Hi @traumamama28,
Welcome to the forum and thank you for posting and getting things off your chest. It must be an anxious time for you given your family history. Do let us know how you get on with the MRI scan. I was diagnosed about 18 months ago with routine rheumatology bloods. My father had and died from myeloma, so the news came as a great shock to me. I have igM monoclonal gammopathy of unknown significance (MGUS), which is currently considered low risk. A consultant told me that myeloma is not genetic. It is medical “dogma” that monoclonal gammopathy of unknown significance (MGUS) is asymptomatic, but if you read around you will find that there is not complete consensus on this. If you read Blood Cancer UK booklet on monoclonal gammopathy of unknown significance (MGUS) page 4 you will find a reference to peripheral neuropathy. So if you are worried about the tingling, ask to be referred to neurology at your next haematology appointment .
In the meantime you might find it helpful to get a copy of the Blood Cancer UK booklet. Myeloma UK has a monoclonal gammopathy of unknown significance (MGUS) diary and booklet you can download. There is also downloadable info on Macmillan Cancer Support website.
Hi @helenfwallace ,
Yes absolutely! Those were my thoughts exactly. They learn more and more so hopefully we have helped that along a little Hope you’re doing ok at the moment? I’m coming up to the next blood tests at the end of the month so a little anxiety building as usual.
Take care,
Hugs, Alex
Hi, for those monoclonal gammopathy of unknown significance (MGUS) sufferers with symptoms, Myeloma UK have a downloadable leaflet om MGCS Monoclonal gammopathy of clinical significance.
Thanks to those who replied recently and sharing your experiences. I’ve had a very busy week at work since attending my MRI on Sunday morning, and waiting to hear from my consultant. Have spent some time this week ordering supplements, making some changes to my diet, and forcing myself back to the gym after a few months off. Hopefully the fitter I feel, the less stressed I will be about these aches, pains, and fatigue…
Hope to hear from you all with any updates to your monitoring of monoclonal gammopathy of unknown significance (MGUS) / MGCS. The MGCS leaflet makes much more sense to me with all these symptoms ongoing. I will be mentioning this to my consultant when I speak to her next
Hi I was diagnosed 12 months ago and like yourself had a panic of what will come, in time I’ve settled down about things and try to sit it to the back of my mind. However there also is always something that will spark off an overthinking moment. But I guess if we reach out to each other and share experiences it all helps with the journey x
Hi every.one! Wishing a nice evening to you all.
I’ve been reading posts on and off and trying to keep up with everyone.
Helen, my mind is being completely blank this evening and I am not able to find the leaflet for MGCS on Myeloma UK. If you have time, may you tell me where to find exactly?
Last week I had the Hematologist meeting. Monoclonal gammopathy is stable. This year and last year, however the ESR is very elevated. Not sure what’s causing inflammation. And PTH, parathyroid hormone is still elevated even if D level are now in normal limits.
I think I had previously mentioned having to go to immunodermatology specialist. That was a waste of time because I didn’t have active breakouts of blisters at the time. Of course not, it was 2 months to get the appointment. But that’s not so unusual, to be sick and by the time you go to the doctor you’re feeling super well!
The black and purple purpura on the arms and now some weird red splotches on my face are relatively new. So Hematologist has ordered some more blood tests. If anyone else with monoclonal gammopathy of unknown significance (MGUS) are having skin issues, have you discovered what they are? Related to the paraprotien?
Hi @elipt66 this is not a leaflet but here are links that might be helpful MGUS – monoclonal gammopathy of undetermined significance | Blood Cancer UK MGUS - Myeloma UK
Myeloma UK’s information line is 0800 980 3332
Also the Blood Cancer UK support line is there for you on 0808 2080 888
Typical that your blisters had disappeared by the time that you got to your appointment, I have found that with something I had wrong with me recently.
Yes, take care, keep posting and really be kind and look after yourself
Hi Elizabeth,
I was wondering how you were getting on. Here is the link.
It is good that you are having your skin issues sorted out, whether or not they are monoclonal gammopathy of unknown significance (MGUS) related. Are you still seeing your endocrinologist about your PTH/Vitamin D. I got a referral, but there is a very long waiting list and am now wondering whether to bite the bullet and go private.
Thanks Erica. Yes, it can happen to magically feel perfect on the day to visit the specialist. Not complaining, it’s just one of those things.
Elizabeth
Thanks Helen! That’s exactly what I was looking for.
I will have the yearly visit with my endocrinologist the beginning of the year, unless my home doctor says to go sooner. First, the hematologist prescribed cryoglobulinemia, and ANCA blood tests, and another urinalysis. For the time being I pay private for the hematologist and endocrinologist.
When first diagnosed I had an appointment with our nearest oncologic hospital. But… the doctor was not a good fit for me that day. When I asked why my calcium was so low (this was a few years ago now), she asked me if I drink milk. Oh my goodness, my internal sarcasm buzzer was screaming to say something but I was polite. Then found a doctor private and more in our vicinity.
Let us know what you decide for endocrinology. I can’t remember if you’re still low on Vitamin D? Let me know. I can look at my dosage amount. I have to take that every 15 days.
My Vitamin D levels are now in the satisfactory range but havent changed over the last three months despite taking Vitamin D supplements. PTH borderline high, but GP signed that off as ok.
Hi I have monoclonal gammopathy of unknown significance (MGUS) and a rash started a similar time to when I was diagnosed, over 12 months ago, it’s progressively gone from lower limb to now all over up to my arms. I had a punch biopsy and currently awaiting the results. It’s small red raised bumps all over and larger patches on legs, I do worry incase it’s connected to blood issues but GP and dermatologist don’t seem to want to listen. But I have concerns it’s related to the paraprotein, or that monoclonal gammopathy of unknown significance (MGUS) can cause T cell cutaneous lymphoma? Has anyone experienced this.
Thanks and well wishes to everyone x
Hi @LC23 I expect it must be so frustrating and worrying when you do not feel listened to and all you can see is your body.
Please do let us know how your biopsy results go.
Perhaps you might want to consider a second opinion either via the NHS or if it were possible privately.
I hope others can share their experiences.
Look after yourself and be kind to yourself and keep posting
I understand your anxiety over your symptoms, and the feeling of not being listened to by doctors. My experience with skin lesions is that sometimes it is difficult to tell what something is without doing a biopsy. I once had a basal cell carcinoma on my face which I thought was a varruca and years later I had something similar on my hand which was entirely benign (still had it removed though). The biopsy should give the answer. Do you have long to wait for the results? Whilst waiting try and keep yourself busy.
Best wishes
Helen
