@ torimooney. I too am headed to the NIH and Dr. Landgren's Natural History study as soon as I can get all my test results to them and they schedule a date for me to go. I have been diagnosed with MGUS but have several abnormal tests which suggest that I could progress to multiple myeloma. It is along way for me to travel, as I live in Portland, OR but I want to participate in the study that may not only help me (with a second opinion, etc) but others in the future.
My best to you!
Toni
Forums
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tonil - Name: Toni
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 2/2012
- Age at diagnosis: 57
Re: diagnosis confusion
ToriMooney and Toni
Glad you went and are going to NIH. You just can't go wrong there. Dr Landgren and his associates Dr Kwok and Dr Rochewsky are all great. And we can't forget the Nurses MaryAnn and Marcia that make it all happen. I am going for a F/U visit in August. I am actually looking forward to seeing them! How messed up is that??
Best Wishes
Art
Glad you went and are going to NIH. You just can't go wrong there. Dr Landgren and his associates Dr Kwok and Dr Rochewsky are all great. And we can't forget the Nurses MaryAnn and Marcia that make it all happen. I am going for a F/U visit in August. I am actually looking forward to seeing them! How messed up is that??
Best Wishes
Art
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: diagnosis confusion
Dear Tori,
thanks so much for writing..I have an instinctual feeling that i am further along than my tests show. The continual pain in my hips (I perceive it as in my bones in my pelvis) seems to be insisting that I pursue further help.
My Mspike (serum) is betraying all of my other rising numbers so I am not sure what that means. I would think that I might be a non-secretor, but I am spilling Bence Jones at numbers that continue to rise fairly rapidly for the last 8 weeks.
I sent my records to NIH and need to send the consent tomorrow so I can get moving..I do have an appointment. for a second opinion at Hopkins on Tuesday.
Thank you again for writing me and I wish you all the best. Please let me know how you are doing.
peace and wellness,
barb
thanks so much for writing..I have an instinctual feeling that i am further along than my tests show. The continual pain in my hips (I perceive it as in my bones in my pelvis) seems to be insisting that I pursue further help.
My Mspike (serum) is betraying all of my other rising numbers so I am not sure what that means. I would think that I might be a non-secretor, but I am spilling Bence Jones at numbers that continue to rise fairly rapidly for the last 8 weeks.
I sent my records to NIH and need to send the consent tomorrow so I can get moving..I do have an appointment. for a second opinion at Hopkins on Tuesday.
Thank you again for writing me and I wish you all the best. Please let me know how you are doing.
peace and wellness,
barb
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barb
Re: diagnosis confusion
i have my fingers crossed for you. hope you are accepted into the study and get good results. let me know how it goes for you.
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Anonymous
Re: diagnosis confusion
Got into the Natural History Study at NIH-appt. not til September-hoping for a cancellation...
peace,
barb
peace,
barb
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barb
Re: diagnosis confusion
Barb
That great to hear. Wow they must be getting busy. It only took me a couple weeks to get in there back in February. I know that's a long time to wait to get some answers but, you won't regret it. Feel free to ask any questions you might have pre- visit. I may be able to answer them based on my experience.
Best of Luck
Art
That great to hear. Wow they must be getting busy. It only took me a couple weeks to get in there back in February. I know that's a long time to wait to get some answers but, you won't regret it. Feel free to ask any questions you might have pre- visit. I may be able to answer them based on my experience.
Best of Luck
Art
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: diagnosis confusion
Hi Art.
Thanks so much-I am excited and sad..I'm sure u get that..
I am headed to Hopkins today for a consult with Dr. Ivan Borello...We'll see what he says..
Seems like I may have Light Chain Myeloma tendencies..
As I am not actually a Dr-I only play one in my life-perhaps I should wait and see what the experts say..
Wishing you wellness Art,
barb
Thanks so much-I am excited and sad..I'm sure u get that..
I am headed to Hopkins today for a consult with Dr. Ivan Borello...We'll see what he says..
Seems like I may have Light Chain Myeloma tendencies..
As I am not actually a Dr-I only play one in my life-perhaps I should wait and see what the experts say..
Wishing you wellness Art,
barb
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barb
Re: diagnosis confusion
Barb, I'm curious to know how long it took to get the NIH appointment.
I've contacted Dr.Landgren on May 15 and, I'm having my records sent there and hoping there won't be such a long wait.
I've contacted Dr.Landgren on May 15 and, I'm having my records sent there and hoping there won't be such a long wait.
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Stan W. - Name: Stan
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: SMM-April 2012
- Age at diagnosis: 58
Re: diagnosis confusion
@ Stan - Hi
I just heard from NIH today via email saying that they had received my records (I have MGUS) and listing 4 appointment. dates for the MGUS Natural History Study. These dates were in Sept. and early Oct. I choose Oct. 2 and 3rd to go to NIH. I think these are the soonest appts. available as they are so busy. I sent a followup email yesterday to see if they had received my records and Dr. Mark R. emailed me back followed by another email from a Myeloma fellow Dr. Elisabet M.
Hope this helps.
Toni
I just heard from NIH today via email saying that they had received my records (I have MGUS) and listing 4 appointment. dates for the MGUS Natural History Study. These dates were in Sept. and early Oct. I choose Oct. 2 and 3rd to go to NIH. I think these are the soonest appts. available as they are so busy. I sent a followup email yesterday to see if they had received my records and Dr. Mark R. emailed me back followed by another email from a Myeloma fellow Dr. Elisabet M.
Hope this helps.
Toni
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tonil - Name: Toni
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 2/2012
- Age at diagnosis: 57
Re: diagnosis confusion
Hi Stan,
I too, have to wait til Sept 4/5 for my appointment. Those were the earliest dates they had when they contacted me.
Wishing you all the best,
barb
I too, have to wait til Sept 4/5 for my appointment. Those were the earliest dates they had when they contacted me.
Wishing you all the best,
barb
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barb
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