Please help dont know what to do

Morning, this is my first time on here and im nervous. My symptoms started about 3 years ago when I lost sight in one eye for a coiple of days alone with a mega headache, ended up in hospital for 4 days having all tests known to man that all came back clear. So they put it down to migraines. Headaches would come major about once a month and then died down untill last year when I got major lower back ache with a limp, burning pain in arm along with a weird pins and needles feeling, legs felt heavy. I would have shooting pains down legs. Doctors put me on all sorts of meds and I was swimming and having massages. In end again I had a neck and lower back mri which came back clear. Symptoms passed except for sharp pains in hand now and again. In march I started again with the backache, limping, funny feeling in hands burning feeling in armpit. But this time I had bladder problems legs got heavy and weak, im now st the stage doctors dont know ehat to do as I seem to have a couple of good days then my legs go back to shuffle walking knees bent. I find myself crying cos its now this time gone 8 weeks and ive had loads of tests again all clear to be told to carry on and we will look again in a couple of weeks, I have a family who need there mom my husband has been great but now needs to go back to work. Please can someone give me advice. I have started to fill in a dla form for help with not working my self at moment its hard to get by but being in limbo I don’t know what to put on it. I have dizzy spells, forget words mid convo, enven placed my own arm under running water instead of kettle,sometimes am wheelchair bound if we want to go out but seem to be getting nowhere with doctors. Thanks x

Hi and welcome.

Your symptoms do sound neurological in nature. There can be many causes other than MS. Have you been referred to see a neurologist? If not you should insist your GP sends you to one. I think that you would probably be given a brain MRI and possibly a lumbar puncture. A lot of people have to wait a long time before a dx can be given. In the last 2 years I have had two full body MRIs, a lumbar puncture, seen 2 neuros and a rheumatologist and I still have not got a dx. I am having another MRI next month. I have a limp/stiff leg due to spasticity!

Take Care

Moyna x

Hello and welcome :slight_smile:

I’m wondering if you’ve had new MRI scans done this time and whether or not you’ve ever had brain MRI? And when you say “lower back” do you mean the lumbar region or higher up? You also don’t mention which doctors you’ve seen - are you under the care of a neurologist? As Moyna already said, it sounds like you should be.

I’m not best placed to advise about benefits, but as far as I know, you need to have had difficulty with walking and/or care for quite a bit longer than eight weeks to be able to get DLA so this may not be an option for you. If you have had to stop work because of your symptoms, I think you should be able to apply for ESA though. Probably the best thing to do is to visit your local CAB and see what they say. One thing that might reassure you: benefits are not awarded because of diagnoses - the DWP only assess the symptoms and their effect on your mobility, care needs and ability to work. Just make sure that you supply copies of letters from your GP and any other medical professionals who can vouch for your problems.

If you are needing care during the day which your husband can’t provide any more, then it would probably be a good idea to contact your local Adult Social Services. They may be able to provide care and aids to help you cope better.

I know this is a really hard time for you, but try to hang onto the fact that you’ve gotten better before. There’s no reason that you won’t this time too so hang in there!

Karen x

Hi hun.

Karen and Moya have given you good advice, but i just want to add that I had DLA and Incapacity benefit (now changing to ESA) without a diagnosis.

In fact my diagnosis has changed more than once and was finally settled on Spastic Paraparesis/cause unkown last october.

But I was having walking problems for about 18 months before i applied for DLA.

They have to be satisfied that problems have been with you for 6 months and will continue for at least a further 6 months.

I do think there is something neurological going on with you.

Fill the form in telling them what you have told us. They may send a doctor to examine you and will consider his report, alongside your claim.

maybe you could ask soemone to fill the form in with you. That way if you forget certain words, they can prompt you.

Good luck with it hun and oh, welcome to the forum.

luv Pollx

Thanks for all replys I’ve seen a neuro doctor but he was not very helpfull I was in there 5 mins, done the walking on toes and heels which I failed and he checked reflexes which I had brisk leg reflexes. I had last MRI on brain two weeks ago which came back clear, still unable to walk properly legs feel weak and crampy. I’m back at doctors this week so I’m going to ask to see someone else or maybe muscle relaxers maybe as I’m on amirtriptline at moment . Thanks again all xx