New, worried and desperate for advice

Welcome and introductions
1

Hi there, very new here and haven’t been diagnosed yet but really need some help.

About a week ago I was experiencing numbness in both feet and was struggling to move, since then it’s got worse and my feet and ankles feel really tight. I can feel the coldness of the ground but am really struggling to walk. My legs from the knee down also feel very heavy and I have numbness around the backside and on my left side near my ribs. I went to A&E on Wednesday and they took my bloods and got me to do various tests and have referred me to a neurologist but thinks it could be MS but I’m scared it could be MND. I’m not in any pain, arms and hands seem to be fine at the moment, nothing wrong with my sight or speech just my legs, numb num and feet.
I’m in a situation at the moment where I just feel lost, I don’t know what to do, I want to go outside but can’t even walk to the car let alone down the street. I work full time and am trying to work from home to distract me from what’s going on but I’m frightened for my future. My husband is having problems at work and is depressed and I’m trying to keep things as normal as possible for my 13 year old when all I want to do is cry!
How can I get the movement back in my feet so I can at least leave the house again? I went to the gp yesterday so they can refer me to the neurologist and I said what do I do in the meantime and they didn’t answer. My appointment could be months and months away. I’m completely lost and just don’t know how to cope. I keep fearing it’s not MS but MND and the worry is making me feel sick.
Any advice or honest feedback is appreciated. Do I need to prepare myself for MND?

4

Well, I understand that there are about 5000 people with MNDin the UK as opposed to over 150,000 with MS and over 7000 new cases every year (i.e getting on for 50% new cases of MS than the total of existing cases of MND) so purely on those stats there is a far, far higher chance of someone developing MS than MND. I also understand that some of the initial symptoms of MND are problems with speech and swallowing. If it was me I would forget about MND.

Having said the above, I’m no medic.

I haven’t a clue how to recover your walking ability but , if you do have MS then the typical pattern after loss of some function is that it will return over the next few weeks- maybe months . It won’t recover 100% but there should be significant recovery. In my case the first symptom was pretty much total loss of vision in my right eye. The vision recovered over a period of weeks and although (18-19 years later) it’s not perfect I have no problems reading and doing stuff.

If you do have MS then take heart. Everyone case is different but treatments these days are far better than when I was diagnosed. After I was diagnosed I didn’t develop any particularly noticeable symptoms for around 10 years. I now have some difficulties but am generally active - in so far as a 70 year old is active!

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