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Progression of PPMS

Hi some of you will know i have had MS since about 2000. Took until 2016 to be told it was progressive MS.

Things happened in my life and i did progress a little.

Now i am worried. First time i feel worried. I am now having issues on my right side my right leg. Yesterday it felt weird, heavy, and suddenly i would be hit by really bad nerve pain which took my breath away. this has lasted over until today. I also am limited in the last few weeks, i cant do anything. I try hard but just stooping down is hard work for me, and makes me feel weird and light headed. My pulse and oxy are all good. no temp, so this is a new thing for me. I just literally want to stay on my recliner all day.

Its hard with dog and i struggle with her which makes me feel gulty. I have only ever had left sided weakness can a true progression then make both sides weak. I have phone call from MS nurse next week so will talk to her about it as well, but would just like your take on it.

My legs feel weird too like mushy pins and needles radiates up my body.

I suppose i have had this way before 2000 it just showed itself back then with vision issues. xx

Sorry to hear this CC. I hope someone on here can help you.

I have just put a message on Everyday Living under Sueee’s missive about how we are all getting on. I meant to include yr name.

I hope you get some respite soon.

Anne

dont leave hun we need you on here. I can help support you if you need it. I get so cross as i did the testing on this new site, and i did say all the issues just like sue has and they never really listened or no one else had the same problems.

I am on facebook if you want to keep some support. xxxxx

xxxx

It’s official CC, MS is weird, bizarre, does whatsoever it feels like, whenever the h*ll it likes.

I had a weak left side for years. My left leg was always worse than the right. Then after developing right side foot drop and following badass big relapse in 2012, the right became the ‘bad leg’.

Now I’ve been unable to walk at all for 18 months, since breaking my femur, the left leg has gradually got worse and worse. Now I can actually dorsiflex my right foot better than my left.

I know my MS is the RR/SP/RP type which definitely presents differently to PP, but just an example of how *#¥]^~} infuriating the disease is.

Just lately, I’ve been finding that experiencing pain overnight/early morning, if I don’t take some heavy duty painkillers, then my legs/back/etc work less well through the following day. So I’ve been in the habit of having some asskicking pain pills in my bedside cabinet drawer (together with 10mg of Baclofen). If I wake at about 5 or 6am, I take the pain drugs. The ensuing day I can stand better to dress and transfer. I still can’t walk (I’m resigned to that) but want to retain my standing/transferring. I really don’t want to move to hoisting just yet. It’s the smallest bit of independence I have left.

Now I’ve been fighting with the doctors about pain meds. I’ve been taking (the smallest possible amount of) Oxycodone, together with paracetamol and baclofen. The GP wants me to stop taking Oxycodone. I’m resisting because the amount is so small (5mg) and the effect so useful.

Anyway, that’s my problem with progression and pain. I don’t know if it helps, or just knowing that others have similar issues…

Sue

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Holy cr*p ladies, so sorry to hear that things are not too good and that MS keeps dropping the dung from a great height. CC mentioned feelin guilty… what would you say to anyone else??? I don’t care if it is a normal/ordinary reaction, do not forget that you are extraordinary. My own fears revolve around getting problems with my right side. Currently my issues are on the left (despite being left handed - … the irony of it all) If stuff happens to my right side, doubtless I will go through the various experiences without remembering a thing I learned first time round!
I really hope that things are not too bad for either of you and that the sunshine comes back soon.
M

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I have a problem with taking medication. i was cursed with a sensitivity to most pain meds. I was also bless with a high threshold of pain.

I never knew about the first one until i was in germany and having awful pain with a miscarriage. Back then they gave you pethadine. I dont have much knowledge of what happened, all i know is what i was told i was on a trip with the drugs, saw an elephant at the end of my bed being washed by a nurse (i was saying to the nurse you will be there all day, i saw a dog with a dustbin lid on its head and they caught me trying to get out the barred window as i wanted to go to the fair ground. I was having a rare reaction to it. so anything with opiod is off my list.

HIGH PAIN threashold. I can give you an example. I fell down the stairs and landed tail down on the edge of the last step (i think). my husband and daughter heard me fall. this was prior to diagnosis and about my 3rd bad fall. anyway off to hospital, the crew were trying to put a canula in my hand i asked why they said for morphine, no thanks i wouldnt allow it. upshot is i had a fractured coxic and was back at work 2 weeks later sat on a rubber ring lol.

I saw two grandparents pass away through taking too much meds like ibrupfan etc my grandfather his stomach went and he died quickly my nan similar. I have an adverstion to meds which i cant get past i know i am totally being irrational but i have had some therpy i now will take one paracetamol. Its STUPID i know.

I wake up every night in pain, but lull myself back to sleep with one 2 mg diazepam (which is probably worse lol) and one paracetamol. One paracetamol can put me to sleep lol.

I knew this would probably come eventually i am not scared just more worried about falling and breaking something. I just didnt realise my right side would get weaker as its quite strong usually.

I think i have coviditis just been in isolation too long and lost my confidence.

@Ssssue you go through so much I admire you as your always there to help others. thank you.

and @Mogace thank you too, we are a good team. xx

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