Not Diagnosed yet but going through it after a year of a gp who didn’t listen to me i changed and now seeing a ms specialist my walking is bad i don’t leave house unless i go hospital or gp and my dad takes me my walking is that bad and have foot drop i am a danger to myself i would’nt dare risk going out in street i fell just getting up to go ladies room and bruised myself i have had these symptoms for over a year now.
I don’t think my walking or balance will improve but my mum is convinced i will walk normal again i don’t think i will not being negative and maybe walking will get easier but she thinks the nerves will heal themself with meds and treatment i post it here because you guys have been diagnosed and know more about it then myself my mri showed inflammation and i’m being booked in for a VEP and LP in the near future thats all my neurologist said in letter maybe he will book to see me soon or i’m not sure.
I see my eye specialist on monday so ill see if he says anything although i think he will discharge me as he wasen’t sure what was causing my problems he just said a auto immune condition any advice will be appriciated.
Alysea I cant say anything thatt will be of comfort but I was diagnosed twenty odd years ago and whilst its not been easy it has been interesting. Untill you get your diagnosis try not to worry there is all sorts of stuff to worry about not least how England will get on tonight. When you get the tests done maybe they will give you a diagnosis straight away ask for it and hop-efully they will. Sorry i cant help more but if you are unsteady on your feet use a stick its to help you from falling and not a badge that says I am ill dont ever look upon aides as badges for others to judge you by they are for you not for them. and a
I am off to watch the football keep us updated and please if you ever want to ask something do come on to the board we have all been there cried and smiled life goes on just in a different way
Good luck with your appointment tomorrow. Have you had MRI’s yet and triedtaking a course of steroids? Hope you get some answers soon
Good luck with your appointment, let us know how you get on.
Don has given you good advice, using sticks will help with your balance, and are just a useful tool to make your life a little easier.
Got letter from neuro which says your MRI shows some signs of inflammation so I think we should go ahead with further tests which we discussed vep test and a LP in the near future that’s all it said and a letter with infomation of the procedure.
Forgot to mention I’ve been using borrowed crutches for a year now without them I would be stuck, I don’t walk that far no more then 50 metres if I push further then that foot drop prevents me from lifting legs and stiff legs for a year don’t help stiffness never goes not even with exercises I tried exercises physio gave me when she thought I had osteoarthritis nothing helps it. I’m ok have family who help me with my daughter just want a diagnoses.
Good luck with your appointment Alysea. My MRI’s didn’t give me a diagnosis either, it took an LP. They’re not the nightmare procedures people talk about. I can understand the need for a dx, it’s so difficult. You’re very lucky to have a supportive family. Oh and I agree, crutches and sticks are a Godsend.
Good luck Alysea, and I hear you re walking/balance.
I now just accept my slow gait and propensity to trip/fall/scrape/bruise etc etc as a sad fact of life. Lets me appreciate the things I CAN still do OK.
Focus on the positive and all that. Bit of a cliche, but it sometimes helps.
So i went hospital today walking was bad i struggled so bad with foot drop today down hospital halls was so bad i could barely lift my left foot never been this bad before and the tingling from my legs to toes is horrible feels so strange so eye specialist won’t discharge me i tried to get discharged haha.
No luck they won’t discharge me until my vision is normal ah well was worth a try thamls for all replys.
Have you looked at the possibility of getting an Fes to help with dropped foot? www.odstockmedical.com.
Not looked at anything was waiting for dx before I go down treatment road I don’t do much walking just in house and hospital so it’s not so bad how we’ll does it work don’t want to try something that is only helpful short term. Thanks.
The fes helps with dropped foot and not something specifically for MS, so no harm in asking your GP to arrange an assessment. I have been using one for well over ten years and definitely not a short term solution.
Had a look thanks doesn’t look like they cover my area I’m in north west it’s the stiffness in my legs that prevents me lifting it I actually don’t have problems with feet besides tingling. Thanks.
I was just diagnosed in November last year after switching GPs. Had a big fight but got there in the end.
I was similar to you, my walking was terrible, I fell all the time and I have foot drop too. Whilst the damage hasn’t necessarily healed, it is amazing what physio cann do for you. You will get a splint or AFO to help with the foot drop, this keeps your foot in an upright position so you don’t trip over it. Once you have one of thse, you willn find it much easier to walk.
Whilst they may not be abe to heal the nerve damage, there is a lot available to help you manage these issues and return the smile to your face.
Stay strng and hopeful!
My balance is major issue I have with walking and pain in my knees if I stand for more than 20 minutes I just hope I can walk ok after physio but most I read on here are in wheelchairs that’s not something I want I’m only 34 Just would be nice to take my daughter places again 2 year ago I was fine now I’m house bound for the moment I was going to get a scooter to get me out of house but my mum is like wait for dx she’s helped but she still expects me to do normal things even though she knows I can’t
My scooter is a godsend! It is definitely worth the investment.
Have yku thought about a delta walker? Really helps with my balance as it supports both arms and allows the freedom of movement. Once you have a splintand physio, the walker will really help you practice walking again. You can get ones with a seat so you can rest on it when your kneew get sore.
I am 29 and thoughtnI was heading for a wheelchair but after physio, my hope was restored. Stay hopeful, there is a lot that can be done!
I’m another fan of physio. I hoped it would simply slow down the deterioration in my walking but it is helping me walk better - bonus! My physio gave me exercises to do at home daily: he tailored the exercises he set to my abilities so that I am challenged but not at risk of falling and hurting myself while doing them. He monitors my progress regularly and has changed my routine once to add new challenge.
My problem is no physio until diagnosed and I’m guessing LP gonna be not until end of July/August so still some time to wait I still have falls once every few months terrible back pain tabs not helping yet. My bladder issues not good worse now if I drink too much eating healthy and lots of water need a downstairs toilet I can cope with bladder it would worry me more if I was out for along time any meds that can help this? It’s like I empty it but am hour later I need to go again cause it wasn’t emptied completely. When I drink lots it does empty don’t want to have to go bladder clinic etc once dx if meds can help oh and anything to help bloating had it a year now and doesn’t go argh so many problems getting me annoyed was fine this time last year
Alysea you seem to be having it though at the moment. Please phone your gp surgery and get them to refer you to the continence team urgently, you don’t need a dx. Keep a diary for three days with time, intake (everything you drink) and output (measure all urine, but a cheap plastic 1 litre jug). Use a page per day. That means when you see the nurses you’re already one step ahead and skip an appointment stage. Not emptying your bladder really affects your confidence and quality of life but more importantly leaves you vulnerable to infection as urine is just sitting in your bladder. It’s not life threatening but very uncomfortable and totally unnecessary. You can also stretch your bladder as I have and it’s easily sorted out. The nurses taught me to catheterise myself and it’s been the best thing ever. I can sleep through the night and go out when I want (as long as the rest of my body works obviously). And it’s not difficult.
Please don’t suffer in silence, there is help available, and surely you can get a physio appointment without a dx too, you need to talk to your gp and make them see what your life is like. You’ll cost the nhs a lot more money if you fall and break bones! Take care.
That doesn’t sound nice and hoping I don’t need that and I not had any accidents so I can handle it for time being, it’s like it’s all coming on fast a year ago I was fine rather just take tablets to be honest don’t like the idea of a tube in me really I don’t leave house yet so I’m ok for a while people having it years I can understand having to do that but I can sleep through ok without having to empty it just thinking about it is making me feel down