[Ozziegirl]

I'm new - have paraprotein of 1 gram

by Ozziegirl on Mon Dec 14, 2015 10:43 pm

I live in Australia. This winter was very cold and I suffered from very cold feet and tingling. I went to the GP and he said it's been a cold winter and wait till we get warmer weather. I did that, but still had cold feet. My GP referred me to a physician who sent me for some tests and took blood to be looked at. I went and had an ultrasound to have the circulation In my legs checked and also went to a neurologist who did nerve conductive tests on my feet. Both these tests came back normal.

I went back to the physician who told me I had a paraprotein showing in my blood of 1 gram. He just said nothing to worry about, found it by accident and of no consequence. He also said it would not be causing any symptoms, so my cold feet, tingling thing is probably from my fibromyalgia. He did say people with myeloma have this protein In high values. He got me to do a random urine sample and he sent it to be checked, telling me to go to my GP for results and he didn't need to see me anymore!

Well I'm not the sort of person who can just go off and forget about things and not worry, actually I get worse and want to know more. I went back to the GP and he said my urine was clear and this is all probably a red herring!! Not to worry, come back end of January, and I will send you to a hematologist just to be on the safe side. Have a lovely Christmas, goodbye !!

Well of course I started googling and came across the Beacon and all the lovely kind people on hear who write back to others and I'm wondering if someone could answer me as I'm freaking out and feeling scared. I know I don't have much information to share, but I still have this weird feeling in my feet and am having trouble being positive and Christmas is going to be sad as I have this cloud over my head!

Thank you.

[Multibilly]

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

by Multibilly on Tue Dec 15, 2015 10:38 am

Hi Ozziegirl,

Welcome to the forum.

It sounds like your doc was trying to rule out various diseases that may be causing the tingling in your feet. In the case of multiple myeloma, MGUS, and related plasma cell disorders, this tingling can be due to a symptom known as peripheral neuropathy.

When you say you have "1 gram" of paraprotein, you need to specify in what volume of blood that gram of paraprotein was present (e.g. 1 g/dL or 1 g/l). It would be good if you can find out which it is from your lab results at the doc's office.

A paraprotein (aka M-spike) value of 1 g/l is absolutely tiny. However, a value of 1 g/dl is also quite small. If the M-spike is 1 g/l, then this could just be a measurement error. But if it is g/dl, then it may indeed be a valid reading, but again it is quite small. Either reading could indicate a non-cancerous condition called MGUS which has only a 1-2% chance per year chance of evolving into multiple myeloma. People with MGUS are usually none the worse for it, but sometimes they have symptoms such as peripheral neuropathy. In any case, I would try not to fret about this over the holidays.

It's good that your doc is going to have you follow up with a hematologist to be on the safe side. The hematologist should be running another serum protein electrophoresis (SPEP) test (the test that gave you the "1 gram" reading), as well as a serum immunofixation (IFE) test, a quantified immunoglobulin test, and a serum free light chain (FLC) assay test. That should provide him / her with a much clearer picture if this is MGUS or not.

Hope this helps a bit. Happy holidays!

[Ozziegirl]

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

by Ozziegirl on Tue Dec 15, 2015 6:09 pm

Thank you so much for replying to me Multibilly, and for your welcome. I really appreciate you taking the time and care to do so. When I was searching this site I read a lot of your posts and answers and I was hoping you might answer me.

I will try and find out what volume that "gram" of protein was measured in. I will contact the doctors today.

The strange feeling I get in my feet is like a padding around my feet and feels cold. I had the neuropathy nerve conductive test, which the neuro doctor said was fine! But on reflection he said come back in 12 months and I did wonder why he said that if all was that fine!

I tend to go into panic mode a bit these days as most of my life I have been dealing with medical issues, including breast and uterine cancer. Both my parents died very early, mum at 38 and dad at 44, I think this set my mind up for failure in the health department.

I will get back with the measurement of the volume.

Have the best day.
Thank you.

[Ozziegirl]

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

by Ozziegirl on Thu Dec 17, 2015 6:17 am

Hi there again Multibilly,

I rang the specials who organised the blood test and he looked up the result and said " it was measured 1 gram per litre, 1 g/l. Hope that makes sense to you.

