NL93
Senior Member
- Messages
- 155
- Location
- The Netherlands
Hi guys!
I was wondering if anyone could help me make a decision.
I've had ME for 4 years now. It started of with a flu after which I didn't really recover. With increasing difficulty I was able to go to university for 3 months after until I totally crashed. Couldn't walk more than 100 meters, unable to think at all, muscle weakness, circulatory problems(cold feet etc), dizziness. Classic Ramsey ME really
With careful pacing I gradually got a bit better to what you would consider moderate ME. I asked my GP and other doctors several times if I could try rituximab, but no one was willing to prescribe it to me off-label. I do have positive ANA ( 320 )
Then after a period of overdoing it again , I am now severe. Almost totally bedridden, sensitive to light and sound, severe POTS (heart rate 150 upon standing). I can just walk to kitchen and bathroom and can't have visitors for more than a few minutes.
My GP is sympathetic and is now willing to help me get a treatment with rituximab.
I am still considering it, but i am afraid that I am now too severely ill for it to work, or might get even more ill on it. So.. Any thoughts? Or other suggestions?
Thanks
I was wondering if anyone could help me make a decision.
I've had ME for 4 years now. It started of with a flu after which I didn't really recover. With increasing difficulty I was able to go to university for 3 months after until I totally crashed. Couldn't walk more than 100 meters, unable to think at all, muscle weakness, circulatory problems(cold feet etc), dizziness. Classic Ramsey ME really
With careful pacing I gradually got a bit better to what you would consider moderate ME. I asked my GP and other doctors several times if I could try rituximab, but no one was willing to prescribe it to me off-label. I do have positive ANA ( 320 )
Then after a period of overdoing it again , I am now severe. Almost totally bedridden, sensitive to light and sound, severe POTS (heart rate 150 upon standing). I can just walk to kitchen and bathroom and can't have visitors for more than a few minutes.
My GP is sympathetic and is now willing to help me get a treatment with rituximab.
I am still considering it, but i am afraid that I am now too severely ill for it to work, or might get even more ill on it. So.. Any thoughts? Or other suggestions?
Thanks