[docmikeParticipant]

Dear Sara,
Yes, the serum free light chain assay( which is expensive ) is perhaps the best test to exclude MM but it could well be abnormal with chronic hepc but not of a similiar pattern to mm when either the Kappa or lambda chain will be markedly raised but not both (gives an abnormal ratio).(btw I assume you stil are awaiting the availablity of a non pegifn /oral regime to clear your hep c?? )
Mike(michaelgashton@aol.com)

[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.

[angieevangelouParticipant]

Hi
Im 46 and my biggest problem has always been Rib Pain Front and Back…this eventually led to tests which diagnosed Multiple Sclerosis and MGUS…no medic seems
to really know which disease causes my Rib Pain which is ongoing but controlled with pain relief… MRI’S/Lumbar puncture and bloods diagnosed the MS.

Angelina

[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).

 

[angieevangelouParticipant]

Hi Sara
My rib pain was constant all around my rib cage like a tight burning feeling with occasional stabbing pains in different areas…since my MS diagnosis i have learned from MS sites on internet that Rib Pain is often a symptom…its called the MS hug ! However all the symptoms of MS and Myeloma are very similar so its difficult for me to know whats causing my symptoms and almost impossible for me to keep track of worsening symptoms as regarding MGUS/MYELOMA as the MS causes me to feel tired/unwell and with various neuropathic pains/symptoms all the time.
Good Luck with your heamatology appointment.
Angelina.

[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.

[angieevangelouParticipant]

All the burning pains and tingling etc are symptoms of MS…your MRI results may shed some light on your symptoms….my thoracic spine MRI was the thing that prompted other tests for MS…Hope it’s clear and the Light Chain Test is too as that should help put your mind at rest regarding MM … 🙂

[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]

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.

[docmikeParticipant]

Dear Sara,
I am glad things are looking good from the point of excluding a plasma cell disorder .When i joined a hep c patients group they taught me about the many manifestations/presentations of chronic hcv hint hint!!
You should now be candidate for treatment ;contact the Hep c trust they will know and guide you
Best wishes
Mike

[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

[Author]

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