HI:
I wwas dx with mmn about 8 years ago...scared my wife. My GP thought it was agressive ALS, and a few months left, but not sure, neuro-specialist sais no, more likely agressive MS maybe a year, but still not sure. 21 vials of blood for tests and a visit to a high level specialist, and she assured my wife this won't kill me.
Had fairly advanced symptom, all 4 limbs weakening, hand clawing....
IVIG helped very much, and I had minimal side effects, at 80gms every 3 weeks. After about 3 years, it became less effective, and went on concurrent Cyclophosphamide monthly (IV) for a year. Very effective after about 3 months, restoring me to about diagnosis date conditions. That stopped about two years ago. Last year I went to 80gms every 2 weeks to reduced rollercoaster effects. The last few weeks I am down a bit and will be doing another 6 months of Cyclo soon.
My Vancouver specialist tells me I'm one of the 3 most debilitated in my province (BC).
I'm male 62.