Another "mini drama "in the Poppy life. … Saturday was not a good day. More slow and sluggish from the start. Barely managing to shuffle with the walker and not able to push up from the armchair or even the loo. The usual feeling of fear takes hold. Is this another level of my speedy progression? It’s getting worse, isnt it?! I’m going to be useless. Helpless! A vegetable. A burden! Feeling very low I went to bed early. Nope. Couldn’t manage that either. Call for hubby to lift my legs and straighten my body, where it had fallen back at a stupid angle. In the small hours nature called. Normally I can get up and manage alone just fine. Nope. Woke him up and he heaved my dead weight upright. As he turned for the walker, I couldn’t remain that way and flopped back on bed. Repeat as before. I couldn’t even slide my feet across the tiles. He ended up walking behind me,holding my waist and pushing my stuck heels with his feet. Left right. Left right. It took an age to get the short distance. Had to be hauled off the loo. We are drinking tea in the kitchen at 2.am when he asked was this a relapse? My head said yes as it was an identical experience to the event that lead to my diagnosis 3 years ago. However, after the first year my dx was changed from rrms to ppms due to the obvious swift progression. So how can it be a relapse? To make a very long and boring story short, ao o drive to a&e at 4am found me admitted to a ward later that day. History taken,notes reviewed and thorough physical exam doctor agreed it was a relapse. Bank holiday weekend here in Ireland. No mri functioning. My neuro not on duty until Tuesday. Mri arranged for tomorrow. Perhaps new lesions might have caused the relapse he said. So I’m just waiting. Iv steroids yesterday has seen a 95% improvement. I’m walking as my baseline, I can make a fist where fingers were curling months ago. Can you have relapse with ppms or am I actually rrms as the original dx? Any thoughts folks? I’d love to hear them.
i have heard that ppms patients can have a relapse. i think it’s called relapsing progressive. whatever it’s called i hope you make a speedy recovery.
Hi Poppy, I’m sorry you had such a rotten weekend. I have a diagnosis of PPMS but I have days where I can walk completely unaided and other times when I can barely stand up. I seems to me that we have cycles of very good periods and some that are much worse. I can’t offer any explanation but I’m sure that you’ll bounce back with a little TLC. I told you that you’re unique! Regards, Anthony
Sorry to hear about your experience and I wish you a speedy recovery and that you get some answers from your MRI.
I agree with what Carole has said as I have also heard that patients with PPMS can have a relapse it’s known as Progressing-Relapsing MS (PRMS) maybe you could Google it to get some more information.
Twinkle Toes x
I doubt steroids would be working so well unless it was RRMS/PRMS and hopefully, this will widen your treatment options. I hope you get the answers you need.
Thanks guys. I’ll be googling.
I am sorry that you have new problems. In January I woke up with less feeling in my right leg and hand. I struggled to the bathroom sat on the loo and could not stand. Finally managed to get up and reach the wash basin where my legs suddenly collapsed under me and I was unable to stand for 30 minutes. With my husbands aid and a rollator we managed to get to the bedroom. Like you I seemed to have very little trunk control and could not lift my legs onto the bed. After a few hours with my husband and the rollator helping I was able to stay on my feet and walk a short distance. It took about 36 hours before things returned to normal.
My neurologist told me it was simply that the messages along my spine were unable to get through, a temporary block! I found the experience very scary. I did not have an infection and was not poorly in any other way.
I hope you find the answers.
I have started biotin and immediately noticed better bladder control even though it is supposed to take several months to make any difference.
Well, it seems that a little uti caused the drama. My neuro saw me last night and was adamant it wasn’t a full blown relapse. My description and the fact that I had such a dramatic improvement in one dose of steroids was what assured her. I mentioned that the ward Doc said there were only the few white cells showing wouldn’t have been enough to cause this. She doesn’t like hearing what other people think! She referred to the paperwork %s and read my figures, telling me mine were signicantly above the base recommended. Plus, having seen me regularly for the past 3 years, she knows my ppms etc. Saturday was a hot day, my stress levels would be high,thinking recent breast cancer surgery and treatment and the infection all points to the relapse. So I have mri today and go home. She also gave me the go ahead for the long time booked week abroad on Friday! I was going to be going anyway regardless! Told me to get away and enjoy it. Hubby visited last night with a face like a slapped ass, telling me he wasn’t happy with going away and wanted to postpone until things settle down. You might imagine the conversation. Ahem. I phoned him and gave him the good news after she had gone. Now he’s packing.
