AnonymousJanuary 22, 2009 at 3:48 pm
How many of you folks with CIDP have had the Bone Scan to look for a root cause? I have heard of it when treatments fail, but, why would it not be done for good practice regardless. After diagnosis or whenever.
I have a friend who is a cardiologist and he is pushing me to have this done. He happened to have a friend diagnosed with CIDP late found a tumor in his femur and was damaged by ongoing treatments. the tumor caused the CIDP.
So, Have you had one done and have you ever asked to? what was your doctors response to it.–thanks–
AnonymousJanuary 22, 2009 at 4:42 pm
Yes, I had been asked to have a bone scan but by my family doctor.He worried that with taking prednisone maybe leaching calcium from my bones. I had many falls at the time. Since I am now in a full time wheelchair, my falls have not been prevalent for some time. But I think a bone scan is good as one gets older regardless if any disease.
AnonymousJanuary 22, 2009 at 9:03 pm
There is a cancer of bones called multiple myeloma that has an association with CIDP. Some of those posting with monoclonal gammopathy might have multiple myeloma or Waldenstrom’s macroglobulemia or MGUS (which is different but can be an early sign of myeloma). Myeloma is an abnormality in the bone marrow–the soft part in the middle of the bones where blood is made, but it can affect the hard part of bones and be seen as holes in the bones. I was tested for this with a skeletal survey in which they take pictures of all your bones looking for areas in which the bone is eaten away (lytic areas) by the presence of tumor cells. I had this done because my MRI showed a strange looking marrow signal and I had a blood test for a monoclonal antibody (serum electrophoresis) that was abnormal. A skeletal survey is a better test for myeloma than a bone scan.
the bone density test (also called a DEXA scan) looks at the density of the bones. It does not look for tumor. It is used to see if prednisone has made the bones weak or to look for osteoporosis.
The bone scan is used to look for solid tumors that have gone to the bones and sometimes to see if there is an infection of the bone. Bone scans are typically not used as screening tests for cancer, because they use radiation–more than even the skeletal survey, unless one is having a lot of unexplained bone pain. Most tumors that go to bones are not in your age range or are not common. So breast cancer (not common in men), prostate cancer (typically in older men than you), osteosarcoma (typically in adolescents and the 20-year-old group), thyroid cancer (rare), etc. Some kinds of lymphomas and lung cancer can go to bones often late and usually when there are other signs or symptoms. There are some adult sarcomas that start in bone but these are not common and not commonly associated with a tendency to immune mediated nerve damage.
You might want to ask your friend which tumor he was worried about. If it is multiple myeloma, even though you are on the young age for this, it might be worth considering a serum electrophoresis and 24-hour urine collection for a monoclonal protein. Bone scans look at rebuilding up of the bone after damage and the damage in multiple myeloma is holes in the bones, so a bone scan is not nearly as good a test for it. It is probably reasonable for any of us adults to get a chest xray which will show lung cancer and some lymphomas as well as showing the bones of the spine and ribs. This does not take much radiation to do.
WithHope for a cure of these diseases
AnonymousJanuary 22, 2009 at 9:40 pm
[SIZE=”4″]Thanks for clearing that up,With Hope. Now I understand why I had to go thru a bone marrow test. I don’t think I’ll need a bone density test for awhile. On Dec.26 I took a bad fall & only sprained my wrist. A relief in a way. I’ve been taking steroids for over 4 years now,with no real problems.[/SIZE]
AnonymousJanuary 23, 2009 at 4:51 am
I’ve had the bone density scan twice and bone marrow biopsy to look for exactly what WithHope said – cancer and/or infection. Such a non-event I fell asleep in the bone density scan. It takes awhile, you have to drink a lot – the first time they recommended I drink beer after the scan because it makes you pee alot so I’d get rid of the radiation faster. The second time they didn’t have such fun advice for me. The bone marrow biopsy wasn’t a big deal either – hurts a lot less than a lumbar puncture. I say do the scan, might as well rule out the possibility… what’s a little more radiation? :rolleyes:
AnonymousJanuary 23, 2009 at 6:00 am
Thanks for putting it in perspective a bit there. Looking in past records
I did have SPEP, UPEP, SIFE and UIFE done and all were normal. I am just trying to make sure threre is nothing I am overlooking in what I ask for. People you talk to throw things out at you and alarm comes into play.
AnonymousJanuary 23, 2009 at 12:59 pm
Tim, I’ve had 2 bone scans since gbs/cidp. 1 was used to determine if there were hot spots in my bones-a few were found. The drawback for me with a bone scan was the nuclear dye that was used caused a relapse. I just had one a few months ago and a different nuke dye was used-this also caused a relapse, but not as severe as my last test. I have had the bone density test done also-bad hips. If it were me and all the blood tests weren’t performed already then I would go that route verses the scan route, first. I’ve had all the blood tests performed at one time or another and sometimes triplicate, its much easier then the scans:) Keep in mind most cancers give off markers in the blood that can be tested for. Another relatively easy test to ask for would be the genetics test-they can tell you if your genes are hiding something-like the clue to what neuro problems you might be up against.
AnonymousJanuary 24, 2009 at 11:28 am
Tim, I don’t know if the scan I had 1 1/2 years ago was the same as the bone scan others are talking about. After a bone marrow biopsy showed a mild form of B-cell lymphoma, I had a whole body PET scan along with a CT scan. I received an infusion of some radioactive material which would show up concentrated anyplace with a cancerous growth. It was negative other than a bunch of gall bladder stones and a mildly enlarged prostate.
AnonymousJanuary 24, 2009 at 7:44 pm
I do not get any reume from all this…more confussion,..
I you people get negative serum test (electrophoresis and 24-hour urine collection for a monoclonal protein), why going for a scan with strong radiation, and bone marrows. These are risky test for your own future, and are not
Seems crazy …
AnonymousJanuary 25, 2009 at 4:04 am
Good Point Pablo,
Thank you for making me think about this and in my case I can tell you that they did not do any electrophoresis or 24-hr urine collection on me – never have in fact. So I’m wondering what the tests are for and why I’ve never had either one. I don’t think I’ve had my urine checked in the last two years and even then they were only looking for bacteria to try to explain the fever. And yet I’ve had two bone scans and countless MRIs, x-rays and CAT scans. I’ve had so much radiation I’m scared to go near an airport for fear of being thought a terrorist. I wonder if this is because insurance companies over here are ready to pay for expensive tests more often… you know? Why not order the $1000 test because the patient isn’t paying for it vs. the $100 urine test. Hmm. Maybe I’m too cynical but I can tell you I’ll be really balking at any more scans in the future. Thanks for making me think about this.
AnonymousJanuary 26, 2009 at 2:44 am
I’m scheduling for a MRI and doctor’s office notes said most get everything tripled approved before OR I pay for it. My orthopedic surgeon was wondering if my chest port would interfere with MRI of my right shoulder.
Gee, if I have to get my chest port replaced I can get my shoulder done at the same time. Maybe get some price reduction-2 surgeries together.Same area. I’ll already be asleep and draped. Known folks who’ve had similar stuff done at same time.
Chest ports can’t be that rare or the doctors I see just aren’t familiar with them.
Whatever the outcome I want my arms to be strong enough to plant the colorful flowers I do every year. Best part of spring time.
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