I am a 42 year old male firefighter. I have been sick since April of last year. June of this year I was diagnosed with autoimmune autonomic ganglionopathy. I was recently sent to the Cleveland Clinic, where I had some tests ran. The results were mixed. Got verification that I do have A.A.G. but also found my IgG, IgM levels were low and kappa was low. Lambda and IgA were within normal limits and no M protein was detected at this time.
What worries me is in previous tests my monocytes and platelets were both low. Just wondering if there is still cause for concern and further monitoring, since my autoimmune disorder is rare in many cases it is often linked to cancer.
I had a PET scan, which was negative luckily, but it doesn't detect multiple myeloma or leukemia. Pain began in arms and legs, best described as my bones hurt. Years ago I had pain in my ribs and my breastbone. I can't tell if I have the rib pain because I am on so many pain meds right now.
Should I still be worried?
Forums
3 posts
• Page 1 of 1
Re: Have ganglionopathy, but do I also have myeloma?
Hi Firemedic,
Sorry to hear that you've been sick for so long. It sounds like some progress is being made, however, in determining what is at the root of your illness.
Can you say exactly why you think that you may have myeloma? From the test results that you've described, the only thing that to me might possibly suggest that myeloma is the cause of your problems is your suppressed platelet level, but there are really lots of other things besides myeloma that can cause suppressed platelets (Google "thrombocytopenia" and you'll see what I mean).
More importantly, a lot of your test results suggest that you do not seem to have myeloma, such as no elevated immunoglobulin or free light chain levels and, in particular, a negative PET scan.
Actually, I just noticed the PET scan result, and that's a rather strong sign that myeloma is not the source of your problems.
If you want to understand more about what might lead to a diagnosis of myeloma, see the postings in this recent thread here in the forum:
https://myelomabeacon.org/forum/waiting-for-moms-diagnosis-t4600.html
It will give you an idea of what sort of tests and test results are helpful in determining whether or not you might have myeloma.
But, again, nothing in your posting to me suggests that you have myeloma -- which is good news, right?
Good luck!
Sorry to hear that you've been sick for so long. It sounds like some progress is being made, however, in determining what is at the root of your illness.
Can you say exactly why you think that you may have myeloma? From the test results that you've described, the only thing that to me might possibly suggest that myeloma is the cause of your problems is your suppressed platelet level, but there are really lots of other things besides myeloma that can cause suppressed platelets (Google "thrombocytopenia" and you'll see what I mean).
More importantly, a lot of your test results suggest that you do not seem to have myeloma, such as no elevated immunoglobulin or free light chain levels and, in particular, a negative PET scan.
Actually, I just noticed the PET scan result, and that's a rather strong sign that myeloma is not the source of your problems.
If you want to understand more about what might lead to a diagnosis of myeloma, see the postings in this recent thread here in the forum:
https://myelomabeacon.org/forum/waiting-for-moms-diagnosis-t4600.html
It will give you an idea of what sort of tests and test results are helpful in determining whether or not you might have myeloma.
But, again, nothing in your posting to me suggests that you have myeloma -- which is good news, right?
Good luck!
Re: Have ganglionopathy, but do I also have myeloma?
Hello again Firemedic.
I just noticed that you also mentioned that the PET scan you had "doesn't detect multiple myeloma or leukemia." Why do you say that? Were you specifically told that the type of PET scan you had won't pick up the presence of myeloma cells?
See this posting in the forum for more on the different kinds of imaging that can be used to pick up on bone damage from myeloma and the presence of myeloma cells in the bone marrow:
https://myelomabeacon.org/forum/pet-scans-for-multiple-myeloma-t3687.html
I just noticed that you also mentioned that the PET scan you had "doesn't detect multiple myeloma or leukemia." Why do you say that? Were you specifically told that the type of PET scan you had won't pick up the presence of myeloma cells?
See this posting in the forum for more on the different kinds of imaging that can be used to pick up on bone damage from myeloma and the presence of myeloma cells in the bone marrow:
https://myelomabeacon.org/forum/pet-scans-for-multiple-myeloma-t3687.html
3 posts
• Page 1 of 1
Return to Do I Have Multiple Myeloma?