Confused.....

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RE: Confused.....

by Quincypp on Sun Jul 08, 2012 04:49 PM

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Thanks for your reply. I am meeting my new GP soon - and will discuss all with him. He is young so hopefully he is up to speed on this new FLC test. My old dr recommends him highly and says he is well connected to many specialists. While I don't want to dwell on the what if's I do want to figure out what is wrong so I can at least try to treat the symptoms or the condition and not get dismissed (I had one dr who said loose weight and take tyelenol for the fevers) which can be so frustrating as I had several times where I felt so awful and exhausted. 2 years ago I was an active 39 year old who worked out 3-4 times a week and kept up with my 3 kids - swimming, biking etc. Now I barely go to work (work from home mostly) and am exhausted all the time.  I'll see what my new GP suggests - and yes will accept the fact if he thinks its just a watch and wait attitude. I just find it funny that they say this MGUS is not symptomatic yet reading from others who have this have several of the same symptoms I am experiencing. Thanks again! Will post if I get any updates.

RE: Confused.....

by pretzel on Sat Jul 28, 2012 05:20 AM

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Hi confused

I was diagnosed in 1995 with stage 3 mm. The tests they used then were blood tests 24 hour urin collection and a bmb. Along with x rays they found abnormal plasma cels in the urin bone marrow and abnormal blood results the xrays showed leisons on several of my long bones. The tests at that time did not show spike results or light chain ratios, at least the copies i asked for did not have them they do now. Im not really sure but i remember speaking to someone in the hospital back then that it may be possible to take a bmb from another area. You might find out more information going to oncology/hematology doctor who has treated people with mm and give you a second opinion. If it is mm waiting too long might not be a wise move. When i ws diganosed it was my gp. That saw that my blood tests he was taking to monitor my chlos. And tryglis. Were showing in additional tests taken at the same time were becomming abnormal he went back 6 months and compared the numbers and sent me toa oncologist and found i was in stage 3 mm. So time is very important. Hope this info. Helps one more thing try contacting the mm foundation for further info. I did they were vere helpful good luck

Pretzel

 

RE: Confused.....

by Quincypp on Wed Aug 29, 2012 01:58 AM

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I finally met my new family dr today. I am pleased with his decision that my last blood tests need follow up and that he feels I need a 'better" hematologist - his exact words. He said an abnormal lambda/kappa ratio is not something to be ignored and usually used as a marker for MM. He wants to review my entire chart over the next couple of days and will get back to me but based on our initial conversation today he feels its something to be looked into and is surprised it took so long for them to do the FLC blood test. He also pointed out to abnormal globlulin levels from over a year ago should have been investigated. he also said my FLC test wasn't complete as there were some results missing. He wants to review all the tests I have done so far and what needs to be done. I am relieved he didn't brush me off and validated that these results show something is wrong and needs further follow up.

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