[eveParticipant]

Hi Pilgrim
Well lets start as we mean to go on,plasma cells,every person has up to 5% in there bone marrow,this is normal,I wish that my husband had that.
Who needs a left arm,any person that does not have the use of one.
I hope you are breaking open the champagne as I type,or may I suggest walking a mile in some ones shoes who has a disability
It tends to put every thing in perspective

I wish you well on your pilgrimage and I hope you find what you are looking for Pilgrim.
This is from a carer who has a grandson who does not have use of any arms or legs,and is a carer to a husband who has stage 3 Myeloma.

[tomParticipant]

Hi Graham

Well its a start and getting on with the NHS for you is another first, good luck with your MRI and all the best for April (wont be long now)

Tom "Onwards and Upwards"

[PilgrimParticipant]

My symptoms just bear no relation to anyone else's, and to make matters worse I've got to stop eating again. It's not the first time, and it's not that I don't like eating, but it only makes matters far worse.That always appears to get misinterpreted as attention seeking, but I just want some relief, if only for a while. My current record is 12 days without food and it's remarkable how long you can last, but I'm not doing it for fun.

When my abdomen is bad certainly I get backache, but it's barely noticeable when it feels as if my abdomen has someone using a cheese grater on it from the inside. I'm not sure if the spinal investigation is just another blind alley.

I suspect that they're going to have to do the diagnostics on me from a hospital bed, which is hardly what I'm wanting. I've no chance of lasting until April.

Presumably if I have MGUS, then I don't have myeloma, which is about the only good news I have at the moment.

Getting to the MRI scan on the other side of town on a Sunday will be fun enough, but that will be the end of my long distance travels.

[tomParticipant]

Hi Graham

Sometimes its better to be admitted to hospital then they can do the tests Faster than as on outpatiant 😀 and it will save all that travling back and forth, good luck with it all and hope it is soon resolved

Tom "Onwards and upwards"

[mhnevillParticipant]

Hi Graham

Glad you feel you are being treated like a human being at last by NHS. All the best for your tests however and whenever they happen. Must admit, waiting isn't fun, but then I remind myself I don't want to wish my life away.

Your have probably read all about MGUS. It isn't MM, but there is a belief about now that we will all have passed through a MGUS stage, probaly unknown and undiagnosed. On the sites are various progression rations for each year.

All best wishes.

Mavis

[PilgrimParticipant]

Excuse my flippancy eve but, though I don't believe I have myeloma,, I suspect that I do have something with a with similarly unpleasant prospects, not that life isn't pretty dismal now.

The symptoms of polymytosis are remarkably similar to what I have, moreso because they are unusual to appear together. It's been made worse for me because I can be close to collapse at one moment and then recovered shortly afterwards. At the hospital they called it 'throwing a wobbly' but having no explanation as to what was causing it I had no answer. I feel as if I learn to walk afresh each day and, though I can walk without a stick, I need one if ever I need to bend my back.

I'm probably further away from a diagnosis than ever, but at least knowing that there is a condition that explains what is happening to me is some comfort.

[PilgrimParticipant]

Oops – I meant polymyositis.

[PilgrimParticipant]

It's a blessing that my GP has stuck with me through all this as I'm not sure that many others would and when I saw her this morning I made sure to thank her for all she'd done,

Thankfully I have confidence in the Haematology Department at the local hospital and they should be able to confirm or rule out polymyotosis from simple blood tests. Potentially it could arise from a tumour so I have to see what the spinal scan reveals, and I'll avoid making a flippant remark about that. Spinal damage could be down to my back lacking muscular support.

I have bait of a wait.

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