Forum

Relapse :(

Hi, hope everyone is keeping well.

I posted the other day about needing a stick. I decided to contact the nurse at hospital as I realised that, with each day, I was getting a little worse and if I leave it to progress there is a chance I will not be able to drive which will take away my freedom. I can cope with driving to work instead of walking but if I can’t drive then I cannot go anywhere :(.

The nurse agreed that this was a relapse and faxed over the steroid protocol to my GP yesterday ready for this morning’s urgent access surgery. I obtained a urine container in readiness and phoned just after 8.00 am today for an appointment. The receptionist booked me an appointment for 9.20 but then phoned at 8.55 to say the GP wouldn’t see me as all he would do is test my urine and either prescribe antibiotics for UTI or steroids for relapse which he could do without seeing me. I just had to drop in the urine for testing and they would sort it out. The prescription would be ready late afternoon. So … another day lost! I’m glad I decided not to wait until next week now!

It took ages to pee in the little pot as my bladder is ‘shy’ at the best of times and any extra pressure makes things worse. I drank gallons of water but could I perform? The instructions clearly say I must pee straight into the little pot and not into any other container first in case of contamination. That’s fine if you have a bladder that doesn’t care when and where it goes but mine will not void in such circumstances. When I handed it in, it was still warm and I was then running very late for work!!! (And I did notice that the surgery car park was virtually empty as was the waiting room so why couldn’t I have seen the doctor and started on the steroids this morning?!)

The GP phoned me at lunchtime to say my urine sample was clear and then asked me what were my symptoms and did I have a high temperature etc before he would write the script. If he had seen me this morning, he could have checked my bloody temperature for himself! Grrrrr!! Anyway I will get the steroids and can start on them tomorrow which will hopefully kick this relapse out of touch before it gets any worse so I suppose all is well eventually. I did at least get a follow-up appointment for later in the week to see if I am any better …

In the meantime I am picking up mum’s stick from my dad later and will start practising over the weekend. This of course meant telling dad that I am having a relapse but I am hoping I can persuade him that he should use his own stick a bit more often as he is more stubborn and proud than I am, riddled with arthritis and still hobbling about without a stick!

Tracey x

Update - this town is so backwater that both pharmacies have no stocks of steroids so I now cannot pick them up until tomorrow afternoon which means I cannot start on them until Sunday morning as I need to take them early in the day so they don’t disrupt my sleep too much. Again, if the doctor had seen me first thing this morning, the pharmacies would probably have been able to order them in for this afternoon! Norfolk is the county that got left behind in the Middle Ages!!! Grrrrr!

Tracey

Hi Tracey,

There is some kind of a national supply problem with steroids I think, and it seems to be all types, not just oral administration.

I was prescribed some eye drops with them in a few months ago, but the pharmacy could not do it. The also advised I didn’t waste my time chasing round other pharmacies, as the problem was universal, and nobody would be able to fulfil the 'scrip.

They sent me back to the doc, to get her to prescribe something else. :frowning:

Really wasn’t v. impressed at the time, as I’d had to wait two weeks to see the doc in the first place, then I couldn’t have what she prescribed me.

Hope you manage to get yours alright, and that they help!

Tina

x

Hi Tracey

Thought it would be worth responding to what you said about driving, as you can should still be able to drive even if your legs get weaker, thanks to the wonders of hand controls. I use a wheelchair and don’t have much strength in my legs but can happily drive. The car’s an automatic so I don’t need to worry about the clutch. I have a steering ball which is attached to the steering wheel, meaning I steer using my left hand. Then there’s a lever which is attached to the brake & accelerator pedals, and I pull it to accelerate and push to brake. They can be fitted to any car, and won’t prevent anyone else driving the car using the pedals as normal. There’s a few other types of hand control, but this is the cheapest and most basic. I had an assessment done where I got to try out a few different kinds, and I found these the easiest to use. If you google it you’ll be able to find out more.

Dan

Hi Tina

I’ve got the steroids now but I’m still not very impressed as they weren’t ready and the pharmacist insisted on seeing the protocol for them which my GP had asked the receptionists to hand to me entitled Guidelines for GPs Multiple Sclerosis - Oral Steroid Administration. He said he had had to query the dosage with the GP as it was an unusual dosage and had been told I had been given this document with the prescription. I said I had but had assumed it was for my personal use and no-one had told me it had to be kept with the prescription as it just points out that I need to take the steroids after food and lists possible side-effects. This is a small town and I don’t necessarily want everyone knowing my business. I had to take a seat for 10 minutes while he prepared my prescription. Luckily there wasn’t anyone working in the pharmacy that I knew today but it could have been quite different. He was then very patronising when he came back, full of ‘you take care’ and I’m sure that’s just because he now knows what is wrong with me. I hate that …!!!

Hi Dan

Thanks for your reply. I didn’t realise you could have levers for the pedals which aren’t permanent modifications so that is very useful to know. I am hoping this is just a temporary glitch. With my biggie disabling relapse I was unable to drive for a month as I could not feel the pedals at all so I wish I had known about that at the time as I could have looked into it at the time and could have had a bit of freedom. I was stir crazy; daytime TV is rubbish and there’s only so much reading and playing on the PC I can take in a day! I’m hoping to work through this relapse as I’m not nearly as bad this time (the wonders of Rebif) and now I have the steroids I should be on the mend very soon. I may reduce my hours a bit this week (I have a very understanding boss these days) and the housework will just have to wait until I’m feeling up to it (always glad of an excuse to leave the housework).

Take care

Tracey x