Hi,I visited my Gp becauseI have funny episodes of joint and tendon pain, this goes on for a few weeks then gets better for a few weeks. The GPtested for inflammatory markers and we decided I should start on a gout medication. Then he rang to say the Hospital rang to say I was being referred to Haematology as the test showed there was monoclonal proteins, he mentioned paraproteins and monoclonal gammothapy. It wasn’t until I googled it I realised that it could be potentially quite serious. I’m awaiting my appointment to come through, just wondered what is likely to happen at my appointment. I wished that no one ever told me I had this but I suppose it could be positive in that I will have regular checks.Also is there anything I should ask?
Hi@Husseyhemlock,welcome to the forum,thats good you have been tested for inflammation and hopefully the treatment will help .
I remember when I was told I had “potentially” monoclonal gammopathy and was advised from the lab to have all sorts of tests,it put me in a right dither.
Your ? Is “anything you should ask”.
Before your appointment rather than google all sorts of info look on BCUK website there is a leaflet on MGUS ,also Myeloma UK have a very good leaflet on MGUS you can download also an MGUS diary.Myeloma UK support line is 0800 980 3332.With the support of these 2 it helped my understanding .
The important ? Is for you to ask the name of your paraprotein there are different ones and you will read this in the above info.Mine is IgG kappa.I am on" watch and wait" every 12 weeks like you say you wished you hadnt known but it is a positive because now you can be monitored and anything untoward can be acted on .
In the meantime try to find a way to relax ,eat well ,lots of sleep,exercise BCUK website gives useful ways to look after yourself.
All the best and keep posting .
Hi @Hussyhemlock a great big welcome to our forum and I cannot help you medically but I can feel the anxiety in your post.
Perhaps Dr Google is not the best thing.
@Bannanacake has given you a brilliant response which I will not duplicate.
This time does give you time to write down all your fears, thoughts, feelings, questions, practicalities, your symptoms, medical history, medications, allergies, family history so you feel prepared when you go to your appointment.
Take notes and don’t be afraid to ask for clarifications medical people speak another language.
Now look after yourself and be kind to yourself and have some fun.
Please let us know how you get on.
Hi @Hussyhemlock, thank you for reaching out to the forum. You ask some great questions, and I see that you’ve already had some very useful suggestions on how to manage these from our forum members. If you’d like to speak to one of our nurses or support officers, then don’t hesitate to give us a ring on 0808 2080 888 or drop us an email at firstname.lastname@example.org. We’re open from 10am tomorrow if that’s helpful for you. Take care, Kate
Thank you so much for your informative reply, lovely to know I have somewhere to come when I have questions/concerns.
Hi @Hussyhemlock I have been thinking of you, how are you doing?
Look after yourself
Hi Erica, still awaiting my haematology appointment, will be glad to have it and find out how we move forward. So pleased I joined this forum and surprised how knowledgable you all are. I’m feeling much more positive.
Hi @Hussyhemlock I can identify with your experience as I kept getting told that I had gout and back pain until somebody ran a scan and found out that I had high levels of paraprotein and therefore had Myeloma. It’s a bewildering time especially if like me you had never heard of any of this before. I remember that I really didn’t know what sorts of questions to ask and just let the diagnosis wash over me. I hope that you are able to get some clear information from your medical team and the support network around you that you need should it be bad news. And of course we’re always here to listen if needed. Let us know how things go.
Hi Erica, I have my haematology appointment on the 20th of September, I have to have blood tests before I go so that they have the results for my first visit. I’m actually quite pleased to have a date, I really would like to know about my particular type. Thanks to the forum I know what I need to ask. I had a kidney removed 30, years ago so am a little concerned that I could have problems with my remaining kidney. I’m so pleased to be on here as whatever news I get, I feel that I will have support. I’m hoping I get put on watch and wait that’s the best case scenario ( best case would be that they tell me it’s all been a mistake ) will keep everyone updated x
Yes a date in the diary and the way forward does feel good @hussyhemlock.
Please do let us know how you get on and I find I really have to inform my consultant about my other conditions like your having a kidney removed 30 yrs ago.
Yes, I feel a very lucky girl to be on watch and wait.
Yes, please do let us know how you get on and take lots of care
Hi @Hussyhemlock I have been thinking about you, how are you doing after your 20th Sept appointment?
Look after yourself
Hi, thank you for asking, I saw the haematologist, am on a watch and wait, only need to have a blood test every 6, months unless I have any funny symptoms, all blood tests are going to the haematologist, so I feel much better. I completely forgot to ask about the type but will see her in 6, months so will ask then. It was a good appointment, I had a thorough examination and it was quite upbeat. It’s nice to know I have access to someone if I need it. Feeling much better about everything. This is such a supportive group I am so glad I came to it, keep well x
That is really positive @Hussyhemlock.
I have been on watch and wait with either 3 or 6 monthly blood tests and appointments either via the haematologist or now my GP for 18 yrs. I am a very lucky girl, long may it continue.
Yes, I find this group so supportive too.
Look after yourself, enjoy life and have some adventures.