[Multibilly]

Re: I'm new - have paraprotein of 1 gram

by Multibilly on Wed Mar 30, 2016 8:48 am

Ozziegirl,

Let's say for the time being that you do have CAD. If you look at the more benign treatments for CAD, it is simply to wear warmer clothes and get more folic acid in one's diet.

http://emedicine.medscape.com/article/135327-treatment

I'm not sure that I would sign up for a splenectomy or some of the more extreme drug treatments like Rituxan (rituximab) unless I couldn't manage the feeling of being cold with the above measures and the condition was just making me miserable.

If I suspected that I had CAD, I know that my onc or my GP would gladly order the test for me (but may question the test if my hemoglobin and RBC levels were normal). The test and the conditions under which one gets tested is explained in these links:

https://labtestsonline.org/understanding/analytes/cold-agglutinins/tab/test/

http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/8992

[Ozziegirl]

Re: I'm new - have paraprotein of 1 gram

by Ozziegirl on Wed Mar 30, 2016 7:50 pm

Thank you for your reply, Multibilly. I will certainly read those links you sent.

I put more clothes on, but it's a deep inside feeling of cold, and I have put on 5 kgs! I see that as a plus, some weight to fall back on if needed.

I will have to learn to be more patient, but I don't see my specialist until June. Meanwhile I will have the tissue biopsy in a few weeks time.

Have a lovely day, and thank you again.

Ann

[Ozziegirl]

Re: I'm new - have paraprotein of 1 gram

by Ozziegirl on Fri May 06, 2016 5:09 am

I am waiting on a biopsy to rule out amyloidosis. I am having it done on the 16th of May.

I had a hip replacement 3 years ago and the orthopaedic surgeon said he had a lot of trouble replacing my hip due to my bones being very strong and very hard. Yep, go figure. He said I had bones of a 25 year old and I was 62! I thought that was good!

My specialist is suspicious as I have cold feelings in my body and also tingling in my feet. Kappa is 16 and lambda 7. Ratio out of whack 2.29. Reference range is 0.25 - 1.65. My specialist said if the orthopedic surgeon said my bones were hard, then I didn't have multiple myeloma, but wants to rule out amyloidosis.

Best wishes. Ann.

[NStewart]

Re: I'm new - have paraprotein of 1 gram

by NStewart on Fri May 06, 2016 2:49 pm

Ann,

It seems to be taking forever to get all of your testing done, but that seems to be the way with this group of conditions.

Just a thought about the comment that you had "hard bones." That was 3 years ago. That doesn't mean that things might have changed during that time. Don't let any of your doctors discount what you are feeling and going through.

Keep on pushing,
Nancy in Phila

[Ozziegirl]

Re: I'm new - have paraprotein of 1 gram

by Ozziegirl on Fri May 06, 2016 7:48 pm

Thanks Nancy.

Yes it does seem forever, all this waiting does. Nothing for one's anxiety!

So the biopsy will be In just over a week, then I will have to wait for results!

Yes, I agree, just because my bones were tough 3 years ago, doesn't mean things can't change .

I don't see the multiple myeloma specialist again till the end of June, my 3 months appointment.

Thanks for your kind word.
Ann

[Ozziegirl]

Re: I'm new - have paraprotein of 1 gram

by Ozziegirl on Wed May 18, 2016 2:35 am

Well, I had the biopsies of the rectum on Monday, 16 May, 2016, just 2 day's ago. The specialist said it would take up to a week to get the results. I didn't suffer any pain or problems.

I received an email today, just 2 days later, just letting me know that the biopsy was "Normal" no amyloidosis. It was such a relief!.

So I don't see the haematologist for my three monthly check up until 30th June. So back to the drawing board.

Thanks for advice and comments that I have received. I feel I can take a breath for awhile.