Skip to main content
3 posts / 0 new
Last post
What should/can I do?

 

Hi,

I'll try and keep this short!

I am being tested for MS at the moment - my aunt has it, so it is quite a possibility, especially as peripheral neuropathy has now been ruled out with some NCT tests I had (also have had a brain MRI which I am awaiting the results for, and there is a lumbar puncture on the way). 

My body is gradually getting more and more numb - the intensity is getting stronger and stronger - it started in my toes back in October, and has spread upwards so it now covers all of the T nerves and L nerves, plus it has started developing on the pads of my fingers. 

Just supposing it is MS, are there any exercises or changes I can be making to my lifestyle, which could help ease the numbness or minimise the severity?

Everyone keeps telling me at the moment that there is nothing I can do, but surely there is something I can do, however small! Every morning I am waking up, and my legs are feeling that little bit worse - heavier and tighter, my fingers are feeling that little more numb (which is really concerning me as my line of work means I am using a computer most of the time!) It is really starting to get me down, and often many weeks go between NHS appointments when I have the opportunity to ask questions. 

Really would appreciate any advice!

Thanks :) 

 

 

 

 

I have MS

Hello

I am sorry, it sounds like you are living a bloody nightmare at the moment. 

There’s no much I can advise you except to do little things that might help. So stretching, standing (if / while you can), trying to strengthen your core. And stretching your fingers out, raising all your fingers in turn. These small extendions of your body parts and stretching them title by little might help a bit. 

Presumably you have been seeing a neurologist who is arranging all your tests. Do you also have access to an MS nurse (if the neurologist thinks it is MS)? Or can you get a referral from your GP to a physiotherapist? Perhaps you should ask?

I do hope you get some answers soon. It does seem that you need those answers sooner rather than later. 

Keep talking to us. 

Sue

Hi Sue, 

Thanks for your message earlier on in the week, and for your suggestions. 

It does feel a bit like a nightmare. I have been seeing a neurologist but he has been incredibly dismissive...he has continually treated me as a hysterical woman who is having some kind of prolonged anxiety attack, although I have never suffered from anxiety and panic attacks! 

Anyhow, I have had a letter today saying that that the brain MRI I had done last Sunday shows that I do have lesions that 'may indeed correspond to demyelination,' and that I should have the lumbar puncture done, which is booked in for this coming Monday thankfully. It concerns me though that it only took 1 day for the test results to be sent to neurology and for the letter to be sent out to me.  

I am so annoyed and angry at the neurologist - he is a middle aged man talks as if he understands my body better than I do. I was admitted into A&E last November, and if he had taken me more seriously this could have been sorted out weeks ago....last time I saw him he was still recommending that I reduce my stress levels, and that he sees this kind of thing with people who have a stiff upper lip...WTF!

Although I have numbness which is over so much of my body, luckily it isn't affecting my mobility really...and fingers crossed it will never do!!! After todays letter, I really REALLY want to do as much as possible to try and stabilise it. I have written to my GP to ask if they can prescribe me with a high dose of Vitamin D as my levels were low last time the tested my bloods. Also, what are your thoughts on the OMS recovery plan? The evidence put forward regarding the link between a low saturated fat diet and disease progression is very compelling, and I feel that it is a lifestyle which I can put into practice without too much effort, so I might as well go for it. 

Any recommendations/suggestions for dealing with this both physically and mentally, as well as what I need to be asking the professionals at this time would be extremely welcome. 

Thanks in advance!