walking problems energy and pacing

[kazandoz]

hi all, would appreiciate your wisdom and experience as stuck in limbo for the moment, and am having to look for advice by myself (the joys of NHS waiting lists ;)!)
I was hospilized in the summer as my gait had got progressively worse over a month or so with an ataxic gait and then myoclonic jerks as I moved. I had been ill since the February with extreme tiredness, face and hand numbness, and then from the April with vocal chord paralysis, which continued until this Christmas, so I can finally natter away to my hearts content again now! Brain and spine MRI was clear.
Since a small amount of initial improvement in hospital, my walking problems have plateud (sorry dont know how to spell that!), and has remained that way since, with some days worse than others if I am tired or having to 'compute' a lot, such as moving around obstacles or people. Towards Christmas I finally gave in to using a wheelchair, as I can not manage more than around 10 to 20 metres with a stick before my legs are too tired, stiff and unbalanced, and sometimes my torso and head jerks interfere with my gait too much. I also sometimes feel quite unwell, i think because of all the energy i am trying to use to walk. Something else I often get is very out of breath or tight chested (I am not asthmatic) after walking sometimes a very short distance. Also since becoming ill my normally great blood pressure has been spiking very high at times (prob because of walking issues?). I reckon I've worked out that the torso jerks that sometimes spread to my head and limbs are made worse by movement either by me, or watching movement such as in other people or in the car.

It feels like I have a background of these symptoms all the time, which are then overlaid by other sorts of blips such as pins and needles, numbness pain etc which last for a few days/ weeks then disappear again, which although fit with more typical ms symptoms, I dont think this pattern of overlaying symptoms fits?

I suppose what I'm asking is any of you recognise these symptoms, as I know how differently people suffer? I'm trying to work out if I should pursue anthing other than the physical and hydrotherapy I am currently doing, as although I am still on the neuros books (i have an appointment to see her next July), it feels like they are now just leaving me to it, as the MRI was clear. I can really sympathise with other people here who are in limbo!

[Poppy7402]

I see you've mentioned the NHS, so I presume you're in the UK.  As your current neurologist is unable to get to the bottom of your issues, I wonder whether it would be possible for you to see Professor Hadjivassiliou at Sheffield?  He, and his team, are very good at getting to the bottom of unusual cases.  

Best wishes.

Poppy

[kazandoz]

Thankyou Poppy, I am currently chasing my current neuro, but if no luck I will look him up. Thanks once again, karen

[aspen2]

Unfortunately the road to a neurological diagnosis can be a long one, mainly because it doesn't necessarily lead to multiple sclerosis and there are many mimics out there.  Even more lengthy when tests and imaging aren't textbook.

I'm glad you are doing physiotherapy and aquatherapy -- I started both while in limbo and they help immensely.

I would recommend getting out of the wheelchair however as much as possible; if you don't use it you will lose it and there's a world of other assistive equipment out there.  I've spent time in a wheelchair and always end up with even more fallout.  I wonder if a walker would be enough?

Some of the jerks and spasms could be a nutritional deficiency so something to look into -- magnesium supplements really helped me in that area.  I was rock bottom despite a decent diet.

At this point, you are "being followed".  It can be a long process.

I've sent you a pm; I hope that's okay.

[kazandoz]

Thankyou :)
Good point about the wheelchair too, and one I will be mindful of, as it can be all too easy to use the chair, and I can imagine how I could get spoilt by the comparative lack of effort it takes to use my arms to get around in it! Unfortunately when they tried the Walker with me, my jerks were wrenching it off the ground, and then I was falling over with it, I felt like a right wally :)!