Hi Michael,

Yes, this is true! Hint taken. It is an unpredictable virus. I’m going to have to wait for the expensive new treatment to become available to someone like me (I don’t have very advanced liver disease – yet!).

I will contact the Hep C trust again and get details as to criteria for treatment etc.

Very best wishes to you and everyone else here

I finally got my results back, and from what I can see I don’t have MGUS or myeloma – everything (including the FLC) is in normal range.

With the blood work done, the only thing I have yet to have is an MRI of my thoracic spine, which is where I still have intermittent pain. The hematologist didn’t think a skeletal survey was needed as all by…[Read more]

I’ve just booked to see a neurologist next week. I had a look online at early MS symptoms and I seem to have a number of those – I had unexplained balance problems and spinning vertigo this last year – doctors thought I had BPPV, but an ENT doctor ruled this out. We’ll see. I’ll come back here with results…

Thanks for sharing that. It must be tough having to cope with MS and also MGUS and its inherent worries. I wish you the best of health!

My pains are intermittent and very localized. I saw the hematologist today and he ordered a free light chain assay and is sending me for an MRI of the thoracic spine and shoulder blades, as that’s also where I…[Read more]

Hi Angelina,

A lot of people I’ve read about with MGUS have complained of having symptoms, despite what’s said about it being asymptomatic, including bone and rib pain.

Can you describe the rib pain you had? Was it intermittent, constant? Was it sharp or dull; was it widespread over your ribs or localized?

I’m also having neurological issues so…[Read more]

Hi Mike,

Thanks. I hope the hemotologist I’ve been referred to takes me seriously and does the remainder of necessary tests and imaging so I either know what’s going on or can have peace of mind and rule it out. My bone pains are “spreading” to new locations. My lower right leg hurts from time to time right on the long bone and also on the…[Read more]

p.s. does everyone with light chain myeloma have impaired kidneys? – because my creatinine was normal. I assume this is what the UPEP would look for.

Dear Mike,

Thanks for sharing that – I’m sorry to hear about your HCV and SM. It’s my lifelong history of Hep C (32 years of chrnoc virus) that promoted me to investigate for MM with these odd pains. I just received the first batch of results back to rule out MM, which were all negative thankfully, and I was tested for Cryo which was also…[Read more]

Thank you Mavis.

Sometimes I feel crazy for even worrying about this disease – but when I get these pains in my ribs, and in my back, shoulder blades and spine (yesterday they were quite painful, deep and unpleasant), and also in other places like my hip and ankle bone – my worry increases again.

I’m at least “glad” this rheumatologist took my…[Read more]

Thanks for your reply – I’m sorry to hear that. I can’t say I find it encouraging… I asked my rheumatologist if it could be Costochondritis and he said unlikely, as that’s usually just the chest and front ribs. He also didn’t think it sounded arthritic.

Did you have any abnormalities in routine blood work prior or at the time of your diagnosis,…[Read more]

Hello,

I finally discussed my symptoms with a rheumatologist, and he agreed that myeloma is worth screening for, given my medical history, so he ordered a SPEP along with other tests, and is sending me for a bone scan.

He said intermittent pain is a more encouraging sign, though I’ve read that barring fracture, intermittent pain can accompany…[Read more]

Oops, that last question wasn’t clear, sorry:

I meant could protein show up in a simple urine test even when specific tests to look for them haven’t been ordered?

Thanks again.

Thank you all for taking the time to reply.

I sometimes feel foolish for thinking about MGUS or myeloma – but with the underlying Hep C, and the onset of now chronic rib and upper back pain about a year ago, albeit dull and intermittent, it’s been on my mind. Any sustained pressure on my ribs (like leaning over the couch to say hi to someone on…[Read more]