Forum

Awaiting Results .......

Hi Everyone

Haven’t been on here for a while as I was visiting family (in Devon!) for 10 days. The travelling (by train and Tube from London) was certainly challenging, even with help from friends and assisted travel on the train. It’s taken me 4 days so far to begin getting over it. It was a nice break, but one of the sadnesses is that I discovered I couldn’t do what I had done last year. I’ve been going there once a year for the last 7 years, and for the last 4 years there has been a noticeable difference in what I could do.

This year, for the first time, I couldn’t get down to the beach, as it’s a long slope. Even with my stick I couldn’t manage it, which was sad. My normal walking too was noticeably slower and I couldn’t walk more than 10 mins at a stretch. The family commented on it.

A month ago I saw my Neuro who ordered another MRI scan of the lumbar spine - I had this on 8 June & still awaiting results. I also saw my GP today, as since last October I’ve had numbness in my left leg, ankle, foot & toes, and what I guess is dropped foot as my ankle is weak and goes over to the side. Whilst away I was wearing an elastic ankle support, but it didn’t help much. I mentioned it to my GP today & asked if a physio assessment would help, so he has filled in a referral form.

Another problem is that I can’t have a proper bath 'cos I don’t have the strength in my legs to get out. I don’t have a shower. My GP had requested an OT assessment last December for me, but now, 7 months later, I’ve still heard nothing.

It seems at the moment that it’s all a case of waiting, waiting, waiting, but it’s frustrating that all the time I’m in more pain and the leg weakness is getting worse. At my Neuro appointment he commented that if the MRI of the lumbar spine didn’t show up anything he may be tempted to think about muscle disease because of the level of weakness and discomfort.

After nearly 5 years I’m at the point where I don’t really mind what it is, as long as I know the cause and get some help with management. Limboland is so very very hard.

Sorry that this is long - everything seems to have been a long haul recently. Thanks, as always, for reading this, and for your support. I appreciate it.

Bren x

Hi Bren, really really sorry you are having such a rough time. Awfull to see your symptoms get worse and still not have a dx. Have you had a lumbar puncture? That was the only way I got a firm dx. When you go back for latest MRI results, if they still can’t dx, ask to have a lumbar puncture.

Re the shower… seems your paperwork might have got lost. You can self-refer. Look up you local council website. Find the number that deals with OT (if you can’t find the number call the main number or the number for social services and ask for OT).

Tell them that your GP had referred you but you haven’t heard anything yet. If they do not have the letter from your doctor, ask for the self-referral form… or ask them to send an OT to see you.

All I can offer are those bits of practical advice… but hope it helps a bit.

Take care,

Pat xx

(((Hi Bren and hugs))))

It’s always hard when in limbo like this but when you’re feeling so bad and finding things so difficult to do it’s even worse

Either contact your GP or better still take the ball by the horns and chase up that OT assessment yourself, seven months seems an awfully long time not to have heard anything at all. We shouldn’t need too but sometimes we have to ‘push’ that bit harder to get anywhere.

There are so many things that OT can help you with at home. I have a shower which is what I use most of the time but the shower’s over the bath and I have difficulty getting in and out of it. OT supplied me with a bath/chair lift which makes things so much easier. Now I can have either - a bath or a shower. They also ‘highered’ my sofa somewhat and helped me get a blue badge.

Unfortunately most GP’s don’t actually know that much about ms or things of a neurological matter so if things are worsening then contact your neuro’s secretary and explain things to her.

Keep a note of what’s been happening too so that when you do see your neuro you won’t forget anything, everything you can tell him will help.

Fingers crossed that your mri results come in soon.

Good luck

Debbie xx

Nothing to add Bren xxx just hugs from me xxx

Pat, Debbie & Kizzy

Thanks so much for your replies - and the hugs - I needed them! Sorry I was a bit down about it all - just wasn’t feeling well yesterday.

Yes, I had a lumbar puncture 3 years ago which came back clear; my Neuro calls me a ‘mystery’ lol!

When at my GP yesterday, I did mention the OT delay, so he said he would write to them again. I won’t leave it so long 'though to chase them up myself - I didn’t realise I could have self-referred, so will def now look up the info on-line.

Your practical advice, encouragement and hugs have been so appreciated. I’m not too good at ‘speaking up for myself’ with these docs, so I really value all your help.

Thanks loads everyone,

Bren x

Hiya Bren

Hope you are ok in yourself.

I guess that most of the time you dont have anything in life to make direct comparisons with and you just get used to how you do things in the here and now. Its only when faced with something you have done for many years that you get a smack in the face with the reality of how you have changed…I feel for you with that,and it must make you sad to see something taken away from you.

I say that as the gardeners world show had me using a stick for the first time,and I only managed half of it…ended up thinking it isn’t going to be worth the money going next yr.

On the positive front yes you can make changes to the here and now by at least getting OT in to give you aids etc.

As the assessment is a while away have a good look at your everyday living and note down the things that you struggle with or adaptations you need to make in order to do things. There is an array of gadgets they have access to to help with all daily living tasks, especially in the kitchen.

Physio and OT work much more closely nowadays and are usually based in the same office. With luck they might come out together for a joint assessment as they did with me as you get a holistic approach and only have to explain your situation once.

Take care

Pip

Thanks so much Pip,

You’ve hit the nail on the head! - At home I just carry on with my usual routine and don’t usually go much farther than my local high street on the bus. I don’t have anyone to compare myself with.

The family I was visiting in Devon were an aunt & uncle in their 70’s and they were able to do way more than me and neither of them even need a stick! Just 3 years ago I went and looked after their dog whilst they were on holiday. Although not speedy, I was able to take the dog on relatively longish walks, whereas now I could only walk 2 roads.

I think being there brought it home to me how much I had deteriorated (and my aunt told me so!), hence why I’ve been a bit sad. I feel for you too Pip - using a stick for the first time is hard.

However, your advice (as with the others) about OT is excellent & I’m now thinking positive again & will def push for the help I need.

Thanks so much for taking the time to reply - I so appreciate this site - it’s a lifeline .

Take care, Bren x