Sorry to hear about the anti mag problem and the pain you mention in another thread. I have been away from the forum for quite a while, but just thought I would touch base this morning and I came across your posting.
In my opinion, you may have what is called PDN (paraprotinemic demyelinating polyneuropathy) or IgM MGUS with polyneuropathy. Anti mag can also be produced by other proteins like IgG or IgA. Your protien electrophoresis will likley show an elevated level for one of the immunoglobulins. I have the same thing I think as does Norb and Allaug. It is a cloning of a B cell to produce ever increasing levels of anti mag, which is an antibody that attacks the myelin in the peripheral nerves. (hence “autoimmune” disease).
I had Rituxan treatments which were successful. Timing is important because while the rituxan may be successful, scarring of the nerves will happen and a full 100% recovery may not be possible. I still have some numbness in my feet, but was fortunate to treat it in time to reverse the numbness that was occurring in my hands.
I hope that this helps and that you can determine exactly what you have.
anti mag ?
is an elevated igg or igm reason to test for this anti-mag? lori
😮 😮 😮 😮
Norb, I read your posting and decided to go back and check again the units. Yes, they are BTU, but on further scrutiny, the BTU stands for “Bühlmann Titer Units”. I found this at [url]http://www.diagenics.co.uk/documents/buhlmann-ek-mag.pdf[/url]
which describes the anti-MAG testing procedure. I guess I must have been tired last night when I was trying to look up units of measurement for anti-MAG.
Which leads to the question…”what units does your lab use?”
Sorry for the misleading information. It would be most informative to know what the 12.94 (your October result) means. Does it refer to 129,400?
Norb…sorry for the quick conclusion on BTU.
I believe I may have the answer with regard to units of anti-MAG. The levels which were reported by Washington University in St. Louis by Elisa and confirmed by Western Blot for me were in BTU. If we convert BTU to kilocalories x 1000, then my level of 52,000 BTU equates to 13.10 kcal x 1000. If I take your measurement of 12.94 in October and covert it to imperial, it would equate to 51350 BTU. That’s just a guess on my part. Is there a way to determine if your results were in metric?
Most of the literature I found was in imperial.
Also, I discovered that the Elisa test does not correspond with the Western Blot test, but when they both indicate high levels of anti-MAG, it seems to invariably indicate damage to the myelin.
With regard to your comments on the bone marrow biopsy, I had exactly the same thoughts. I am quite pleased that these further tests are being done. The haematologist I saw last week seemed very competent and versed on this condition. As he said, there is usually a source to the problem of MGUS and he is hoping to find it. I’ll keep you posted, although it may take a couple of months for all of the tests and a final diagnosis.
Regarding your trip East, I hope it works out ok for you, and we would really like to see you in Toronto. I might add that we will be away the second half of August. Our eldest daughter is getting married in Halifax.
Finally, don’t get down about your progress Norb. I am convinced that we who are numb have a hard time knowing if things are getting better or not because they have to change a lot for us to actually feel the change. Sort of a catch 22. My advice would be to look for suttle changes at first. In time, you’ll get there.
I have a question for anyone who might be able to help. In a normal person, that is someone without any spikes in their immunopherisis, are there naturally occuring anti-MAG titers, or does the anti-MAG only show up in those with IgM PDN (DADS)?
The reason I ask is because in all studies I’ve seen, there are no instances of patients who got down to zero anti-MAG levels with Rituxan treatment. So I wondered whether the immune system makes these proteins at some low level as a normal course of events.