Wednesday, January 26, 2005
New discoveries (not fun).....
Saw the Sjogren's expert today, the "second opinion" rheumy, to determine if there was any treatment for the Sjogren's that I'm not already doing that I should be doing. We went over all the bloodwork he'd had done; all that was normal. And most of the x-rays were fine.
There was one problem that showed up on the x-rays of my hands, though: calcification. That was news to me. It's another thing my regular rheumy will need to keep an eye on.
The doc said that with the Sjogren's, the digestive troubles, and the problems I've had with my hands and feet, we should be on the lookout for scleroderma. It's not a common problem, but rheumatic diseases tend to cluster together, so it's always possible. He gave me a handout so I might recognize symptoms if they should ever occur.
He looked at the lymph nodes in my neck and did not like the look of them, especially since I only had one nodule when I saw him in November. And he found two more swollen nodes that were NOT there last Thursday when I saw the ENT. And these were on the RIGHT....alll the others had been on the LEFT side.
So he strongly feels I need to go back to the ENT and have a biopsy. The chance of lymphoma is small, but it is very real nevertheless. Should this be cancerous, it's best to catch it early.
If a biopsy comes back normal, he feels I should not go on an immunosuppressant because I do not show any signs of organ damage. The immunosuppressants have side effects that are pretty brutal, so they are generally save for severe illness only. At this point I would be considered moderate.
As far as whether or not I should go on permanent disability, he said the ultimate decision is up to me, but many of his patients who have similar multiple health conditions do end up unable to work. He said that he does not feel there would be a vast improvement in my condition if I stopped working, BUT he DOES think I might be able to slow the progression of illness.
I have a lot to think about and am a bit overwhelmed with all the news I've received in the past week. I guess I'll talk to the ENT's office first and work on the other stuff when I can. But no major decisions about my job until I've given a few things a chance to respond to treatment.
Right now exhaustion doesn't even begin to describe the depth of my fatigue.
Pain level: 7
Fatigue level: 10
There was one problem that showed up on the x-rays of my hands, though: calcification. That was news to me. It's another thing my regular rheumy will need to keep an eye on.
The doc said that with the Sjogren's, the digestive troubles, and the problems I've had with my hands and feet, we should be on the lookout for scleroderma. It's not a common problem, but rheumatic diseases tend to cluster together, so it's always possible. He gave me a handout so I might recognize symptoms if they should ever occur.
He looked at the lymph nodes in my neck and did not like the look of them, especially since I only had one nodule when I saw him in November. And he found two more swollen nodes that were NOT there last Thursday when I saw the ENT. And these were on the RIGHT....alll the others had been on the LEFT side.
So he strongly feels I need to go back to the ENT and have a biopsy. The chance of lymphoma is small, but it is very real nevertheless. Should this be cancerous, it's best to catch it early.
If a biopsy comes back normal, he feels I should not go on an immunosuppressant because I do not show any signs of organ damage. The immunosuppressants have side effects that are pretty brutal, so they are generally save for severe illness only. At this point I would be considered moderate.
As far as whether or not I should go on permanent disability, he said the ultimate decision is up to me, but many of his patients who have similar multiple health conditions do end up unable to work. He said that he does not feel there would be a vast improvement in my condition if I stopped working, BUT he DOES think I might be able to slow the progression of illness.
I have a lot to think about and am a bit overwhelmed with all the news I've received in the past week. I guess I'll talk to the ENT's office first and work on the other stuff when I can. But no major decisions about my job until I've given a few things a chance to respond to treatment.
Right now exhaustion doesn't even begin to describe the depth of my fatigue.
Pain level: 7
Fatigue level: 10
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