Good Day,
Want to thank you Doctor and fellow myeloma friends for your thoughts. I am sorry I sounded a bit frustrated. We had also put our 17 year old pet down this week. I have acquired von willebrand factor bleeding disorder as well as a factor 8 dificiency. I have been recently tested for amyloid. The fat pad biopsy was negative. I am concerned that the test might be wrong. My other kidney symptoms are completely colorless urine, frequent, ocassional left flank pain, foamy rine at times, edema. Dont have elevated sugar levels. Thank you again.
Forums
Re: urine immunnofixation electrophoresis
So you ask about your
> abnormal labs & tests. Never once have a had a explanation for the
> abnormal labs & tests. Then they tell you to go to another doctor
> because they can't provide the answers. You end in a yo yo game. So after
> a multiple of doctors, multiple tests, multiple $$$. I am still sitting in
> the same boat where I started without even any relief of my symptoms. I
> know things could be alot worse. I am blessed. I just think they can come
> up with a better solution to monitor multiple myeloma & mgus. I also
> hope there will be a cure for all of you in the very near future.
Not sure what your insurance demands of you here, but once I got an initial suspicious diagnosis from my GP that something was wrong with my protein and globulin levels (bless my GP's heart), I just went to an oncologist/hematologist he referred me to that gave me a copy of all the test results he ordered and explained them in detail. While he was a fine doc, I then went on to find two other oncologists/hematologists that could do the same thing, but were more focused on blood cancers and specifically multiple myeloma. All of them could run the labs at their own facilities (major hospitals). While my insurance doesn't require a referral from a GP to go see a specialist, if yours does, I would think that once you have a referral and are working with a specialist you like, you could just then go seeing that same specialist for ongoing tests without the need for ongoing referrals and not deal with the GP for multiple myeloma (except for your routine illnesses and physicals and to update him when you do see him for a physical). BTW, this is perfectly fine with my GP as he is out of his league on this. I haven't seen my GP since this all started, but he does get copied on all my reports and specialist writeups.
So, you should be able to have just one one doc/specialist that you see for your multiple myeloma that should be able to cover every aspect of your disease, including getting the labs and explaining them to you.
As far as getting copies of lab reports, some places are better than others. I deal with one university here that puts all my lab results up online on a secure site where I can see them just as soon as the doc sees them....wonderful system. Other places, I need to have them faxed or emailed to me if I don't want to wait to be debriefed by the doc first. I also always get a CD of any radiology exam the day the exam is performed. All this makes it easier to share my history with other docs.
It's also good to have a written set of questions that you can go through with your specialist when you see him. If he/she can't answer your questions or won't take the time to do so, move on until you do find somebody that can (and that lives and breathes multiple myeloma)!
With now likely having smoldering multiple myeloma (I'll know for sure later this week), I am resigned to getting tested every couple of months for the next year (half hour out of my day every couple of months for serum and urine tests) and then chatting with my specialist (likely over the phone) to get the results afterwards. In one year, I will also get a follow up skeletal survey. After the first year, the frequency of testing will drop. If something goes south, then I expect I will be going into his office for a deeper debrief and to come up with a plan of action.
In the big scheme of things, this doesn't seem like a much of hassle if I can catch a progression to multiple myeloma early. Right now, I count myself extremely lucky if this all I have to deal with with regards to multiple myeloma for the rest of my life...it is in fact what I am praying for.
> abnormal labs & tests. Never once have a had a explanation for the
> abnormal labs & tests. Then they tell you to go to another doctor
> because they can't provide the answers. You end in a yo yo game. So after
> a multiple of doctors, multiple tests, multiple $$$. I am still sitting in
> the same boat where I started without even any relief of my symptoms. I
> know things could be alot worse. I am blessed. I just think they can come
> up with a better solution to monitor multiple myeloma & mgus. I also
> hope there will be a cure for all of you in the very near future.
Not sure what your insurance demands of you here, but once I got an initial suspicious diagnosis from my GP that something was wrong with my protein and globulin levels (bless my GP's heart), I just went to an oncologist/hematologist he referred me to that gave me a copy of all the test results he ordered and explained them in detail. While he was a fine doc, I then went on to find two other oncologists/hematologists that could do the same thing, but were more focused on blood cancers and specifically multiple myeloma. All of them could run the labs at their own facilities (major hospitals). While my insurance doesn't require a referral from a GP to go see a specialist, if yours does, I would think that once you have a referral and are working with a specialist you like, you could just then go seeing that same specialist for ongoing tests without the need for ongoing referrals and not deal with the GP for multiple myeloma (except for your routine illnesses and physicals and to update him when you do see him for a physical). BTW, this is perfectly fine with my GP as he is out of his league on this. I haven't seen my GP since this all started, but he does get copied on all my reports and specialist writeups.
So, you should be able to have just one one doc/specialist that you see for your multiple myeloma that should be able to cover every aspect of your disease, including getting the labs and explaining them to you.
As far as getting copies of lab reports, some places are better than others. I deal with one university here that puts all my lab results up online on a secure site where I can see them just as soon as the doc sees them....wonderful system. Other places, I need to have them faxed or emailed to me if I don't want to wait to be debriefed by the doc first. I also always get a CD of any radiology exam the day the exam is performed. All this makes it easier to share my history with other docs.
It's also good to have a written set of questions that you can go through with your specialist when you see him. If he/she can't answer your questions or won't take the time to do so, move on until you do find somebody that can (and that lives and breathes multiple myeloma)!
With now likely having smoldering multiple myeloma (I'll know for sure later this week), I am resigned to getting tested every couple of months for the next year (half hour out of my day every couple of months for serum and urine tests) and then chatting with my specialist (likely over the phone) to get the results afterwards. In one year, I will also get a follow up skeletal survey. After the first year, the frequency of testing will drop. If something goes south, then I expect I will be going into his office for a deeper debrief and to come up with a plan of action.
In the big scheme of things, this doesn't seem like a much of hassle if I can catch a progression to multiple myeloma early. Right now, I count myself extremely lucky if this all I have to deal with with regards to multiple myeloma for the rest of my life...it is in fact what I am praying for.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: urine immunnofixation electrophoresis
Regarding so many years of abnormal tests, has your dr. Ordered a beta 2 microglobin, this is a tumor marker test, it should be able to give you peace of mind as to how far you have progressed.this simple blood test should answer your questions.
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Anitasgirl
13 posts
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