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Help! - Hyperplasia of lymph nodes - endocrine probs POEMS?

PostPosted: Fri Sep 29, 2006 11:58 pm
by cured4real?
I just received my bx results from my lymphectomy in 1998, which followed the crumbling of 4 molars and severy rll pneumonia. A cause for the problem was never discovered, I was told I did not have lymphoma, so I thought everything was ok. I think castletons was mentioned but I don't remember if I was ever tested for it, or whether they told me I have it and I didn't know what it was. There is no record of this in my medical records, but I don't have everything.

Now I am having the same problem with sialdentitis, swollen lymph nodes, possible cellulitis/absess again. Since 1993 I have had hyper and hypopigmentation, hypothyroidism, cervical stenosis, calcified lymph nodes in my groin and underarms, kyphosis in my dorsal spine which looks like a fracture, and have had two neck surgeries for cervical stenosis (plate put in) and spondylitis. I have peripheral neuropathy throuhout my body and was diagnosed with polyglandular dysfunction with diabetes and hashimotos and lupus-like/sjogrens like infection. My concern is that I have all the symptoms of POEMS.

Can someone have myeloma or monocular gammopathy since about 1993 (thats when my pigment went bad) and not know it? I'm beginning to get really sick now, things just falling apart. What tests would be good to get? I live in the country and my docs aren't up on rare stuff and I want to make sure they test and rule out anything like myeloma. I'm very scared.

Thanks in advance for any help you can give me. I'm so scared because my throat is swollen ad they won't bx it and its been bad for a month and a half, non-responsive to anything but dexamethasone. I feel like I'm really ill this time. My kidneys and calcium and protein have been a problem frequently in the last year. Thanks again so much for any help you can give me. I plan to see my doc on Monday.

PostPosted: Sat Sep 30, 2006 6:16 am
by patoco
Hi and welcome to our forums!

It would be very very unlikely that a person could have myeloma or monocular gammopathy for ten years and have it nto show up on tests. The myeloma especially has distinct blood test result that would clearly show it.

With the symptoms you decribe, there could be any one of several conditions involved and with this I would hate to even conjecture.

The single best article on Poems is:

Poems Syndrome - eMedicine

our page on Castleman's also has some info on Poems.


The eMedicine page will give you an idea of some of the testing involved.

When you go to your doc Monday, lay it all out for them...explain what and why you are concerned and corner them for some answers.

Best to you!



PostPosted: Sat Sep 30, 2006 8:49 pm
by cured4real?
Thanks so much, Pat. I printed out the articles because I live in a really rural area and they probably aren't familiar with these conditions. Unfortunately, they never sent my bloodwork done with the lymphectomy in 1998 so I have no idea whether they ever tested me for castlemans, poems, myeloma, or gammapathy. I'm going to have to call them. I'm really having trouble getting treated for my swollen lymph nodes and sialdentitis in the neck this time and the pain is bad, though I have a lot of numbness now, which is a blessing in a way. I can't even get anyone to biopsy it or drain it. Maybe I'll have better luck getting bloodwork. I feel reassured that somehow probably they would have caught it in some other bloodwork, but healthcare where I live is not real good. I hope you are doing well and that everyone is doing well and I will pray for all. Thank you again for the reassurance. I was pretty panicky with the diagnosis of hyperplasia of the lymph nodes and no cause was ever determined.

Test for myeloma?

PostPosted: Sun Oct 01, 2006 12:52 am
by cured4real?
I couldn' t find a specific test for myeloma, other than protein in specially tested urine and/or serum. Is this the one you are talking about? I would like my doc to just cut to the chase and run this test. Do anyone happen to know what it is called? I'll read through the articles again in case I missed something. Thanks. Havig trouble right now.

PostPosted: Sun Oct 01, 2006 4:27 am
by patoco
Here's an at length article for all the vrious tests for myeloma. BTW, just had a friend who also went through this and all these tests are consistent with their experience.

From Cancer

Tests for myeloma

At the GPs surgery
Most people go to the GP when they first suspect they have a health problem. Your family doctor will examine you and ask about your general health and medical history. The doctor will also ask you about your symptoms. This will include what they are, when you get them and whether anything you do makes them better or worse.

Your doctor may give you a physical examination to look for things such as bruising, bleeding or signs of infection. You will probably be asked to have some simple blood tests. You may also have a urine test if your doctor suspects myeloma.

If your doctor suspects that you may have multiple myeloma, they will arrange for you to see a haematologist at your local hospital. A haematologist is a medical doctor who specialises in diseases of the blood.

At the hospital
At the hospital, the haematologist will ask about your medical history and symptoms. He or she will examine you and arrange some more tests.

You may have:

A urine test
Blood tests
Bone marrow test
X rays
Urine testing

The specialist will ask you for a urine sample. Your sample will go off to the lab, where the pathologist will check for the abnormal antibodies made by the cancerous plasma cells in multiple myeloma. Antibodies are proteins. You may hear the antibody called monoclonal immunoglobulin or paraprotein. Different abnormal proteins are made in different types of myeloma. Bence Jones protein is part of the abnormal protein made by the plasma cells. The body gets rid of the extra protein in your urine. Once in the urine, the protein is called Bence Jones protein. So it may be picked up in your urine sample if you have multiple myeloma. About 3 out of 4 people (75%) with malignant myeloma have Bence Jones protein in their urine.

