[KarenHParticipant]

Hi, I am sitting at home feeling terrible and have been looking on the Internet for some answers, please can any of you help? I am 46 and for the last 16 months I have been unwell. It started with fatigue and lots of strange sensations. From December I started getting neurological symptoms: balance, blurred vision, weakness in my right leg (now walking with a stick) night sweats, backache, sensory changes. I am under a neurologist and they thought I had ms but tests have not confirmed this. They now think my symptoms may be caused by paraneoplastic syndrome. I am waiting to be admitted for another full MRI, another lumber puncture and a PET scan. Blood tests have shown I have a raised IGA (almost double normal range) they have found a paraprotein with ?MGUS, and a midday urine last week found Bence Jones protein (only 0.03) and my first lumber puncture found some protein. Please can anyone tell me does any of this maybe point to Myeloma?
Many thanks
Karen

[tomParticipant]

Hi Karen

Am Sorry I cant help it would be remiss of me to say yes or no as I am not a Dr, and it would only worry you more sorry, but whatever it is I do hope you are soon sorted with a name and tag to it so as the meds can start.

Hope that soon

Tom "Onwards and Upwards" xx

[EvaParticipant]

Dear Karen,
Have any of your doctors raised the possibility of myeloma? It's often a very difficult illness to diagnose. What might be significant is not just whether the IgA immunoglobulin is raised, but whether the others are suppressed( IgG and IgM). A PET scan is a good idea as it might pick up lesions in your bones if you have any. However, some myeloma patients don't have any lesions. Myeloma is a cancer of the plasma cells in the bone marrow. For this reason, a bone marrow biopsy is a good idea, as if you have a very high level of plasma cells in your marrow then it might mean that they had proliferated. I've got myeloma, and recently when I had a relapse, my bione marrow biopsy showed that I had over 70% of them. I was put on immediate treatment and after a year the level went down to about 5% which was considered reasonable.
Another test which is not that difficult is beta2 microglobulin. That can be measured via a blood test. If your level is outside the normal range you could have myeloma, but it could also be an indicator of inflammation caused by an infection. I suppose the important thing is that you are seen by someone who is really familiar with myeloma and who tests for it. Some of us have had quite a delay with diagnosis.
I would like to reassure you that in the last four years two new treatments for myeloma have been approved in the UK. If you've been reading studies on the internet then please remember that information about prognosis is usually based on older treatments. Some patients will respond to a number of sequential treatments or to a stem cell transplant, and they can have many of their potentials restored for varying periods of time. There are also two more new meds that are likely to be approved in the US soon, and the UK may follow. I know I sound very circumspect with my wording, but myeloma is a very individual illness.
Best of luck,
Eva

[KarenHParticipant]

Hi Tom, thank you for your reply. What will be will be, just need some answers…..as they say better the devil you know!
Thanks for your thoughts, Karen

[KarenHParticipant]

Dear Eva, thank you for your reply. Do you or any other members know anything about Bence Jones proteins? The doctors have mentioned myeloma last week and that's when they checked my urine and it has come back showing Bence Jones protein. They are now speaking to the haematologist at the hospital. Once again thank you for support,
Karen

[VickiParticipant]

Hi Karen,

Like the others I am not medical, but can only share my experience, my partner Colin was diagnosed with myeloma last October 2011, having had few symptoms, following a random blood test. His bloods revealed a paraprotein presence and indeed bence jones free light chains. I believe the light chains are a kind of waste product filtered through the kidneys, due to a malfunction in the blood , something to do with binding of light and heavy chains, going wrong (this is not a medical definition but me trying to understand it myself!).

I would think that the medical team will be able to help you further, as they progress their tests. With Colin they did urine tests, several blood tests and the bone marrow sample which revealed myeloma. As eve mentioned treatments are coming on leaps and bounds and whilst we have been worried about the treatments Colin has received he has worked through it with the help of a great medical team, and is now waiting for stem cell transplant in August.

I hope all goes well for you Karen. Please ask if you have any questions, will try to help

Vicki and Colin 🙂

[PilgrimParticipant]

I know the frustration and anxiety and I have been under investigation since the start of the year though my symptoms began years ago.

Officially I am defined as MGUS which doesn't seem to fit with my symptoms, but myeloma is such a wide ranging illness it's wise to take nothing for granted or become too anxious before anything certain is known.

My experience is that unless your readings are very high they'll look for a trend, which appears to be what they're doing with me. It's frustrating, but I wouldn't want to begin a course of treatment I don't need which could make me feel worse than I do already. That would be the last thing I need.

I have Bence Jones Protein – Iga Lambda sFLC – low paraprotein but sFLC about 130 (I'll post figures some time this week) and a ratio of 0.1 (or maybe 0.01 I must check). I have read cases of people having count of 8,000 but that sounds bad.

You can read a lot of scary stuff online but, in honesty, until they know precisely what you have and how it's affecting you, patience is required.

My symptoms make no sense but at least having found 'out of range' readings it gives them a place to start looking as in your case. My readings are increasing and my next appointment is three months after my last so I'm prepared for a shock. If my readings worsen in line with my symptoms I won't be disappointed.

Hang in there and best of luck.

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