I googled it and apparently it can be measured at that stage.

I do hope this is not the start of something in the future, it has certainly rattled me!

I have dealt with cancer of the breast and uterus many years ago in my 40's which unfortunately has made me an anxious type person, I just really feel that I wish I never knew about it. That way, I could just live In denial Silly way to think, I know, as what I have read it's a good thing to be on top of things in the myeloma world.

Thank you for taking the time to respond to me.

Kindest regards
Ann

[kerrirunnergirl]

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

by kerrirunnergirl on Thu Dec 17, 2015 9:12 am

Hi Ozziegirl,

Welcome to the forum.

I wanted to speak to the symptoms you are having. My husband had the same symptoms related to Velcade. He tried Lyrica (pregabalin) and Neurontin (gabapentin) with no relief.

He started on 20 mg of Cymbalta (duloxetine) and it has been a miracle drug. Symptoms subsided almost immediately and he is able to work and walk and sleep without those nagging symptoms.

Hope this helps.

Have a very Merry Christmas.

kerri

[Multibilly]

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

by Multibilly on Thu Dec 17, 2015 9:16 am

Hi Ann,

Again, this is an oh-so-tiny M-spike. When you see the hematologist, you will want to run a serum immunofixation (IFE) test, along with the other tests I mentioned. The IFE won't tell you the actual amount of any monoclonal protein in your blood, but it will tell you pretty accurately if any monoclonal protein is even present in your blood and if the M-spike reading is just a red herring or not.

[Ozziegirl]

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

by Ozziegirl on Thu Dec 17, 2015 5:32 pm

Thank you Multibilly,

I will do that when I get in to see a haematologist after Christmas, and certainly follow up every­thing.

The test certainly needs repeating. I have so many symptoms. I am recently out of hospital after herniating a disc in my back. I had a steroid injection but it hasn't helped. I will need a back op so I will need to know my bones are ok. I also can't stand air conditioning anymore and we are having 40 degrees C (104 degrees F) and over in Oz at the moment, so many weird things that are new to me have been happening.

Wishing you a lovely happy time over the festive season and thank you once again for taking the time to answer me. It has meant a great deal. Also I wish everyone else on this forum all the very best for Christmas and may we all stay well.

Kind regards
Ann

[Ozziegirl]

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

by Ozziegirl on Thu Dec 17, 2015 7:57 pm

Thank you, Kerri, for your message. I already take Lyrica for fibromyalgia.

I haven't been officially diagnosed yet, so I'm going to have to learn how to live in the moment, as all this worry is taking it's toll. I appreciate you answering me.

Thanks Ann

[mikeb]

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

by mikeb on Mon Dec 21, 2015 12:47 pm

Hi Ann,

First of all, apologies for my late reply to this thread. I hope you are still reading it. I'm several days behind in reading the Forum here.

I noticed that you said that you had breast cancer and uterine cancer earlier. I wonder if the problems you are having with your feet could be delayed-onset peripheral neuropathy from the treatments you received for those previous cancers years ago?

I'm not sure if peripheral neuropathy works like that. But I do have a friend who had leukemia in her 20's and breast cancer several years ago, who is having issues that have cropped up recently that appear to be related to the chemotherapy she received years ago. The biggest problems for her right now are cardiac problems, not peripheral neuropathy, though.

As usual, you've gotten great information and advice from multibilly. Just try to relax, enjoy Christmas, and then get retested for SPEP in January.

Mike

[Ozziegirl]

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

by Ozziegirl on Mon Dec 21, 2015 7:22 pm

Thank you so much for your reply, Mike.

When I had breast cancer, I was fortunate enough not to need any treatment as it was found so early, it was deemed to be microscopic and I was given the option of having breast removal with reconstruction, so I can't blame that for this weird thing in my feet!

Can you please tell me what SPEC means, I feel like I need a university degree to understand the terminology!! Lol I am so grateful for any advice I can get, I am trying to take one day at a time until I see a specialist after Christmas.

You have a lovely Christmas also.

Regards, Ann