These protein molecules can damage the kidneys as they pass through them from the blood to the urine. Your doctor will check the levels of creatinine in your blood. Creatinine is another chemical that is removed from the body by your kidneys. If the levels of creatinine in your blood are high, this may mean your kidneys are not working properly.

You will probably be asked to collect all the urine you pass for 24 hours. This is the best way of finding out how much Bence Jones protein you are producing and also how well your kidneys are working.

Blood tests
There are a variety of blood tests that help to diagnose myeloma. One of the first blood tests your GP may have done is a blood test called an ESR. This stands for erythrocyte sedimentation rate (ESR). This test shows the doctor whether the red cells (erythrocytes) are sticking together, forming clumps. An abnormal ESR can be a sign of many illnesses or conditions, such as arthritis, infections and inflammation. But it can also be raised in myeloma, so an abnormal ESR may prompt your doctor to do further tests, particularly if there's no obvious reason for it to be raised.

The main blood test to diagnose and monitor myeloma measures the type and amount of abnormal antibodies (paraprotein) produced by the plasma cells. This blood test is called serum protein electrophoresis or immunofixation because of the way the blood is tested in the lab.

Your specialist will do a full blood count to check the levels of the different types of blood cells. Your GP may have already done this blood test, but it's likely to be repeated. If any of the blood cells are abnormal, this will be noted and reported back to your doctor. The doctor will be looking out for low red blood cell or platelet counts. Sometimes there are low counts of the different types of white blood cells as well, although these can be normal. You will have other blood tests to check that your liver and kidneys are working properly. Your doctor may also ask for your blood calcium level. This can be raised in myeloma, if it is affecting the bones.

There is a new test which is useful for diagnosing and monitoring the small group of patients who don't produce immunoglobulins that can be picked up on the standard blood and urine tests for myeloma. You may hear it called the 'serum free light chain test' or Freelite. Serum means the blood, and the 'free' just means the protein is floating unattached in the bloodstream. The 'light chain' is part of the abnormal protein made by myeloma cells that we call Bence Jones protein when it gets into the urine. This test can pick up tiny amounts of free light chains in the blood.

Bone marrow test
This is sometimes called a bone marrow aspirate and biopsy. For this test, the doctor must remove a sample of bone marrow cells (aspirate) with or without a sample of bone (biopsy) to look at under the microscope. There is more information about having a bone marrow test in the About Cancer Tests section of CancerHelp UK.

In the laboratory, your haematologist will look at the cells from the bone marrow aspirate to see if there are any abnormal chromosomes. This is called cytogenetics. About 7 out of 10 (70%) people with myeloma have chromosome changes. We don't know how finding out about these changes can help just yet. In leukaemia, they have been found to be helpful in predicting how patients will respond to treatment. Doctors can use this information to help them decide which patients need more intensive treatment. Various research studies are taking place to see if these chromosome tests can be used in the same way for myeloma. We know that chromosome 13 can be abnormal in myeloma, but we don't know what this means for patients just yet.

The large numbers of plasma cells being made in the bone marrow can cause damage to the bones. It will help your doctor to find this damage if you mention any bones that are painful. Then, your doctor will ask you to have X-rays of all your long bones and your skull to find any areas of damage that are not causing symptoms. This is called a skeletal survey. You may also be asked to have a chest X-ray to check your general health.

CT Scan
A CT scan is a type of X-ray that takes pictures from different angles. A computer linked to the X-ray machine creates a detailed picture of the inside of your body. Your specialist may want you to have a CT to examine more closely any areas of bone damage that have showed up on X-ray, particulary small areas of damage. Or you may need a scan of any painful areas of bone that appear normal on X-ray. CT scans are also useful for diagnosing disease in soft tissue (outside the bones). There is information about having a CT scan in the about cancer tests section section of CancerHelp UK.

MRI Scan
An MRI scan uses radio waves and magnetism to provide a detailed picture of the inside of your body. An MRI scan may give your specialist more information about the extent of your myeloma than X-rays. And it is particularly useful for investigating myeloma that is affecting the bones of the spine, and possibly causing pressure on the spinal cord. There is information about having an MRI scan in the about cancer tests section of CancerHelp UK.

Blood tests
You may have some more blood tests done to help the doctor know the stage of your myeloma. These might include measuring your albumin levels. This is a protein in your blood that's produced by your liver. If you have myeloma your albumin level can be low. Another blood test called beta 2 microglobulin measures the level of a protein in your blood. This test can help the doctor know how advanced your myeloma is.

After the tests
You will be asked to come back to the hospital when your test results have come through. But this is bound to take a little time, probably about a week or so. This is a very anxious time for most people.

While you are waiting for results, it may help to talk to a close
friend or relative about how you are feeling. Or you may want to
contact a cancer support group to talk to someone
who has been through similar experiences.

If you would like to talk to someone outside your own friends and family, look in our help and support section for counselling organisations. There is more information about counselling in our living with cancer.

Last updated 07 June 2006


Thanks again

PostPosted: Sun Oct 01, 2006 8:25 pm
by cured4real?
Thanks again, this article was clearer for me. My brain just isn't what it used to be. I hope that someone can take the swelling in my throat seriously, because I don't feel well. I'm going to try to see one of my docs tomorrow, or if worse comes to worse, will go to ER and plead my case. Unfortunately, the closest good medical facility that takes my insurance is 4 hours or more away, and I haven't felt good enough to drive. At least now I can bring this article, although docs won't look at it, I can quote it and tell them what I want. Unfortunately, this is what I have to do to get any medical care at all. Thank you so much. Hopefully, everything will go well.