Limbo Land - where do you turn?

[Sammbie]

Hi again,

I posted a month or so ago and have been waiting for further tests and trying to just get on with things in the meantime.

This is really a question for anyone who understands the UK's NHS system, I was in a UK group but seems I've lost the access to post.

I have neurological signs, such as atrophy, muscle twitches, clinical weakness, brisk reflexes, positive babinski and discovered today I have clonus in both ankles..

On my last examination with the neuro she marked my left leg with a strength score of 4, this weekend it felt so much weaker but with regular sit downs I got through OK. On the Monday AM school run, my limp seemed to be more pronounced, then my gait changed. Walking up hill is very hard work, going downhill feels like I have no breaks. I almost went face down on the first slope, fortunately a lamppost saved me.

Since last week my leg has gone from weak to been unable to support my weight independently anymore. I visited my doctor yesterday who referred me to hospital. I got booted out of hospital because I'm already under investigation with neurology. Not even a single examination, seems no one wants to know. The hospital sent me back to the GP, who whilst is supportive, can't offer me anything other than pushing the neuro for a quicker follow up.

I have my EMG and nerve conduction tests this coming weekend so I don't have to wait too long but in the mean time, how do I get on with daily life? I can walk (just) but takes me so much longer and the mile long school run is like doing a marathon. I can't get walking support without a diagnosis, which still seems so far away with a current follow up due in 8 weeks.

The GP made a lot of time for me today and we discussed the reality of a potential MND diagnosis and whilst they have allowed an open door policy for me all they can offer is support, unless I loose function of my bladder or bowls (which I'm happy to say are fine) then they can send me back to hospital.

Whatever it is I have had become more than an annoyance, I can't adapt my leg as I have my weak hand or leg. Now I'm scared because whilst being in Limbo land I can't access the support I need. I'm scared it will become worse and I'll be incapable of taking care of my children before I get a diagnosis.

I know there's not a lot I can do, nor anyone else but I need get these thoughts out and if anyone one does have any advice it would be gratefully received.

Many thanks,

Samantha

 

[WendyWooG]

Hi Samantha
You can self refer yourself to your local authorities adult care social services dept and ask for O.T assistance. They can then come out and advise you on stuff to help around the home. I had a probable mnd diagnosis and then went through a lot of exploration on possible other causes so was in this limbo for quite a while. The local authority O.T arranged an extra stair rail and grab rails for me while I waited for test results.

You could also ask your GP to refer you to physio if your gait has changed and walking is difficult. You will need to self advocate with your physio and make sure they understand the diagnostic possibilities but it would at least get them looking at support devices for your weak leg. There is a huge gap in the UK health service in getting practical physical help while you are waiting on diagnosis and you really have to be prepared to push. I had an ankle and a wrist support though physio and this allowed me to carry on walking with a cane for quite a while.

I did find the Red Cross very helpful in loaning me a wheelchair while I was waiting, it might be worth asking if they loan Rollators too? This would help get you through the school runs while you are waiting. It's also worth giving mnda connect a ring and asking if they have any advice on getting access to equipment while you are waiting.

Good luck with this and I am really hoping they find something treatable for you.

Wendy x

 

[Sammbie]

Wendy,

Thank you so much, some very practicable and doable advice, whilst it seems simple currently I'm struggling to see the wood from the trees. I will start the self referral process and ask the GP in regards to physio. Anything that helps whilst waiting will be a blessing.

I really hope that the diagnosis isn't MND and I'm trying to stay as positive as possible whilst waiting. I doubt I'll learn anything more until I see my neuro, unless I can coax info out of the EMG examiner.

Thanks again for such practical and useful advice.

Sam x