee - I want treatment, not a bit of psychological hand-holding. When will they learn I don’t report a problem unless it’s bad? I’m not looking for “There, there” and a pat on the head.

T.

x

7

I’m glad the quinine is helping. I did drink tonic water for a while, even though I don’t particularly like the taste, as my cramp wasn’t really severe and it did make it occur less frequently. That’s another reason for avoiding yoga actually - try not to get embarrassed when every week a particular movement sets off cramp in your feet and you drop to the floor trying not to swear!! That was another posture I had to give up :slight_smile:

Like you, I never go to the doctor or ring my nurse unless I have a medical poblem that is worrying me and I cannot sort it out myself. I see the same people in the surgery every time I’m there and I wonder if they get the same short thrift that I feel I get? Maybe I should become more familiar with my GP, maybe that’s the key to him understanding MS better and treating me as a patient better? Sorry that’s not gonna happen - I have a life. It’s way too full of better things to do than sit in the surgery with a load of OAPs discussing their latest ailment like it’s some kind of competition.

Tracey x

8

Just realised - someone said I have a **good memory **Happy Days. Can I print off that sentence and pin on my wall to cheer me up on the bad days?

T x

9

Just realised, Tina said I have a good memory!

Can I print that sentence off and pin on my wall to cheer myself up on the bad days?! :smiley:

T x

10

Result!! Have a referral to physio. My nurse at Addenbrooke’s gave me a number to self refer. It turned out to be the local nurse who answered that number as it is the clinic at King’s Lynn and she did say the nurse should have sent a referral really but has sent the referral anyway when I told her what the problem is. She agreed that my GP isn’t much use …

The downside is that there is a long waiting list so I may still end up seeing the neuro before the physio. The nurse at Addenbrooke’s was hoping that I would have some physio before August so that they could assess the damage properly and see how the relapse has affected me but hey ho!

My nurse also said I could try printing off a page from MSS or MS Trust re neuropathic painkillers and taking that along to GP to ask for gabapentin. She is going to write to him when his letter eventually reaches them but that may all take some time. She felt that if I took along some info from a trusted website he may have a bit more idea of what to do … ha ha!

In the meantime I have a DVD on its way from the MS Trust and I will have a go at some of the exercises on there.

Tracey x

11

Hi Tracey, just read you have got the dvd coming!! I got mine the other day and hoping to give it a go tomorrow!! At least it can be done in the comfort of our own homes and not have to tire ourselves travelling anywhere!!!

Hope they can get you physio soon!!!

Im taking gabapentin and it really helps!! ( along with baclofen, prochlorperazine, co-codamol, tramadol, and modafinil and an anti-inflammatory!!( think im rattling now))

Kate x x

12

hi tracey

i was really into yoga and went to a class 3 times a week.

but, as you say, cramp made it very uncomfortable and disruptive for the others.

worse still was the downward dog pose (which i used to enjoy) caused my blood pressure to drop

i’ve since learned that i have postural hypo tension.

so since then i just limp along to the gym but i hate it.

the ms therapy centres run classes. T’ai chi, yoga, pilated, feldenkreiss so i really should go there

carole x

13

Kate - my DVD arrived yesterday but there’s so much typing for the evening job I haven’t had a chance to put it on yet. I wish I had as I was awake at 2am with awful backache and achy legs. Maybe the quack was right and it is another relapse. I knew exactly where the lesion was in March because of the back pain :frowning: Who needs MRIs? I also know that exercising the back does help - that was the great thing about yoga. It also helped my legs so I’m definitely going to try exercise before any more drugs. I feel like my parents already - mum used to lay out the tablets with breakfast and dad does the same. I’m fast heading that way and I don’t like it!

Carole - Luckily my BP has always been normal but it’s my balance that used to let me down. I used to be a bit giddy every time we stood up again and I had to do it so slowly I felt like I was holding everyone up, ha ha! And some of the poses need a lot of balance. My instructor said I could have a chair to help but I would have been the only one and some in the class were 20 years older than me and could manage better. It just gets a bit embarrassing. At least if the physio comes to my house, nobody else will see how bad I am at things. Once I get my balance back a bit I may try yoga again but not while things are this bad :s. I don’t think we have a therapy centre nearby. I think the nearest one is at least an hour’s drive away which isn’t very practical. The joys of living in a rural area :slight_smile:

Tracey x