Anyone familiar with lymphomatoid granulomatosis?

Thank you so much for your reply. I'm sorry you're going through this. As well, it all started in November, and he had severe pneumonia and was intubated for 5 days. He went home, got better returned to work. Then in January he went back in because he had such high calcium levels. Then, in February he lost all motor skills, he could not move. It was like he was paralyzed, arms and legs. This is due to the lesions in his brain his spine and his lungs. He had one round of chemo was taken off of steroids, and then it returned again. In March, they did a biopsy. Couldn't figure it out then. They sent it to NIH and Dr. Jaffe is the one that determined the disease since then, his liver enzymes were too high and his platelets were too low to do any more chemo. His right leg gas clonus (severe shaking) which is really a hardship for him. Since then, he has built up and he will begin his 6 rounds of chemo next Friday. If this manages to get rid of all the lesions, then he will be having a stem cell transplant using his own blood, it's going to be a long journey .
Do they have you on steriods too?
I'm so sorry that you have this as well, although it's nice to be able to connect with someone. Keep going!!

@jvohnoutka Thank you for letting me know that you’re living with your son while he needs help. You may want to consider getting an aluminum walker that he can use when he feels a bit stronger. You can probably find one at a medical supply store or even Walmart. I so remember using one after I got home from the hospital. It gave me a sense of security.

@becsbuddy
Thanks. We are supplied with all of the items to help him.