Hi Poppy that is good news. Have a great trip. Sue x
Poppy, I had a UTI in March which made my legs completely and utterly rigid. It was horrible and very, very scary. Thankfully the antibiotics for the UTI kicked in quickly and after a couple of days the rigidity had lessened. Took me longer to get back to normal after this UTI but I got there. . I know that we can all scare ourselves to death when strange things like this happen (I certainly did) so I’m glad you got a quick answer. Enjoy the holiday. Derek
Thanks Derek. Never had this before. At good lesson learnt. I’m just going to be leaving hospital now and will be flinging clothes in a bag later today. All’s well.
UTI’s are very dangerous infections. I caught one last Christmas along with Sepsis that caused my lungs to fill up with mucus and stop me breathing. I died twice and was resuscitated by unbelievable wonderful Paramedics and Intensive Care staff.
Get them antibiotics in you and get rid of the infection.
Lots of luv
and I thought my UTI was scary! Hope all is well now.
GP has started my on low dose antibiotics permanently. Nitrofurantion alternating with trimethoprim on a monthly basis.
I hope it that this new regime keeps the UTIs at bay.
Thank you Derek,
Thankfully I’m Fan-Dabby-Dozzy now luckily. A strange conversation with Surgeon; he said I suggest you don’t die again; the third time would cause much brain damage; so I had to say never to resuscitate me.
Glad to hear that it wasn’t a full blown relapse.
Enjoy your week away
Twinkle Toes x
Morning people. One very adamant Poppy was insistent she was going abroad on holiday. It’s been a tough 6 months for us, so nothing was going to stop us. 3 days iv steroids and three days of anti biotics. (Nobody prescribed any on discharge). His lordship was very worried and unhappy about it all, and only relaxed when the neuro gave me the all clear to enjoy the holiday. Arrived at last Palmas airport Friday evening , realising the manual wheelchair we use for traveling, had a flat! No worries. There’s a bike shop in the village we’re staying. He’ll help. Saturday morning, Mr P hiked there only to find the shop closed. Out of business! Local dive centre pumped up the tyre. However, having needed to use it somewhat deflated, it would seem a new inner tube is needed. One would think we were seeking some rare and difficult quest. After a stressful Saturday afternoon, (for me. Mr p was calm and resigned) I thought to phone sol mobility in another town. Long story short, they took the offending wheel away, took a deposit and rented me a clunky manual wheelchair. Hopefully, by Tuesday at the latest, I will have my lightweight, comfortable Quickie chair back again. I found i no longer have the power in my arm to self propel. I’m not sure when this happened, as I use a power chair outdoor at home. I know Mr p will be glad to be pushing the lighter chair! I know I shouldn’t let it, but this hiccup has thrown me out of kilter. I’m an organised person and hate it when things go awry. Plus I’m a stresser, and I don’t need stress at any time. Especially on holiday!
I’m sorry you’ve been so besieged by this pseudo relapse, UTI, nasty thing. But very happy you’ve managed to get away. I hope you’re enjoying the sun and not letting the wheelchair nonsense spoil things for you and Mr P.
UTIs can indeed be very nasty (George’s experience, OMG!), but you shouldn’t have been given the steroids while you had the infection. Generally the rule is, if it looks like a relapse, have your wee tested before doing anything. Steroids on top of an existing infection can make the infection go bananas.
Self testing your wee is a good idea, I buy urinalysis test strips and test mine all the time. (Let me know if you, or anyone else wants to know how to self test.)
Have a great holiday.
I’m back! Happy, tanned and very relaxed after our week abroad. I’ve come to realise my days of sunbathing in 30c are no longer an option for me. I had to share my time under a parsol in the garden or indoors. It was wonderful to reconnect with Mr Poppy again and have a little meaningful conversation. No wondering what to cook for dinner or is there laundry that needs doing. I ended up keeping the rental chair for the week in the end. It didn’t spoil the holiday. Next time I intend to pack a spare inner tube though.
Welcome back, glad to hear that you’ve had a lovely relaxed time and that you even managed to have meaningful conversation with Mr Poppy
Twinkle Toes x
I’m so pleased you and Mr P have enjoyed your week away, wheelchair issues notwithstanding.
It’s a bugger that you can’t do heat anymore, but at least you can enjoy the sun and the company of the lovely Mr Poppy (I’m assuming he’s as lovely as you anyway!)
You’ve both deserved a holiday.