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I was naively hoping for the best

So last year I had a brain MRI and and emg/ncs. Test came back normal so I was referred back to GP. I convinced myself all would be OK. Kept a positive attitude. Until now!! Yet again it’s at this time of year . I’m getting worse. So much worse. I genuinely cannot count how many times my leg has given way and I have landed on the floor. Ithe includes 3 times whilst at work yesterday. Went to GP on Monday I have been referred to orthopedic. Went to out of hours today to see if there was ANY help whatsoever to stop me dropping to the floor between now and the appointment in 4-6 weeks. Told to go to £1 shop and get a knee support. I did and I must admit it has helped a little but I’m still so unstable and falling. My son has picked me up too many times now. Any advice from anyone who suffers this. . It’s horrendous! I have work tomorrow although I have managed to pass my shift on Tuesday to someone else it’s not something I can do regularly. I honestly have never in my life phoned in sick or given a shift that I was allocated away but I’m dangerous and i fear it’s going to be one fall too many if I don’t fix this. .

Hi saltypie,

Alright, it may seem like taking a sledgehammer to crack a nut but never be worried about temporarily using a wheelchair.

Get in touch with Access to Work Get support in work if you have a disability or health condition (Access to Work) - GOV.UK lots of help available.

I presume you employer has tried to make ‘reasonable adjustments’ to help you. If you contact the Disabled Law Service Multiple Sclerosis Legal Advice Line | Disability Law Service they will be able to help you with the legalities of what you’re allowed.

George

Hi, did you have SSEP tests on your leg? What about one of those flexible fibreglass ski pole things; more lightweight and I think they retract telescopically and more modern.

Hi

I just had a quick scan through some of your posts from 6 ish months ago. You were talking then about FND as your MRI etc were negative.

Perhaps you could contact the neurologist you saw last year (cut the GP out perhaps?) and see if you can get another appointment? Or talk to your GP about whether the orthopaedic referral is as appropriate as a neurology referral?

George and Bob have suggested options for walking aids, I’m going to suggest a different one - a crutch. You may find that such an aid will stop you hitting the floor when your leg gives way under you. It provides a bit more support than a stick or pole and you can get one either from the NHS (which could take a while!) or just buy a cheap one. You could try that on line website that sells everything (rhymes with Jamathon!).

I do hope your new symptom gets better and you don’t get any others.

Sue

I will have a look at aids to help me. Wheelchair is out of the question as my house and job wouldn’t allow however a stick/crutch I am going to get. . It’s not a new symptom it’s the original symptom which had me referred in the first place it’s just got worse this time around. He said if brain MRI came back normal I will have FND which I was more than happy to accept. Even wished for since there is hope that it can be fixed. Thing is I have done everything I’m supposed to. Stayed positive. Kept active. Changed diet. Taking supplements. Vit d is low so just doubled intake and getting in the sun as much as possible. I have limited family medical history as my parents passed when me and my sister were really young. But my mum used to collapse a lot. She was type 1 diabetic though and walked with a stick. Passed at 29 yr old with acute pneumonia. FND is what I believed I had however I think it was a bias diagnosis now. Looking back at the appointment he diagnosed before he did test as he saw I had childhood trauma. I am most definitely over what happened. I’m a believer it’s made me who I am and I would have taken a different path and not had my son who is my world. No regrets. Obviously miss them but I have deablt with everything years ago. I will have a look around at walking aids anyway thank you. From past experience it will ease off soon anyway x

Update Since I wrote this I ended up taking myself to A&E to see if there was anything they could do to help me keep upright at least until my appointment with orthapeodics. I was full of cuts and bruises from all the falling. They gave me a knee brace and crutches! Absolutely amazing! I managed to keep on working and keep on top of my mum duties! That was a few days after this post. . I have had the appointment on friday although it was with musculoskeletal department (not sure if they are one and the same) they did the usual test. . I DEFINITELY noticed a difference in how the test was conducted. Much slower and gentle. Not rushed as with the neurologist. . The consultant got his senior in the room after he had done his examination and he sat for a good while explaining things to me. Again absolutely amazing to be treated as a person not a mannequin. He concluded I have muscle wastage on my right side and he is sending me for a full spine mri and made the appointment there and then for next monday. I’m not saying I’m any closer to ANY diagnosis and to be honest he didn’t say what he was looking for, but I figured I would update on the progress to say how happy I am with the way I was treated in the appointment and how the aids I received have kept me walking. So if anyone else is having problems with keeping upright I fully recommend a full knee brace (quite large) and maybe a crutch. (I use one or the other now) as it gave me back my self respect and stopped the humiliation of falling in the street and having my son pick me up! :slight_smile:

hi saltypie

what a good doctor you have seen!

pity your neuro can’t be as helpful.

and thank you for talking about your knee brace, i have one that i bought years ago for a dodgy knee.

going to dig it out and try it because i often feel that my knee is going to give way.

thanks

carole x

That sounds like a “good” result in that you saw a decent doc and got diagnised. The muscle wastage will explain the collapsing leg.

MRI should rule out or high light many things, so I’d say thats progress.

You can also buy nicer looking crutches from a variety of places on the Internet. Different colours and slightly less institutional looking than the NHS ones. If you’re likely to be using crutches for some time to come it might be worth getting something that is a bit more attractive. I had a purple pair, and a friend has several different colours to suit what he’s wearing!! Prices vary so look around and see what you can get.

Sue