I was diagnosed with MGUS in 2015 my doctor has not sent me to any specialists yet. In the beginning I had the bone survey done, blood work, and the 24-hour urine tests. My PCP doesn't like to talk to me about test results, and just said I need testing every 6 months. It took me 8 months for him the tell me I had IgA, and that was because I told him I have family history of multiple myeloma.
I am so frustrated because I have days were my legs hurt so bad and won't cooperate and move like they should. The weakness and tingling in my legs is so embarrassing. I am 32 and should not be going thru this, and my PCP still refuses to discuss my symptoms or anything to help me or answer any questions.
Should I be seeing a specialist and, if so, what specialist should I talk to my PCP about referring me to?
I have Kaiser insurance and they are great for preventative care, but it seems when something is wrong they go down hill in the care they provide. (I am a person not a number.)
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Re: Should I be seeing a specialist if I have MGUS?
I would personally suggest seeing a hematologist / oncologist that specializes in multiple myeloma to go over your current figures and symptoms. Depending on your own preference or because of insurance cost or traveling considerations, you can continue to use your PCP for routine monitoring and then only see the myeloma specialist if your numbers or symptoms or some other event warrants it. That way you will have a relationship and a baseline already established with your specialist, should your disease advance.
I might also add that not all hematologist / oncologists are created equal when it comes to multiple myeloma. You want to see a hematologist / oncologist that specializes in multiple myeloma and deals with many multiple myeloma patients on a daily basis. I would therefore suggest letting folks know on this forum what city you are in and they can make some recommendations of myeloma specialists in your area. You can then check if they are in your insurance network and suggest one or two specialists to your PCP that you would like to visit, provided your insurance requires that you first have a referral to see a specialist.
I might also add that not all hematologist / oncologists are created equal when it comes to multiple myeloma. You want to see a hematologist / oncologist that specializes in multiple myeloma and deals with many multiple myeloma patients on a daily basis. I would therefore suggest letting folks know on this forum what city you are in and they can make some recommendations of myeloma specialists in your area. You can then check if they are in your insurance network and suggest one or two specialists to your PCP that you would like to visit, provided your insurance requires that you first have a referral to see a specialist.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Should I be seeing a specialist if I have MGUS?
I was diagnosed with MGUS late last year and I was immediately referred to a hematologist / oncologist. Even she was clueless about MGUS and multiple myeloma, because as I learned later, they so rarely run into it unless they specialize in it, that they are years behind on what tests to run, etc.
I went to MD Anderson in Houston and had a much better experience, but of course the team there sees this kind of thing every day.
I'd say any doctor who refuses to discuss your lab results with you has no business being a doctor. But regardless, I encourage you to find a good hematologist / oncologist who specializes in myeloma because if the time ever comes when your MGUS does progress to something else, you're going to want it monitored by people who know what they're doing ... and who'll talk to you about it like you deserve to be included in the conversation about your own healthcare.
All my best.
I went to MD Anderson in Houston and had a much better experience, but of course the team there sees this kind of thing every day.
I'd say any doctor who refuses to discuss your lab results with you has no business being a doctor. But regardless, I encourage you to find a good hematologist / oncologist who specializes in myeloma because if the time ever comes when your MGUS does progress to something else, you're going to want it monitored by people who know what they're doing ... and who'll talk to you about it like you deserve to be included in the conversation about your own healthcare.
All my best.
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GinnyD - Name: Ginny
- When were you/they diagnosed?: MGUS
- Age at diagnosis: 37
Re: Should I be seeing a specialist if I have MGUS?
I should add I am located in Rainier, Oregon and currently see doctors in Longview, Washington as they are the closest doctors to me.
I am scheduled to do my repeat labs in October and I am going to make an appointment with my PCP and be stern with him about wanting to see a specialist. He already admitted to me that he consults with a hematologist about my case so I just think I would feel more comfortable with a doctor that knows what they are dealing with.
I am scheduled to do my repeat labs in October and I am going to make an appointment with my PCP and be stern with him about wanting to see a specialist. He already admitted to me that he consults with a hematologist about my case so I just think I would feel more comfortable with a doctor that knows what they are dealing with.
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JPB - Name: Jennifer
Re: Should I be seeing a specialist if I have MGUS?
One of the top places for multiple myeloma specialists in the Pacific Northwest is in Seattle at the Seattle Cancer Care Alliance. Dr. Libby is one of the SCCA myeloma specialists that regularly contributes to this forum, but there are other very well qualified specialists there as well.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Should I be seeing a specialist if I have MGUS?
I live in Portland and have Kaiser as well. I see Dr. Barnett who is a oncologist / hematologist at Kaiser Interstate office. She used to work with Dr Emma Scott at OHSU, who is a multiple myeloma specialist.
I will continue to see my doctor until and/if things change, than I will fight Kaiser for a referral for OHSU since OHSU accepts Kaiser insurance.
I will continue to see my doctor until and/if things change, than I will fight Kaiser for a referral for OHSU since OHSU accepts Kaiser insurance.
Re: Should I be seeing a specialist if I have MGUS?
cslatosch,
Thru Kaiser, were you immediately referred to the hematologist / oncologist, or did they wait for awhile?
I am really curious as I have been fighting with Kaiser about other medical issues. I can't wait until January when I will have an open Kaiser card and then be able to see any doctor that accepts Kaiser insurance instead of going to a Kaiser facility.
Thru Kaiser, were you immediately referred to the hematologist / oncologist, or did they wait for awhile?
I am really curious as I have been fighting with Kaiser about other medical issues. I can't wait until January when I will have an open Kaiser card and then be able to see any doctor that accepts Kaiser insurance instead of going to a Kaiser facility.
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JPB - Name: Jennifer
Re: Should I be seeing a specialist if I have MGUS?
I would agree – seek out a multiple myeloma specialist. It may be a bit of a drive for you, but if you are going every 3 or 6 months, it shouldn't be that bad. Originally I was seen by a regular hematologist / oncologist (his nurse didn't even know what MGUS was), and even though he was very nice and engaging, his treatment for me was much different than that of my myeloma specialist. I have severe osteoporosis which is being treated under the case of the specialist.
One advantage is that if you progress, you will already be established with a multiple myeloma specialist. Hopefully that will never happen, but there is a reassuring factor that comes with being seen by a specialist. You should always get a second opinion anyway, so why not get that opinion from a specialist?
Good Luck
One advantage is that if you progress, you will already be established with a multiple myeloma specialist. Hopefully that will never happen, but there is a reassuring factor that comes with being seen by a specialist. You should always get a second opinion anyway, so why not get that opinion from a specialist?
Good Luck
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wbayman1959 - Name: WendyB
8 posts
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