Hello everybody, not been here for a long time. Life with this condition has its ups and a lot of downs but I’m pleased to say I’ve had some work done which has helped a lot. I’ve had the builders in and now have a wet room so I can now shower safely and a ramp built out front so I don’t need to use the steps anymore. This has been an absolute God send. Symptom wise, I am always in pain, especially my legs and fatigued to the hilt. However, the latest and weirdest symptom is that I’ve started having involuntary movements. My legs, feet and hands will jerk, sometimes quite violently! Tut…I dunno… I’m now on pregablin rather than gabapentine, amongst other medication. Also been on vitamin D supplement for the last three months as a blood test showed I was deficient. Got to go for another blood test next week. Well, that’s about it. Family life is good and I got another puppy 5 months ago. A beautiful miniature labradoodle called Ruby. A great friend for my other dog Ozzy and an absolute delight for me 
Keep smiling everybody!!! Vinnygirl xx
Hi Vinny, Congrats on the new Wet Room & easy access ramp. I’ hope to change our double unit shower room to a wet room soon…just gotta get hubby to agree to get professional people in.
The jerks of limbs happen to me. They remind me of a type of dream where I step off a kerb into nothingness then wake up, relieved I was dreaming. The limb jerking is part of MS as are the shakes & trembling hands, Not nice, but it’s one of the symptoms I actually laugh at. Ruby sounds fab & a pal for Ozzy.
Pregabalin helped my neuro pain a lot, but…a side effect for weight gain of 3 stone! Had to change after a while and then lost just over 3 stone. GP changed meds to opiate based controlled drug & pain is now controlled.
Keep smiling hon, Chrissie x
Hi Chrissie, cheers for the reply Got to agree about laughing at the jerky movements, apart from when my mobile phone takes a leap for freedom when my hand goes on one! Haha! Hey thanks for the info about pregablin causing weight gain. I’ve put on nearly 2 stone since I’ve been on it but didn’t know why. Now I do! You say you’re on opiate based meds now. Do you drive? If so are you still able to with opiate meds? Vinnygirl xx
Hi Vinnie,
I know what you mean about the wetroom. The first shower I had in two years; I didn’t want to get out.
As for the spasms; it’s a good excuse for not bothering with a shave. But I hope that’s not an issue for you.
Anthony
Hi Vinny, I tried pregabalin for heel nerve pain. But like you I gained weight rapidly and I also had a feeling of sadness, which isnt me.
So I weaned off the drug and have no heel pain relief. I have to keep my heels propped off the bed on a pillow. The pillow height decreases as the night goes on and I am always having to alter my feet…or get hubby and carers to do it for me, as I find it difficult to do myself.
But too much elevation and my spc stops draining…cant win really, can we? We have to take the lesser of 2 (or more) evils!
I take 75mg of amitriptyline a night for nerve pain in thighs, and bum cheeks…it works well.
I get some jerks in my feet, but not enough to cause alarm. I know when they will move as I get a slightly painful, prickly sensation in my leg, which follows through with a foot or toe jerk.
Glad you have a wet room now. Had my installed about 2.5 years ago…it`s lovely.
I did get an OT to assess me for it and she said I was an urgent case and would be fast tracked…huh! That turned out well, as I enquired when the work would be done a year after the OT had put her report in and was told I was number 161 on their list!!! I was hoping for a DFG to help pay for it.
I ended up getting a bank loan for £7,500 and will be paying it off in another 4 years!
pollxx
Blimey Poll that was a lot of money to find! I was lucky that I could get a grant from the council via my OT for the wet room and ramp. I actually only enquired about a safety rail for the outside steps! We had to pay £2500 towards the work but it’s been well worth it and thankfully we were able to get a loan. Meds wise, I take 30mg amitriptyline at night but it doesn’t stop the pain completely ( that would be heaven) but does help me to relax. I take baclofen too. It makes me wonder if they’re clashing with one another. Wish there was a pill out there that could do the lot all in one!! 
take care, vinnygirl xx
Ah Anthony, bearded & moustachioed wouldn’t be any problem on a man, though electric razors are safer than the cut throat razor (now a comeback at salons charging £50 + per shave). We females use cream to keep legs smooth (nah, don’t think about it). Worst thing with tremor & jumps? Throwing peas off my fork, landing on someone’s plate, nearly fell off the chair as we laughed.
Vinny, DVLA medics fully revoked my licence & refused me a trial test, said based on MRI & other evidence. My gp appealed but dvla said 'opinions can’t be used, only medical evidence". Only 4 months before, I’d bought a brand new convertible. I cried so much when I sold it.
Amitriptyline: I went to max dose & one night I had a destructive sleepwalking episode. Took pics of the damage to my MS nurse & after tests, she weaned me off Amitriptyline.
No dmd’s for ppms, so just have to manage symptoms. Totally agree your fab idea of 1 tablet & cure all. Told 1 of my brothers, he said an Arsenic pill. His bruises should clear up soon
Poll, is there any chance of you sending the receipt to OT/Soc.Ser/MP - you “only” bought it based on an OTs recommendation to maintain personal hygiene and not for any other reason. Not your fault if they can’t conduct their Duty of Care in time. Ludicrous!
Chrissie x
Hi Vinnie & Chrissie,
I believe that a single pill, for all possible symptoms, was invented by one Dr Jekyll. However there were side effects.
Anthony (stubbly, but still looking good).
No Chrissie hun, its done now and I can’t do with fighting for it.
But I do believe the debt may have offset care charges I was recently quizzed on. They were going to make me liable for a contribution towards my care coats. I told them about my wet room story and they waived the charge.
Pollx
Nice one Ant. I want that pill. Or did I already take it, not sure, it may only take effect now and then.
Sue
You lot have made me chuckle…especially Chrissies referral to peas flying everywhere off a fork. Lol…!! I’m the same…so embarrassing, especially in a restaurant. My grown kids are like “can she do it, can she do it??? Awww, epic fail” when they don’t reach the target Hahaha. Where shaving is concerned it’s an electric shaver all the way. I’d end up with multiple stab wounds using a razor:Denise My MS is secondary progressive so dmds weren’t an option for me either. Don’t want to lose my licence so I’ll stick with the pregablin and the body of a God…shame it’s a Budder but we can’t have everything in life. Take care y’all. Vinnygirl xxx
Damn you auto correct…it was a laughing face not the word ‘Denise’!! :-0
Don’t worry. Boudica has care coats. In this weather?
I wondered what the chuff Anthony was on about…me and my care coats…just checked my wording…duh!
pollx
Do you wear the coats in the wet room, just in case you get wet?
S x
No, I use a brolly!
Oh that’s alright then, I was bothered about you getting soggy.
Too late for me. Had to call a specialist firm from Holland.
Big Al.
What you on about?
Pollx
Couldn’t you just use a towel?