Welcome to the Club!

October 18, 2007 at 8:08 am

Dear Andrew!

I haven’t been in here for a while, so I haven’t seen you posts until now.

I’m happy (and sorry) to be able to welcome you to our rather exclusive “club”. You might have read some of my posts, so you know perhaps that I was diagnosed with antiMag IGM PDN about three years ago, and got Rituxan\Fludarabin (another chemo) in the spring of 2005. My protocol was a little different from what’s usual in the US – and Canada. I also had four treatments, but 28 days apart. After the last treatment, I started to improve almost at once, but it has been a slow process (I believe, Norb, that myelin grows somewhat faster than the nerve-axion itself), and my motoric disability (walking, hands\arms tremor) have improved fastest and best, while the nerve pain is still there, more managable now, but if I forget my pain-killers (2400mg a day of Neurontin + some extras: paracetamol, codein, amitriptyline) I am really reminded of the fact that my nerves are not healed – yet. I can also have days that are quite painful even if I remember to take all my medication, and then I feel like I’m bruiced all over my body while my hands and feet are burning like h e l l.

Perhaps I should mention that my neurologist does not agree to my diagnose, because he says they haven’t found any antiMag, but my hematologist, who is the one that found out enough to give me the right treatment, says that either the amount of antiMag is too small to show up on the tests, or there is another aspect concerning my IgM that does the damage. He and I agree that the important thing is that when the chemos killed off the huge amount og IgM in my blood, I started to recover almost immediately.