GP not thinking on the same lines as me? - Myeloma UK

Myeloma UK

GP not thinking on the same lines as me?

leatrix
leatrix

I'm wondering if anyone can help and I'm so sorry if I'm coming across as a hypocondriac, but I'm just worried because I think there maybe a possibility I have MM and it's going undiagnosed. Long Message.

Last year, I went to the GP complaining I had shocking shoulder blade, neck and head pain, along with feeling tired all the time, and aching lower back and hips at night time in particular. I thought the GP would say I had arthritis and that I would have a neck/back scan to confirm, but to my surprise, she ordered next day blood tests and when they came back (after 2 weeks wait, because they'd been lost) she called me urgently in the evening time and said I should go on 20mg of Prednisone that night because my blood test markers were high (I think she mentioned CRP and ESR) and she felt I had Polymyalgia Rheumatica and Giant Cell Arteritis. So I took the medication for a couple of weeks and to be fair, I felt much better, and had 2 weeks of relief. I then went for a biopsy, and this came back negative, so I was then weaned off the tablets and left without knowing what to do next.

So spring forward to this year, I still have all the same symptons as before, getting slowly worse and others have joined them, so I called the GP to be told there was a 4 week wait for an appointment and I could see a physio, getting desperate because of the pain, I went, and she saw me for 5 minutes maximum, pushed my back around, which has now caused more pain in my lumbar area and told me that it was because I was probably Perimenopausal. I told her my periods were fine, if not a little heavy lately, but she sent me home with a self-referral letter for physio, even after saying 'having said that your markers were high...mmm...here's the letter'.

I'm now sat here after (doing that thing we should never do...google our symptoms!) and everytime it comes up with Multiple Myeloma. My Dad died in his 60's of cancer that was riddled throughout him with anaemia and think I've not got into my head that I'll be the same. Anyway, long story short, I wondered if there were any private tests I could have (because I've lost total faith in my GP getting to the bottom of any problem I have now...even for arthritis) and what tests I would need to rule this out please?

7 Replies

Sorry to hear of your pain & more importantly your obvious anxiety over this. I have had MM for over 4 years now, took me about 6 months to finally get diagnosed. I was always getting palmed off with various rubbish & put on higher dosed painkillers & told to go home. I was in agony with 6 broken ribs it transpired!! Sorry but unfortunately I am unable to help you here. I just wanted to say, believe in your gut feeling & never accept what you’re told. Get 2nd opinions & more importantly... xrays!! Demand them, don’t be fobbed off. I wish you well, mentally this is not a good journey. Let me know when you know!! Take care x

leatrix
leatrix in reply to Aldo68

Thank you so much for replying, especially as you’ve gone through the experience of feeling you were fobbed off too. Well I decided to go for it and ordered private blood tests, hopefully this will either allow me to be reassured or know what to do next. I never thought about x-rays so will be adding that to the list also; thank you for the heads up there. I’ll keep in touch and can’t thank you enough x

Aldo68
Aldo68 in reply to leatrix

Your more than welcome & I hope that everything turns out the way you want. Take care

Aldo x

You can download the information diagnosis pathway from Myeloma uk.

Take this to your doctor. Talk to Myeloma Uk nurse. They are so helpful and lovely.

leatrix
leatrix in reply to carlyroo

Thank you for the heads up on myeloma information. I certainly will take this to the GP on return of my tests.

Blood tests done, waiting game now x

Well my blood test results are back and they suggest Diabetes along with a disorder of the red blood cell pigment (like Thalassaemia) and my C-Reative Protein Level is 18.3 (should be below 5) so it’s off to the GP to see what’s up! Finally getting somewhere though, just want to know what’s causing my neck and lower spine pain now. Thanks for your support x