[louise1969Participant]

Hi Tony, so sorry for the delay, I was not able to look in, the keyboard was not showing, so frustrating, I do understand how helping others helps you but I still think it’s nice and kind etc of you, I asked my doctor what the raised beta 1 and beta 2 meant and she said they are nothing to worry about and it could be my diebetes, she said they didn’t find the protein they were looking for so don’t worry, it’s hard not to though when I have so many issues going on, spiking blood pressure and pulse, high protein in kidneys, random nosebleeds, lots of micro blood in urine etc, my scan for the kidneys and bladder is on wed and I will be seeing my proper dr on Thursday so I’ll discuss it with her as she seems more knowing than this particular one, I’m worrying about amylodosis as well, that sounds even more scary, do they look for paraprotein with that as well or a different type, thank you again for all your help and time , take care my lovely xx

[louise1969Participant]

KH thank you so much, you really are so reassuring , and that’s definitely what I need right now, I just can’t seem to move on until I know for sure what is happening, something is obviously wrong, my esr and crp markers are high so need to get to the bottom of it all, I’ll let you know how my scans go on Wednesday, thanks again my lovely xx

[tony642Moderator]

Hi Louise,

I know this is a really scary time for you, and the worst thing is not knowing what is happening, but on the other hand, because they have not been able to identify what the problem is, it is good in one way, that if you had full-blown MM, it would have shown up straight away. Therefore as they are unable to determine exactly what it is, that hopefully will give you some comfort that it is hopefully nothing serious to worry about!

I found that the more I knew about the disease, and the more information that I had, the better it helped me deal with it in my head. And I suggest that if you think of a question or an issue to discuss with your consultant, write it down as soon as you have thought of it and take a list of things with you to ask when you see them, otherwise I will guarantee that you will forget on the day.

The hard part is the waiting, but there is nothing you can do but wait! Try and take your mind off it with distractions, I know it helps to try and get it out of your mind for a while.

Keep your chin up and try and stay positive.

keep in touch.

Regards, Tony

[mulberryParticipant]

Hi Louise
We all know & understand the fear factor you are experiencing right now, you are in the right place to get help, although you’ll need more information from the other tests you’re going through.
As others have said, it is very positive that your electrophoresis test did not show a monoclonal spike, it does for the majority of us.
You asked about raised beta 1 and beta 2 globulins. These are 2 of 4 types of globulins made in your liver by your immune system. The beta type has 2 peaks, beta 1, made up of something called transferrin, and beta 2 made up of IgA, IgM & sometimes IgG. These Ig s are very familiar to myeloma patients as most of our cancers are either IgG or IgA (rarely any of the others). I know a little about raised beta levels since I had raised beta 2 levels at diagnosis in 2018. However although raised beta1 & beta2’levels might be found with myeloma, they can also be found in diabetics, so your diabetes may explain this? Also it can be found with a variety of other conditions such as Cushing’s disease, iron deficiency anaemia, kidney disease, and, as I had, hypothyroidism.
I hope this helps, and your results turn out to be caused by something more benign!
Jane

[louise1969Participant]

Oh Jane, thank you so much, no one seems to know anything about the beta 1 and 2 , even this doctor I spoke to was pretty vague, my igg although in normal range was still a bit high I thought, 12.9 (normal is 7-16) and my Iga was above normal at 6.18 (normal is 0.70-4.00) so those figures did worry me but maybe these are the raised beta 1 and 2 , I do have diebetes as you know and fatty liver disease and wonder if both are reasons for this, I wish I understood what the electrophoresis means cos I still don’t get why it was normal when my iga was higher than normal, after having cancer 4 years ago I literally understand the ins and out of that disease, but myeloma is something that I don’t think I’ll ever understand, it seems so involved and complicated, this is why it helps talking to people on here, you have all been so helpful and I admire you for knowing anything about the beta 1 and 2 cos I literally can find nothing lol, thank you for putting my mind at rest hun, hope you are ok? Xx

[mulberryParticipant]

Hi Louise, my life as I knew it felt like it had vanished 4 1/2 years ago, it was a very scary time. I wish I’d realised that I even had a chance of feeling as well as I do, I often say I feel like a fraudulent patient now.

[louise1969Participant]

Aww bless you Jane, you have the right attitude and it is a real comfort to know that you have come so far from your fears to acceptance, really wish you all the best going forward xx

[louise1969Participant]

Hi everyone, just back from having my bladder and kidney scans done, the sonographer said all was ok and that the results will be back to my doctor in a week, I am pleased I really am because at least if I do have myeloma it does not look like it has caused problems with the kidneys, I will still worry until I speak to my dr cos last time I was told all was ok, then it turned out that I had severe liver seotosis (fatty liver) I’m sure if they saw kidney damage they would not say all was ok would they? I still need other tests because obviously I have the high inflammation markers and other issues, but I will keep you all updated, thank you all for your support, you are amazing xx

[kh0305Moderator]

Hi Louise,
Sounds like good news re the kidneys. They wouldn’t have told you all was ok if it wasn’t. Hope all the other tests go smoothly and you get to the bottom of it soon so you can move forward and put your mind at ease. Stay positive xx

[tony642Moderator]

Hi Louise,

They say that no news is good news, so if they haven`t found anything definite, then there’s a good chance that there is nothing serious there to find! You just have to keep at it and wait for the results and in the meantime try and put it out of your head, although I know that this is easier said than done.

Keep your chin up and stay strong.

Regards, Tony

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