Not too sure about my diagnosis, I have no lytic lesions on my CT PET scans, never had any bone pain, both light chains for kappa and Lambda are high. Lambda was substantially more high than kappa. However I was diagnosed with GFR of 10. Calcium is normal, I grew an abscess on my chest wall after treatment, initially they said Staph infection now TB infection (from lab). With TB meds albumin has gone back to normal, can eat and drink normally, I am concerned there may have been a misdiagnosis, could TB have caused my kidney’s to dysfunction. However medical team still think I have myeloma. Not sure what to do.
Hi @Atty and welcome echo the forum. It must be a really worrying time for you with all off the uncertainty and we all know how hard the waiting is. I wish I could answer all off your questions but only your team can help with that. When is your next appointment with your team? Have you expressed your concerns to them? If you need to talk it through the support line is just a phone call away
Hi @Atty I also welcome you to to our forum.
I am not medically trained and you have certainly confused me with all your medical terminology.
Your questions are definitely for your medical team, I have found writing them down with all my fears, thoughts, feelings, practicalities, medical history, medications etc helps me. A consultation is a 2 way process so I have learnt to ensure I understand the answers and ask those follow up questions.
If you still do not feel satisfied there is always the option of a 2nd opinion.
It must be so difficult being diagnosed in Covid times with all this confusion as well. If you feel you would like to talk to someone the support line details are above.
Take care and please let us know how you get on.
I was diagnosed with myeloma without having classic symptoms. The definitive test is the bone marrow biopsy, if this found myeloma plasma cells, then there is no alternative diagnosis. Most people with myeloma also produce paraproteins in their blood, although 1% have ‘non secretory Myeloma’ where myeloma can’t be detected in the blood.
If you have not had a bone marrow biopsy, I would ask for one to be done (even though it’s not a pleasant procedure) .
I was diagnosed with another medical issue at the same time as myeloma ( in my case hypothyroidism, Hashimotos & an encapsulated thyroid glandcancer) The co diagnosis caused confusion in the hospital & certainly in the patient. (I ended up asking for and getting second opinions in a larger regional hospital, where I’m now treated.)
I was diagnosed 3 years ago, my myeloma is inactive now, and I’ve not yet had any issues with my bones, or infections which are the classic symptoms. I’m doing well and getti gbon with a normal life which I had not anticipated being able to do at diagnosis. I hope you also do well, with best wishes.
Hi @Maple great to hear from you and for you showing the value of our forum by supporting each other.
How have Covid times been for you?
Really good advice here. Definitely speak to your haematologist about having a bone marrow biopsy. Not pleasant but very quick. Unfortunately Myeloma is one of these illnesses that is different for everyone. Take care. Joan
Hi @Joan, good to hear from you and how are you doing?
Erica, I am well. Still doing my exercise classes, just finished a Zumba class, and Spanish via Zoom. Going to start tai chi face to face on 17 May so will be great to see people in person. Had both vaccines and as part of a research project checked and have antibodies. Also doing lateral flow tests as now having our grandson for tea after school one day but sadly no hugs yet. Hope you are well and no doubt busy keeping on top of the forum
Hi @Joan, Zoom is really one of the positives to come out of Covid.
I am so impressed that you are still doing your Zumba classes and Spanish via Zoom.
Wow, face to face tai chi sounds wonderful to me.
Yes, sadly no hugs but having your grandson for tea after school one day a week is very special progress.
I am glad that you have produced antibodies after your vaccines. So far I haven’t produced any…yet.
I have decided to make changes to my previous life and to give up some commitments.
I have also decided, after much thought, not to go back to my gym.
My reasoning is that I am enjoying my walking every day. It will mean I do not do my Zumba other dance classes.
I have decided to continue with my Pilates DVD’s instead to going to classes.
My main reasoning is that it means I am not clock watching and dashing to classes.
I can now do my walks and Pilates in my own time and for example fit them in with doing the washing.
I can still go to the gym and classes on a pay as you go basis.
I will miss the people and instructors.
Anyway I can always change my mind later on.
I look forward to hearing how your classes and tai chi goes.
@Joan and @Erica, you both seem so busy. It’s so lovely to hear you are doing things that you enjoy and Erica, I think they are really positive changes. Still doing everything you enjoy just at your pace and when it suits you.
Joan, great news about the antibodies and hugs will soon be here - fingers crossed! X