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
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
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
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
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
Tony you are a darling, thank you so much for taking the time to reply to me, it means a lot, i kvow you are right in all that you say, I need to stop worrying until I know what it is, yes that is hard to do especially with anxiety but I will try, most of the time I am fine and then it suddenly hits me that I could be dealing with this. only I can stop these thoughts and I will try, I am 53 and a strong independent person normally who copes with anythnig, I need to stay in tvat frame of mind, can I just ask if beta 1 and 2 were mentioned in your diagnosis tony? Honestly I’m happy with everything apart from those two little antibodies or whatever they are lol, I will definitely keep you posted once scans are done and see where we go from there, thank you so much for your support, it means a lot, also I am in awe of you for the way you cope , to go through all you do and still come and reassure others is truly amazing, for you and all of the people on here, it’s heart warming xx
Hello everyone, I feel awful coming in here again , please don’t get cross with me, I suffer with health anxiety which is not helping my situation… I have my kidney and bladder ultra scans booked for 9th nov (loads of microscopic blood and high acr level , the thing is I am really struggling today, I’m so scared because I kvow something is wrong inside, and I just can’t get my blood results out of my head, I was happy that it said no paraprotein detected and happy that it said normal electrophoresis, but I can’t get the raised beta 1. And 2 out of my mind, it is bad to have these apparently and they mean for a poorer prognosis, also others have had heavy and light chains tested , but I’m not sure I have, I just don’t understand what it all means, are my high lga the chain ? Sorry to sound thick but never even heard of myeloma until a few weeks ago, I do have severe fatty liver disease and I’m type 2 diebetic, I just wondered if those beta 1 and 2 would rise because of that, also my esr at last count was 37 and crp was 14.5 , I know you are busy people and o feel ashamed petering you because you are all dealing with your own diagnosis etc, but I am just so desperate to find anythnig at all in my favour , but I just keep hitting a brick wall, I was diagnosed with a rare but severe allergy in April wheat dependant exercise induced anaphylaxis and wondered if that has caused a problem also womb cancer 4 years ago , I honestly just can’t not cope with this worry, I’m so sorry x
Thank you Matt, you are right, I need to just be patient and definitely need to stop googling, the funny thing is I am part of the Macmillan endometrial cancer forum due to having cancer 4 years ago, I have told many a new comer to please keep away from dr Google and it’s out dated advice etc, I send them to the correct sites for cancer and nhs etc, now I’m doing exactly the same thing, time to take my own advice I think so thank you for reminding me take care xx
Thank you so much for your reply tony, you are of course right, I need to stop looking and scaring myself , especially as it may be nothnig, your post was very positive and it sounds like you are doing really well on your journey so that is great to hear, I have a lot of health issues including being diagnosed with a rare but serious allergy wheat dependant exercise induced anaphylaxis back in April and it has made me very anxious regarding my health, thank you for your reply, it means a lot xx
Hi kh thank you so much for such a detailed and positive post, the story of your dads journey is amazing and I am so pleased that he is living a good life, stories like this really do show the positive side so thank you, also thank you for such detailed info, phew I didn’t realise it was so involved, I feel even more scared now, I will cling to the hope that no paraprotein and the fact I’m not anaemia are good signs but will try to put the bits like beta 1 and 2 out of my mind along with the lga highs , best of luck for your dad going forward my lovely xx
Thank you so much for your reply mariposa, I agree that having no paraprotein is a good thing, however Google which I know I should not have visited says that myeloma can sometimes not produce paraprotein, I also read that having both raised beta 1 and 2 fractions often means malignancy and the raised lga is worse prognosis than raised lgg, this is why I have got myself in a complete state of anxiety, I should never goggle, but I always do, I am so sorry that you have been diagnosed with mgus but I am glad it is that and not myeloma and I hope it always stays as a watch and wait for you, oh bless you I am sorry to hear about your borderline Parkinson’s diagnosis, it’s so hard to have all these health worries, I have lots of issues as well so I totally understand how deflating it can make you feel, I really wish you well going forward and thank you again for relying, please take care xx
