Ok so I find this very hard to explain and I am hoping some of you can relate and understand what I mean.
Since a relapse last June my right leg is very weak. It is ok if I am pottering around the house. I does feel more tired than the other but it does work. It’s only when I try and “walk” properly that it goes funny. For instance, when I go out my front door, and try and walk at normal pace it goes funny. By the time I am leaving my driveway it goes very weak and this may seem a weird way to explain it but it feels like a tv channel that is not tuned in??? I know that sound crazy but thats what it feels like. If you have ever had a dead leg and it starts waking up. Before the pins and needles start it’s weak, tingly and even tickly! This is on top f the intense buzzing that starts from my waist right down my leg. It just doesnt hold me up. If I walk very slowly it can be ok for longer but not long.
Now my question is, if anyone has any idea what I am talking about…I have a member of the Physical disabilty team coming to do physio with me next week. What will they be able to do as it’s not muscle weakness. This is because of my spinal lesion so don’t know if they will be able to give me any help.
Another question is about DLA. I have applied and think I am intitled to the middle rate care BUT “should” this make me eligable for the mobility part. I’m not asking if I will get it as I know many people are turned down just if I should be. I can not go anywhere that involves walking. I can only walk around a shop with a trolly and snails pace and can not go to the park with my daughter incase she runs away.
Days that I over do things it’s far worse and when ill etc.
You are not alone, indoors I hold onto the furniture, outside I use a stick as my right leg drags behind me, I keep thinking I’m being stalked then realise it’s my own leg. I to hang on to trolleys in supermarkets but after a couple of aisles I give up and sit down, so now the shopping is done via the net.
I believe you have to be able to walk a certain distance without pain, but I’m sure someone else on here would be able to enlighten you better than I can.
Thanks janet for your reply. Well I can say my leg is painful when it goes like I have described. Just doesnt hold me up. I’m taking it from the lack of replies that I’m sounding a little crazy lol! Lindsay x
I know what you mean sorta… I have similar with my right leg. I think its ok but its like when I step forward with it… it does its own thing… aim for forwards… get sideways, aim for up, get nothing, aim for down… get accross… anyway but the direction you want. And then when u get the right direction one time, and get a little bit excited… it gives way, and you find yourself saying a little thankyou to your left leg when it thankfully manages to save you the humiliation of ending up on the floor on your face!
you will probably be given excersise to do,but these aint quick fix,they are long term daily excersises,and it will probably take a while b4 you notice any diffrence,
DLA you sound as is you should get the high element of mobility,tell them the truth,with this goverment ,u will probably not get it first time,but deffo appeal,u imo deserve it
I know exactly what you mean. I have not been dx yet. But,…I.ve tried to explain this feeling to my doc. and also the neuro. I’m not too bad indoors but when I go out walking ‘properly’…my legs play up. . . they feel like jelly…sometimes they feel like I’m walking on ‘rubber’. or they feel numb…I can feel them when I touch them…but when I’m walking they just feel like they’re not there…other times they just feel like they’re gonna give way (which is VERY scary…) esp. when you’re out alone.
My doc. thought that I was suffering from anxiety when I told him that I had trouble walking when I was out…it’s not like that at all. I don’t have problems with being outside…just walking at my usual pace…that’s when my legs play up. I’ve noticed that whatever I do…it’s much slower now.
Well I’ve had my MRI and a nerve conduction test…just got to wait for the results now…
Thank you so much for all your replies, it really does mean a lot.
I just find it so hard to explain to people. I explained it to my neuro and he just smiled and nodded in agreement. I could have cried as it was so good to have someone who knew what I meant (although im sure only from other patients).
I just don’t understand, if it’s that my brain signals are not getting where they are supposed to, how come im ok to dander about? How does my brain know the difference between this and “walking”?
I am scared stiff of getting turned down for DLA and having to go to a tribunal (sp) or have an assesment as I just can’t describe it proplerly and obviously these people will probably not have MS to understand.
