Need guidance please

I called neuro today, to be told my symptoms are not neurologic, and he has discharged me, I now don’t know what to do at the moment I can go 6/8days being able to walk, I’ll go to bed one night get shorting pains down legs and across my back , then not be able to work the following day as my knees are bent legs are weak, heavy and all I can do is a shuffle if I’m lucky cant lift legs have to help then.this goes on for 3/4 days they then start to get stronger again to the stage I limp, I then start the cycle again. This has been happening on and off the last three months. Had mris on neck back and head all clear lp clear too. I also get stone cold feet or burning sensation in feet, restless legs at night time, fatigue and not being able to sleep, I’ve had bladder problems, burning in arm pit pins and needles in feet and hands, dizziness, legs give way. Forgetfulness. I’ve even been filling kettle and put other hand without kettle in under tap. I feel down as it feels like he is saying. There is nothing wrong. Gp has referred me for physio and walking aids assessment she has also taken 6tubes of blood today to be tested. I have brisk reflexes can’t stand on tip toes and also when my legs don’t work they are no longer ticklish nor are my feet. Where do I turn now as I’m feeling depressed started to struggle money wise as I’ve been signed off work, due to the walking problems, and general feel lost.

Sorry it’s supposed to say walk when I wake the next morning

Hi Henri, oh what a terrible situation to be in! Extremely difficult for you.

With clear MRI and LP it is really not possible at moment I think to go further down the MS road (for now that is).

Go back to your GP and ask to be referred to an ME/CFS consultant. Now I know your symptoms do sound like possible MS (although actually ME/CFS symptoms can be very similar to MS and can be extremely disabling), but I think this could be a practical move. If you can get a diagnosis (dx) of ME at least you have a dx and something to help with benefits etc.

Also, later on, it will be possible to get another brain MRI through the ME consultant… and by that time the situation may have changed and lesions might be showing.

I was initially dx with ME and the consultant sent me for MRI which then led to MS dx.

Also I’m glad GP is doing blood work as there are plenty of other conditions that can cause such symptoms. Try to keep an open mind for now.

Hope this helps and you can get some answers very soon,

Pat x

Hi pat, Thanks for your reply, does me cause the diffulity in walking that I seem to struggling with at the moment. X

Hi Henri, yes ME can cause very debilitating symptoms and mobility problems. Google ‘ME/CFS’ and read symptoms.

CFS stands for Chronic Fatigue Syndrome - some people say there’s a difference between ME and CFS… but many people think they are same condition and many people with the condition prefer to call it ME (forget what it stands for).

Pat x