How do I get help now? MGUS was confirmed a month ago. I'm on a 3-month monitoring schedule per the hematologist/oncologist. However, I have numerous symptoms, fatigue, inflammatory episodes in various areas of my body with corresponding pain, vertigo, visual problems, weakness. Neurologist confirmed polyneuropathy. Plus, MRI confirmed two lucent lesions in my brain. Hematologist/oncologist said she did not know why I was experiencing the symptoms and walked out of the room without any suggestions to address the increasingly debilitating nature of my symptoms.
So I sought a second opinion at a renowned university cancer center. I saw them last week. Several of my tests were slightly elevated, but not enough to confirm multiple myeloma or POEMS. They had no suggestions for treatment of symptoms because they cannot confirm a specific diagnosis, so I was told to come back in three months for follow-up. Suggested follow-up with neurologist to address polyneuropathy, but they failed to hear me when I told them the neurologist confirmed polyneuropathy but was clueless about anything else. He did not suggest treatment nor did he know the cause of the polyneuropathy.
I don't know what specialist to go to now. I don't have enough or high enough clinical factors to confirm a diagnosis, but I am suffering. What can I do?
I am in despair and pain and decreasing health. I followed the standard of go to your doctors, get a second opinion, etc., but they all seem to be afraid of helping me if I don't fit one of several diseases they are familiar with.
Any suggestions, anybody?
Thanks!
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Re: MGUS & unconfirmed disease (aka limbo)
Hi Anonymous,
Welcome to the forum. Sounds like you are really going through a rough time.
You might want to try registering on this site (which you can do anonymously). It will make it easier to follow your posts in the future.
What city do you live in? Folks on this site may make some additional suggestions on where to find top multiple myeloma specialists in your area. Just because a particular university is renowned for cancer research, that doesn't necessarily mean they have top multiple myeloma specialists there.
Some questions that come to mind are:
Have you had a bone marrow biopsy yet? There are forms of multiple myeloma that won't show up or will only register slightly in blood and urine tests. The only way to sort that out is to conduct a bone marrow biopsy.
Has anybody discussed the possibility of amyloidosis and/or tested for it?
Do you know your MGUS isotype? (IgG-Kappa, etc).
What are the doctors saying about the lesions found in your brain? Has anybody suggested running a PET/CT to see if you have any cancerous spots in your body and to see if your brain lesions are cancerous?
Welcome to the forum. Sounds like you are really going through a rough time.
You might want to try registering on this site (which you can do anonymously). It will make it easier to follow your posts in the future.
What city do you live in? Folks on this site may make some additional suggestions on where to find top multiple myeloma specialists in your area. Just because a particular university is renowned for cancer research, that doesn't necessarily mean they have top multiple myeloma specialists there.
Some questions that come to mind are:
Have you had a bone marrow biopsy yet? There are forms of multiple myeloma that won't show up or will only register slightly in blood and urine tests. The only way to sort that out is to conduct a bone marrow biopsy.
Has anybody discussed the possibility of amyloidosis and/or tested for it?
Do you know your MGUS isotype? (IgG-Kappa, etc).
What are the doctors saying about the lesions found in your brain? Has anybody suggested running a PET/CT to see if you have any cancerous spots in your body and to see if your brain lesions are cancerous?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS & unconfirmed disease (aka limbo)
Hi,
I had a bone marrow biopsy and a bone survey. I am IgA lambda. They think the lesions in my brain are non-cancerous but are venous lakes. Since the bone survey didn't show any skeletal lesions, nothing else was suggested.
The university specialist is a multiple myeloma / blood disorder specialist. At this point I am willing to travel out of state to a really good specialist, so I am open to suggestions.
Amyloidosis was briefly discussed, but work up for it was not performed.
I had a bone marrow biopsy and a bone survey. I am IgA lambda. They think the lesions in my brain are non-cancerous but are venous lakes. Since the bone survey didn't show any skeletal lesions, nothing else was suggested.
The university specialist is a multiple myeloma / blood disorder specialist. At this point I am willing to travel out of state to a really good specialist, so I am open to suggestions.
Amyloidosis was briefly discussed, but work up for it was not performed.
Re: MGUS & unconfirmed disease (aka limbo)
What city/state are you in? Folks can recommend some places in your state or a neighboring state. I think the world of my specialist, Dr. James Berenson in Los Angeles, and he has seen seen many, many different presentations of monoclonal protein disorders. But there are many very capable multiple myeloma specialists spread throughout the country.
I forgot to ask. Did you have a 24-hour urine test and was excess protein and/or Bence Jones proteins found in your urine? If there was excess protein in urine and you have a monoclonal lambda isotype – coupled with polyneuropathy, dizziness, fatigue, and vision problems – you might consider asking for an amyloidosis test.
I forgot to ask. Did you have a 24-hour urine test and was excess protein and/or Bence Jones proteins found in your urine? If there was excess protein in urine and you have a monoclonal lambda isotype – coupled with polyneuropathy, dizziness, fatigue, and vision problems – you might consider asking for an amyloidosis test.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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