[sara82Participant]

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

[sara82Participant]

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 CBCs are normal.

I saw a neurologist for my burning foot and he doesn’t think it’s neurological – he thinks I should have a foot x-ray and that it could perhaps be a hairline fracture.

With non-secretory myeloma (which I know is extremely rare), can one have it and have normal CBCs? My rheumatologist doesn’t think my previous vitamin d insufficiency explains my ongoing bone pain, and says it’s probably muscle, but I feel it’s bone pain and know rheumatism intimately from years of having it. I’m negative for Fibro, Lupus, Autoimmune, Cryo and RA. I have new areas of pain developing, along my shin bone and still in my ribs, hips, shoulder blades and back, but maybe the body takes time to adjust to a previous deficiency?

Anyway, I’m overwhelmingly reassured. Thanks for putting up with all my questions – I sincerely wish all of you here the very best of luck and good health. The last month of waiting has really opened my eyes to what a mere fraction of this journey must be like. Wishing you all the best.

[sara82Participant]

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…

[sara82Participant]

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 have pain. He doesn’t think a full body skeletal survey or scans are necessary, as all my blood work so far is normal and there are no indicators, except for my worry over these pains I’m having.

I hope the MRI and free light chain test will all be clear, but either way, I think I’ll have to see a neurologist for the burning pain in my foot and the tingling. I also get a burning sensation on my skin in places – that can’t be normal?

All the best to you

Sara

• This reply was modified 10 years, 4 months ago by  sara82.

[sara82Participant]

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 no idea what’s going on, but hoping it’s nothing related to myeloma or MGUS. I’m seeing a hematologist/oncologist about it tomorrow. He may think I’m crazy, but I want to rule it out (hopefully).

 

[sara82Participant]

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 fibula lower down.

I myself did the horrendous Interferon and Ribavirin for 11 months and failed (genotype 1a here from a blood transfusion at birth). I want to get rid of the disease when the new treatment becomes available to people with early liver disease (which thankfully is my case), especially because of links to other illnesses like myeloma and lymphoma.

[sara82Participant]

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.

[sara82Participant]

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 negative.

I have yet to have a UPEP done (but am going to do so with referal to a hem/onc) along with the correct imaging of the areas of dull pain I’m having. I had a tech99 bone scan done which was largely normal, but I know this is not advised imaging for MM.

Results so far:

My SPEP is normal and says “no myeloma band detected” which I’m of course very relieved about. My rheumatologist didn’t order a UPEP though, but agreed to refer me to a hematologist for this and the remainder of tests to rule multiple myeloma out. I also didn’t see any indication that an Immunofixation was ordered, but perhaps this wasn’t necessary it no M spike was seen? All my other blood work with the rheumy came back normal, so no rheumatoid arthritis or autoimmune to explain these pains I’m having.

One thing that was abnormal in the SPEP was Beta, which was low (it was 0.54, range 0.74 – 1.06). Any idea what this means? I googled and all I found was poor nutrition! That’s definitely not the case with me.

Something else that has concerned me is that independent blood work that I had done a month ago in April with an unrelated doctor, for my annual Hep C follow up, showed that under Bone Profile, my Globulin was marked as elevated (38 g/L). I read that this can be elevated in both liver disease and myeloma, so this coincidence slightly worried me. I looked back through past lab work for HCV and never had high Globulin before. Should I share this with the hematologist?

At any rate, I’ll be seeing him soon for the remainder of tests (UPEP etc) and for the correct imaging of the areas where I have dull pain (now daily, but still intermittent – ribs, front and back, back, spine and shoulder blades, and also iliac hip bone and ankle bone).

The tech99 Bone Scan came back clear, except for two hot spots of increased tracer uptake in my two toes, which the rheumatologist wasn’t worried about investigating further. I’ll ask for the UPEP and free lite chain assay to rule non-secretory myeloma and scans of where I have pain. Am I missing anything else? Thanks to all of you for putting up with my questions.

[sara82Participant]

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 concern seriously (I’d rather know and deal with a problem than not know and sit worrying) – I told him I had Hep C all my life (32 years) and that I was having these pains, and also neuropathtic type pains (burning sensations  on my skin, and painful burning in my right foot etc) and he suggested a bone scan and talked about testing for cryoglobulin and protein etc – so I then voiced my myeloma/MGUS concern.

I’ll report back once I get all the results next week. He ordered a Technium bone scan, which is apparently not ideally for myeloma workups (that’s puzzled me) and a SPEP with some other blood work. No UPEP though. I’ll have to discuss it all further with him when I see him. If I’m going to rule this out, I want to do it completely.

Thanks for your support. I wish all of you who are struggling with this illness a successful treatment and good health.

[sara82Participant]

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, or was it only specialized tests that confirmed it i.e. SPEP?

 

[sara82Participant]

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 myeloma and can be from bone marrow infiltration. Is this actually true?

Has anyone experience intermittent pain for some time before diagnosis?

Thanks again

[sara82Participant]

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.

[sara82Participant]

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 skype) and my ribs are in agony. I will be seeing a rheumatologist soon.

I’ve had blood tests recently (as I do every year for HCV) and also urine tests, as I have kidney stones:

– Would protein in the urine show up even without a test being done for it?
Thanks again. I will follow up here with any developments, either way.

[Author]

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