Forum

GUYS I NEED GUIDANCE

GUYS FIRST EXCUME MY TYPING IN CAPITALS BUT I HAVE OPTIC NEURITIS IN RIGHT EYE AND NUMBERED GLASSES ON LEFT -3.5 CYLINDRICAL

I WAS DIAGNOSED WITH PPMS IN 2002 ; HAD AN ATTACK IN 2004 WHICH AFFECTED VISION IN RIGHT EYE [ TOTAL BLIND RESTORED TO SOME EXTENT WITH TIMELY STEROID INJECTIONS IN RIGHT EYE

WAS WALKING NORMALLY TILL 2005 ; BED RIDDEN IN 2006 DUE TO BED SORES IN SEAT

WHEELCHAIR IN 2007 AND FINALLY COMPLETELY BED RIDDEN IN 2012

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MY QUESTION NOW

I AM TAKING “FOLIC ACID” + “MECOBAL TABLETS” + "VITAMIN B C

OMPLEX [B12] + “ATORVASTATIN” RIGHT NOW

APART FROM THIS I AM ALSO DOING 2 LB WEIGHTS TO STRENGTHEN MY UPPER BODY

WAIST AND ABOVE BODY HAS BEEN OK SO FAR

I NEED SUGGESTIONS ON HOW TO WORK ON MY LEGS AND BALANCE SO I CAN RETURN TO USING BASIC WHEELCHAIR FOR NOW AND LATER INCREASING STRENGTH TO ATTEMPT TO STAND

Hya, don’t think I’ve seen you on here before… so welcome to the board…

Well you have had a very rough ride and I think you’re doing incredibly well hanging in there and improving things as much as possible.

Have you had physiotherapy? I would think that would be your best bet in improving legs and balance. I had it once a week for 6 weeks… in my own home… essentially to improve my balance and the exercises and tips I was given are still of use to me.

Go and see your GP and ask for a referral. Your neuro or MS nurse can also do the referral.

I also suggest you look into a drug called Low Dose Naltrexone… or LDN. This is a drug that is very difficult to get through a GP or neuro as it has not had all the NICE tests for MS… however many people find it really improves their MS symptoms and given the amount of problems you are dealing with I suggest you look into it.

Look at the website ‘The LDN Trust’. If you decide to go for it you will probably have to buy it privately on internet (the site will give you all that info) and it’s quite affordable.

I’m not taking it as my PPMS is very slow progressing and I don’t want to mess around with it… but in your shoes I would definitely think about it.

Good luck… and come back and let us know how you’re doing.

Pat x

Sorry it’s ‘The LDN RESEARCH Trust’… Pat x

Hi,

I would definitely ask for a referral to physio as a first step, they will show you the correct exercises for you.

Welcome to the forum and all the best

Pam x

Hi and welcome, I would definitely ask for physio - I had my first session this morning and it lasted for an hour and 20 minutes. I could not recommend it enough, she’s given me a load of exercises and stretches (she’s going to write them down for me too) a lesson in how to use my stick properly, a pair of crutches and a recommendation for some medication from my GP. Altogether, I feel like I’ve got a lot of hard work to do BUT I feel like I can a bit more control of my legs and balance. I aslo take LDN and have noticed a lot of benefits :slight_smile: Good luck! Sonia x

My MS nurse got me refered into hospital for two weeks rehab after a spell of a couple of month in bed it got me out of bed and into a wheelchair so maybe that is something you could see about? Welcome to the board and good luck. Don

Hi, I have been a full time wheelie user for 9 years.

i was still standing for loo transfers until about 2 months ago.

In July I had a suprapubic catheter fitted, which meant I was doing less transfers to loo.

After a couple of weeks, my legs were unable to hold me up and after a few near falls and painful ankle/knee pains, i am no longer able to weight bear at all.

So whilst I am thrilled that you are so intent on getting mobile again, I am wondering if it is possible after a long time.

I would be very interested to know how you go on and wish you the best of luck.

I would advise you engage the help of a physio.

luv Pollx

And as we said to you at the time Poll… when you were told it wasn’t MS… don’t you even DARE to think about leaving us!!!

Pat x

Okay this is my update now

I started working weights 2 lb and 6 lb weights to get upper body strong enough , also started playing around on the bed like a 1 year old for physio

trying to sit cross legged and lifting weights above head to work spine and balance

sit on side of bed and lift body on arms

Hi, I’m glad to hear you’ve been exercising, how are you feeling? Hopefully a little stronger and a bit more in control :slight_smile:

Sonia x

Hi, it takes guts and sheer determination to do what you are doing.

Keep safe, yeh?

pollx

A question for you…

can you tell me what got you thinking like this after being bed ridden?

Pollx

the term “muscle wasting” ; if not used the muscle gets wasted.

why should i let ms waste me, i will fight.

That’s the spirit! Sonia x