Treatments continued
My hematologist told me my anti mag level was 70.000 very high so they started me on cyclophosphamide for 6 months not much improvement so the i was given Retuximab over the same period and was told it would help over a a few months now almost 12 since i was given it.
i slowly felt stronger my energy improved and balance, but eventually i reverted back a little and I knew the condition was progressing again.
It was then suggested i go into hospital for 4 days and had immunoglobulin ivig so i did .
Unfortunately the effects were negligible but i had bad side effects of a
eczema eruption that removed almost all the skin on both my hands and lasted over a month of itching not good.
ive had no further treatments since for about 6 months but my anti mag has now come down and medically i should be improving but symptomatically im getting worse.
i can now only walk slowly and only short distance and standing up for long is not good, also get tired quickly and suffer with fatigue.
they are now discussing another course of retuximab
we will see if it helps.
today as i type this both feet and legs have gone numb and the pressure in them is quite irritating, does anyone else get this symptoms?

Hi Andrew and Allaug
Thanks to both of you for sending forum and private mail regarding our simmilar conditions.
I have almost total numbness in my left foot moving up the leg my right is going the same way, my fingers are also stiffening and have to little or to much feeling.
I was originally started on prednisalone 60mg but had bad side effects sweating dizziness and left me very week so i was weened of them.
I then had a CT scan followed by a bone marrow test that failed to get marrow just bone this was rather uncomfortable to be honest.
They tried a second test with the same result this was very painful on my meekest side i refused a further test and had specialist blood tests that revealed the anti mag problem.
As i was at that time suffering nerve pains and bad cramp and leg spasms they started me on Pregabalin tablets 75gm twice daily im now on 225gm twice daily maximum i can go up to is 300gm twice daily.
more to follow next post