Jelly foot sensation

Oh that's horrible , I haven't fallen but it is a horrible sensation I also get like a burning sensation under my feet not all the time I get like a numbness sometimes in left arm but several years ago I was diagnosed with transverse myelitis imflamation of the spinal cord. Has your daughter got post viral fatigue

Yes, well she was given this Post Viral Chronic Fatigue diagnoses in February , but we never had an illness . We have had months of bed rest and constant blood tests and various MRI scan which have all come back clear but she has lost mobility and has various sensations in legs and arms ,she also slept 16/18 hours a day in the begining without being woken she would sleep longer x Unfortunately we are not UK based and have not been refered to a specialist and just keep getting told it's long term !

So sorry for this , it's an extra problem to deal with ! Can you tell me what treatment you having for this ?

When I was diagnosed with transverse myelitis 16 years ago I was given nothing apart from baclofen I collapsed. At home had tonsillitis at time. Lost power on left side of body then had burning sensations numbness pins needles electric shock like pains in lower baćk given lumber puncture at the time. I was  being tested for ms. Had lots of tests finally after many months I was told had tm 

I can honestly say rheki helped me, and a tens machine I wore most of the day

I did have physio though to help me walk again as I was in wheelchair an then walked with frame then stick 

Many thanks for your reply , was wondering what and how they tarted you as at the moment we seem to be having little help ! My daughter was having two twenty minuet hydro physio sessions a week but this has stopped as local hydro pool is out of action and she is not able to walk more than a meter so if we leave the house she is in a wheel chair. We have been looking into various tests but it's Alll just a waiting game as they say time is the healer, this is all good and well but when your child is in constant pain and missing so much of her life I find it difficult to believe that there is not more help all of you could be having x Again many thanks for the reply .

Hi jyst when I collapsed at home I was admitted to hosp the left side had gone completely no power to stand I remember being given heparin injections in my stomach and aspirin test to check pupils several neurological tests this happened to me when I was 42 I'm 59 next week I had physio from hosp an continued for several months to learn to walk again I had lot of electric shock pains down the lower back area burning sensations in arms an left leg neck pain numbness too, I couldn't feel the temperature of bath water on my left leg/ foot but right leg wasn't affected I was seen by couple of neurologists ct scans mris and lumber puncture I went between local hosp and addenbrookes in cambridge / neurology hosp queens square london it took many months to give diagnoses of transverse myelitis they were checking for ms among other things also Lyme disease it must be heartbreaking seeing your child in constant pain my pain was managed by tens machine and rheki helped me a lot with relaxing and the pain I had sciatica type pain running down left leg at times I wish your daughter all the best an really hope she gets sorted ASAP xx

Thanks for replying I've never heard of dysautonomia I must admit it is horrible when that happens since I was diagnosed with transverse myelitis 16 yrs ago anything happening concerning left leg/ foot makes me wonder whether I will have the left side collapse again but it only happens few times so I have to put it to back of my mind. And carry on dealing an trying to pace myself with the post viral fatigue 

It is worrying isn't it Phillis.it happens to me a few times

That's right hopefully it's put your mind at rest, it's fear of the unknown isn't it.