As for the DLA. I do think I should get middle rate care as I can only cook dinner about twice maybe 3 times a week due to weakness in my arm and fatigue. I also need alot of help at night with the toilet as I wake up totally numb, my feet hurt and the muscle spasms in my back are a nightmare. I also can not wash my own hair anymore. I am ok with showering but my arm is too weak for my hair. My fatigue also means I sleep in my clothes many nights as I am too tired to get changed. I just hope I have written enough on my forms but if I havn’t I will join the site that is recommended (can’t remember what it’s called) and hopefully that will help. I know my doctor will support me if they write to her but if they write to my consultant I am worried he does not know enough about my daily life to comment.
Anyway, sorry for the ramble, I tend to go off on tangents quite often
I agree with Poll, yes if you are having problems with a very weak and unpredictable leg making life extremely restricting then you are entitled to mobility element of DLA. I cant remember the criteria, Im sure if you go onto the DWP website the details will be on there but I would certainly apply and get your gp and/or ms nurse to help you with your claim with letters of support. Dont forget to write how your life has changed and what you can no longer do (restricting).
Do seek help in filling in DLA forms too, best to ask the experts - DIAL or CAB or Welfare Rights. Theyre there to help you.
Thanks Bren but I have already sent my forms in. Got a letter a week ago to say they are only just dealing with my claim. I did not have any help apart from my mum. She has claimed before while on chemo so knew what she was doing. We went into great detail on how certain things affected my daily life and we alse attached every letter my doctor had with MRI, LP results and referrals etc so hop this helps. I also wrote to them adding that I am now seeing the physical disabilitly team for physio, starting DMDs and need meds at night to help with RLS and spasms.
I am prepared to be turned down but will apply again. If this happens I will get the help of CAB and the website thats recommened.
Just seen your reply Monica, must have posted at the same time
Thank you for your advice. Your right about having someone with me for an assessment as I get so tongue tied and can never find the words im looking for even when I do know what words I want .
It good to hear others saying they think I should be intitled so something as sometimes I sit and wonder if I have done the right thing applying and should I be claiming but then there are days I feel so rough I know im right.
It just scares me reading so many horror stories on here and especially when some of those people are so much worse off than I am.
Another question. Does anyone know, once the dla starts looking at your claim how long it takes. Sent forms in start of january but got a letter about a week or two ago saying they are now looking at it. Lindsay
I actually rang them yesterday (im very impatient) and asked where they were with it. They have wrote to my GP on the 5th and are waiting for her to respond. Knowing my doctor this could be a long wait. I did ring her and left a message with the receptionist that I was waiting for this just incase the letter was still sitting in a tray somewhere lol!
I also have my physio appointment this afternoon so will let you know how that goes
I have just been awarded the higher rate for mobility and the second rate for care.I have had ms since 1999 and up until 2010 had no problems over the last year I have had leg weakness balance problems, & severe fatigue which led to me not wanting to go out incase i fell over,this in turn led to anxiety and depression as i can’t do .what i used to and it’s so frustrating!.
I applied in 2011 and got refused but now my symptoms have got worse so i applied again. The ms society sent me a booklet on how to claim which is very helpful, you need to tell them how you are on your worst day.
I applied on 24th Feb and got a reply on 5th March saying they were getting in touch with my consultant, then on the 24th March I received a letter with their decission,the money was back dated to the original date i applied.
Try not to get too stressed, i know i did filling out the form and waiting for the decision but it turned out in the end. i am unable to work due to my symptoms, so the money helps alot Good luck, I hope you get awarded it, people having to deal with the everyday problems of ms, definatley deserve it.
Thanks Bev, its good to know someone has finally got what they deserve.
I am still waiting. It turns out they wrote to my doctor on the 17th January but long story short she wrote to them on Friday the 6th April. I am now waiting on a decision and hope it doesnt take to long.
