If PCP = personal care physician, I would actually think that you would want to rather see a hematologist/oncologist that really knows multiple myeloma for your follow up test. Your PCP is just likely to refer you back to a hematologist for all the lab tests you would normally get to verify something like multiple myeloma (at least that is what mine did).
It also sounds like you might want to find a different hematologist that might be more sympathetic to your angst and symptoms. It sounds like you've done an SPEP, IFE, metabolic panel, 24 hour UPEP, immunoglobulin tests and a freelite chain assay already. These are the fundamental lab tests. Unless something jumps out on these basic lab tests, you wouldn't want to sign up for a bone marrow biopsy or skeletal xray survey. If you are still feeling uncertain about all this, why not get copies of all your labs and seek a second opinion from another specialist to put your mind at ease?
Hope you find out what is ailing you.
Forums
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: new member/m-spike question
Hi Butterfly, I have been reading this thread and it seems that the mgus dx has been ruled out, but have you considered going to an infectious disease specialist or an internal medicine specialist with your symptoms. I see that you were tested for Lyme disease, which is a tick borne infection. There are other diseases carried by ticks or mosquitoes (West Nile virus for example). Also, could your dizziness somehow be related to your ear infections?
It sounds like you are experiencing a lot of problems and I am sure it would be worth it to investigate more. Good luck with this!
It sounds like you are experiencing a lot of problems and I am sure it would be worth it to investigate more. Good luck with this!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: new member/m-spike question
Thank you very much for responding, Nancy.
Yes, I was tested for Lyme, but not West Nile. I actually haven't been bitten by a tick since I was about 10 (as far as I know). I had a horse that had west nile (and survived), so I am particularly aware of that one.
I'm not sure about the dizziness being related to my ears, but that could be possible. I'm 39 and have had these infections since childhood. I have a very high pain tolerance and usually do not feel the pain they cause until the eardrum has actually ruptured or near-ruptured.
My dizziness has been worsening over time, gradually....at the same rate that my back/spine pain has been progressing. I have one spot on my mid-upper back along spine that is very sore and tender when palpated. I also have developed painful arms and wrists, and pains in my head...mostly on left side and at base. My skin is prickly/tingly, I am very tired...oh brother!
I won't go much further on, since I guess general consensus agrees that mgus is ruled out
Thanks again for your insight....it really is much appreciated.
Yes, I was tested for Lyme, but not West Nile. I actually haven't been bitten by a tick since I was about 10 (as far as I know). I had a horse that had west nile (and survived), so I am particularly aware of that one.
I'm not sure about the dizziness being related to my ears, but that could be possible. I'm 39 and have had these infections since childhood. I have a very high pain tolerance and usually do not feel the pain they cause until the eardrum has actually ruptured or near-ruptured.
My dizziness has been worsening over time, gradually....at the same rate that my back/spine pain has been progressing. I have one spot on my mid-upper back along spine that is very sore and tender when palpated. I also have developed painful arms and wrists, and pains in my head...mostly on left side and at base. My skin is prickly/tingly, I am very tired...oh brother!
I won't go much further on, since I guess general consensus agrees that mgus is ruled out
Thanks again for your insight....it really is much appreciated.
Re: new member/m-spike question
Thank you again, Multibilly.
I really do appreciate your input.
I actually wrote a reply, but accidentally erased it...ugh.
I do think that something is brewing.
I do plan on trying to find an answer if I don't get discouraged in the meantime.
I have noticed that over the last year & half my calcium, BUN, Creatinine, and total protein levels have all been steadily rising. And with the symptoms worsening, I feel something must be causing it all, even if it isn't mgus, multiple myeloma, or the sort.
If I ever do find what it is, I plan to post a follow-up here in case there's someone like me in a similar situation.
I never did understand the actual anguish of a person that can have so many problems and complaints yet could never be diagnosed. I always assumed that they were a bit "off". I guess I'm now one of those people So it is true what they say about never fully knowing a person until you've walked in their shoes.
We all live and learn.
Thanks again....and I wish you the best of success in your treatments.
I really do appreciate your input.
I actually wrote a reply, but accidentally erased it...ugh.
I do think that something is brewing.
I do plan on trying to find an answer if I don't get discouraged in the meantime.
I have noticed that over the last year & half my calcium, BUN, Creatinine, and total protein levels have all been steadily rising. And with the symptoms worsening, I feel something must be causing it all, even if it isn't mgus, multiple myeloma, or the sort.
If I ever do find what it is, I plan to post a follow-up here in case there's someone like me in a similar situation.
I never did understand the actual anguish of a person that can have so many problems and complaints yet could never be diagnosed. I always assumed that they were a bit "off". I guess I'm now one of those people
So it is true what they say about never fully knowing a person until you've walked in their shoes.We all live and learn.
Thanks again....and I wish you the best of success in your treatments.
Re: new member/m-spike question
Well, I see that Dr. Valent agreed with the recommendation to test proteins again in six months, so in other words, MGUS not completely ruled out.
West Nile virus is spread by mosquitoes, not ticks. Hope you pursue these medical problems further too!
West Nile virus is spread by mosquitoes, not ticks. Hope you pursue these medical problems further too!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: new member/m-spike question
Nancy Shamanna wrote:
> Well, I see that Dr. Valent agreed with the recommendation to test proteins
> again in six months, so in other words, MGUS not completely ruled out.
> West Nile virus is spread by mosquitoes, not ticks. Hope you pursue these
> medical problems further too!
Thank you!
I do plan on checking again as Dr. Valent recommended, but I may also look into a new hematologist that will take a bit more time in explaining it all to me so as to avoid this confusion.
I was just concerned that maybe my doctor/hem should have done more testing due to my symptoms, but I feel more at ease now.
Thanks again to you all for taking the time for my questions and concerns.
(And I did mean to say I knew about the west nile/mosquito, not ticks....woops!)
> Well, I see that Dr. Valent agreed with the recommendation to test proteins
> again in six months, so in other words, MGUS not completely ruled out.
> West Nile virus is spread by mosquitoes, not ticks. Hope you pursue these
> medical problems further too!
Thank you!
I do plan on checking again as Dr. Valent recommended, but I may also look into a new hematologist that will take a bit more time in explaining it all to me so as to avoid this confusion.
I was just concerned that maybe my doctor/hem should have done more testing due to my symptoms, but I feel more at ease now.
Thanks again to you all for taking the time for my questions and concerns.
(And I did mean to say I knew about the west nile/mosquito, not ticks....woops!)
Re: new member/m-spike question
My husband has "monoclonal gammopathy of undetermined significance". with an M spike that seems to be on the rise. He has also been diagnosed with MAC.
Could the MAC be causing the M spike to rise? He used the 3 antibotics combating MAC for two months and then went off them he is now using probiotics, would like to stay off the antibotics if we can.
The blood doctor just called yesterday to say that the M spike has gone up a little. We have been watching it for about a year.
The blood doctor mentioned if it continues to rise we would have to do a bone marrow test.
Could my husband take something to maybe try and lower the M spike, instead of just waiting to find out 6 months down the road that he needs a bone marrow test !!!
Could the MAC be causing the M spike to rise? He used the 3 antibotics combating MAC for two months and then went off them he is now using probiotics, would like to stay off the antibotics if we can.
The blood doctor just called yesterday to say that the M spike has gone up a little. We have been watching it for about a year.
The blood doctor mentioned if it continues to rise we would have to do a bone marrow test.
Could my husband take something to maybe try and lower the M spike, instead of just waiting to find out 6 months down the road that he needs a bone marrow test !!!
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linwir
18 posts
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