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Physio

I got referred for physio by my neurologist and after 3 home visits I think she is ready to discharge me, I do the exercises she gave me but they do not help my balance my stiffness either, also neurologist wants me to have a bladder scan and they also going to come out to house after Christmas, neuro won’t give me LDN he says most msers swear by it but he doesn’t tnink it helps.

Ms nurse not contacted me they was suppose to in September and still nothing, so only meds I am on are vesicare and Pregabalin what’s most people take in mg for Pregabalin vesicare is helping me so happy with that, only diagnosed September and I know I need meds for spasms and stiffness and don’t see neuro for 4 months.

I live with my mum and daughter and brother and could use a bigger place I can manage stairs with extra rails, can’t manage to get out of bath it’s like I have no strength to pull myself up and I don’t think my mum understands PPMS, but I don’t leave house except for hospital appointments, the stiffness is the worse makes my balance even worse.

any advice is appreciated thanks x

Sorry you are having a difficult time at the moment. Have you rang your MS nurse? She will be able to advise on medication for spasms and stiffness, if you can’t get hold of her speak to your GP you really shouldn’t have to wait for symptomatic medication.

Physio should be able to refer you to occ therapy who in turn will be able to advise and supply aids to help you bathing and getting about. Things are different in all postcodes so someone else may be able to suggest other things. Ask your physio he/she should advise regarding all these things.

My brain moved out so I’m not much help till it moves back in

Best wishes

Jan x

Alysea

I have found most neurologist don’t rate LDN, but if yours says he has good reviews why does he not say try it.

I have been on it for nine years , would not say it was a miracle cure, however for me it helps recovery from fatigue, and i cant tolerate the other MS meds. I have an understanding gp who has prescribed it for me, however another lady i know with ms the same gp will not prescribe it . Maybe i am a pain. I was discussing with her how peoples’ attitude change to you when you start using a stick or walker, her answer to me was they must be brave treating you in this way, so as i said maybe a bit of a pain.

You can get LDN privately , also Linda Elsegood is a good source of information regarding it.I also go to a small MS charity the team there are wonderful, but again they cannot promote it, however they have said in a few occasions someone wants to try it can they call you and i say yes, information is key and afraid regarding medication it is research and knowing your own body that can help

trish

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Ms nurse haha yeah she was suppose to contact me in September and I am still waiting for her I am going on baclofen when she gets around to ringing me, I wanted LDN for my bladder but I am on vesicare and it helps but I still need a bladder scan, I am very disabled right now don’t do much walking as I don’t feel safe crossing roads as my eye sight is a problem too.

physio is great she gave me crutches and a shower seat neuro refered me for a OT and Ms nurse still bloody waiting I phoned social services to put in for disabled facilities grant so on waiting list, how far usually can you walk with aids with PPMS I tend to not go out unless I’m going hospital just don’t feel safe.

did any of you have stiff legs/tightness omg 17 months now it’s driving me mad I want it gone and exercises don’t help it, I am trying to stay positive but it came on suddenly within a year no symptoms before and I’m only in my 30s and in my eyes PPMS is the worse one cause it restricts what we can do, how do you manage with housework etc.

I try to help out but bending and doing hoovering/ironing is just not possible trying to stay positive but if any of you live alone how do you manage do you manage stairs? Sorry for all questions I didn’t post for a while but now I just want to be able to do things like I used to got a daughter that helps me but I don’t want to have to relie on people but as I can’t get her to school and back I have to they are great for doing that.

Is there anything for fatique this feels like it’s getting worse omg I am so tired LOL

thanks lady’s and gents xx

Hi Alysea I’m not going to confuffle anyone by talking meds but know of some of your situation. I dont have an ms nurse, not discrediting them but when the neuro said its ppms, nothing i can do but i’ll see you in six months, it appears pointless to seek them for guidance. Like yourself my walking is laughable,i either use crutches or a rollator with seat, al depending on day. Fatigue I’ll het upand try to movee about followed by a non sponsored ice bucket challenge. I’m not good on advice but trial and error is my medical method and treat each symptoms individually, not everything can be blamed om ms. I’ve yried to maintain a network of positive pps around me and take eberydsy as oy comes. I habe ppms but i WILL live forever lol, high target but if you don’t believe, life will become very dull. Not much use my adbice but if it doesn’t help, at least you continue to try.

Well I had a bladder scan and it was full and I’m sure vesicare causing me not to empty it so nurse told me to stop taking it and it seems to have worked, I don’t leave house unless I go hospital I am not safe, after months of no falls guess what I stood up and went to sit in chair that was like right next to me and right leg just gave way and ended up on floor first fall for like 5 months but didn’t hurt myself so I’m ok lol.

ms nurses are usually quick but I’ve been waiting months I am also progressive he’s not said properly just as I’ve been like this over a year with no sign of relapse is a poor prognoses, my gp said its progressive but I knew that even before tests came back positive, so stiffness I find is worse affects my back to and spasms are a pain.

one other thing, eyes are sore now is this a sign of my uveitis or fatique and is there any medication that can help? Physio says I’ve got muscles and not lost them considering I don’t do much walking then why are my legs still giving way eyes so sore so I need to rest and backache started, I’m on Pregabalin 300mg per day what’s most I can have?

Thank you xx