I was diagnosed with PNH benign about a year and a half ago. My potassium gaite was extremely high and Nerve Conduction tests also confirmed this the condition . I am being treated with carbamazapine tegratol and gabapentin. Other brands of carbamazapine seem to go right through me and cause no end of worries. It did take some convincing my GP what I felt the cause was.
My gp attitude is its benign no need to worry.
Since, the potassium gaite has normalised , I assume this is the tegratol, however the pain , cramps and spasms seem to be getting worse despite being benign.
It has always been the lower half of my body in the last 6 months my arms chest and shoulder are agonisingly painful , and simply getting a tea spoon from the drawer is so painful , yet I can lift 25 kilo.
This would seem to onlookers that the pain was when it suited me and it's really not .
Work is my escape , it relives the burden from my partner but also distracts, I can still do my job but It's still painful, it seems to be less affected by the micro movements I make .
I feel so alone sometimes with it all I feel like i look so fit and agile yet under the surface I hurt so much and feel so depressed and stressed that some days every movement almost reduces me to tears, which in turn on occasions can really affect my emotionally .
I have read so much on here today you all have made me feel like i am not alone and there are people who do know and do understand, I am not alone .
Thanks to you all