[alpenatorParticipant]

What a great forum this is.
I have been very encouraged by the responses that I have received and thank everyone.
Just to add to my initial Post:

I am 77 so it is unlikely that I will go down the SCT route, I don't have a treatment plan yet.

Poor vision was the thing that led to my diagnosis after eye specialist spotted bleeds around both optic nerves.(hurrah for my optician, who I see nest week for some new specs, I hope)

I had a replacement knee last December and lost a lot of blood (4 units transfusion) and since then my blood count has been low, is this related I wonder. After the knee op I suffered severe back pains which all prescribed pain killers failed to touch, I now know that my spine has been damaged by the MM and the pain continues.

I wonder if the knee op was the trigger for the MM?

[dickbParticipant]

Not sure but believe amneamia is a side effect of MM. Your MM could have started a while back , I believe mine began a couple of years ago but, there are so many symptons that are stand alone that it would not necessarily be diagnosed, especially someone in your age group. eg, osteoporosis, elderly women get it, kidney problems – affect the elderly. Aneamia, a known illness for the elderly, reduced antibodies, affects the elderly. Hope I haven't made you feel old but that's the trouble with MM, it hides behind other better known and accepted health problems. It's only when they look at the whole and delve a bit deeper do they start to find a possible link.

[HelenParticipant]

Dear Anthony
I'm Helen nice to meet you. In a former life before research nursing and mm I was an orthopaedic ward sister and as Richard rightly says, it's easy to try and pick out what was going on and the prequel to mm.
Re the knee replacements …..I hope this isn't too tedious 🙂
You should ask what your preop blood picture was like, I suspect you would be normal/ low normal for age/ gender/ known illness. Otherwise you would not have reached theatre on my watch anyway! 🙂 Knee replacement carries a high haemorrhage risk and so this is usually scrutinised well.
Kidney function is also assessed well pre-op so I I suspect this would be normal.
X-ray of the chest and femurs also done preop would show active mm lesions, but not diffuse mm cells. MRI scan will confirm active lesions but even they fail on diffuse cells which can reach very high levels before they show up on films.
During surgery any soft bone would be obvious though its rare to find lesions in knees.
Post op the body is under great stress to recover from even minor surgery, major surgery is often an event trigger of some conditions which are just sitting there quietly brewing! Mm can be very indolent for many years then suddenly triggers its self to become very wrong, very quickly.
You could ask these questions and get the results from your GP, you are entitled to them under the freedom of information act.
All in all if everything in the systems above, pre op, was grossly normal I suspect it was sitting there silently waiting, only showing its self in areas not likely to be inspected as you had no symptoms. In fact you say your counts have been low since which suggests that this was not the case pre op. now coupled with the eye problems you have started to present some of the vague galaxy of symptoms associated with mm.
I've gone on a bit ….. I'll stop. 😀
Love Helen

[VickiParticipant]

Helen,

That's never tedious:-) I often wonder whether its better to have medical knowledge or not….you now what's going on, but is that good or bad? Hope you are doing ok….

Hi Anthony, I am always wondering how my partner Colin's myeloma started, was it before he had shingles or after? He had shingles in January 2011 and was diagnosed with mm October 2011 like you after severe back pain, not tougher by pain killers. Trouble with me is that I am always looking for a solution, and get frustrated as I like to make things better, and can't in this case. Well except for keeping the house going, and doing good food and being good company (well I think so anyway!). You're right Anthony, a great forum and lots of support. Keep your chin up and keep going 🙂

Vicki and Colin x

[mhnevillParticipant]

Hi Anthony

I'm interested in your question and Helen's reply. I often wonder if my Myeloma is connected to the fact I had to have a double hip revision, including a bone graft, following infection in a previously infected hip which my Consultant denied for over 18 months!

But in the end, I decide, I can never really know! Maybe it was the hair dye! Vain woman that I am!

Do hope things go well for you. I haven't gone down the SCT route. I had CDT drug treatment for six cycles starting 18 months after treatment. I am now in remission, but still lots of back pain.

You will find lots of help here if you ask,I have.

All best wishes to you.

Mavis

[HelenParticipant]

Dear Mavis
Never vain, pragmatic I say, and hair dye cannot be to blame otherwise more women than men would have mm……….. unless they are all lying to us…….:-D
Love Helen

[PerkymiteParticipant]

I did not pick up this interesting thread before. Now I am sitting here having a Dex morning it just seemed to jump out at me.

When I was diagnosed the Senior Consultants words were, "We believe, looking at your medical history, that you have already had MM for 2 years, maybe more." That was in July 2009. And, with hindsight, even I can join the dots together, like a DVD with no apparent cause.

I believe I should have been diagnosed earlier, possibly about 2008 when the DVD appeared at least. Indeed I noticed my own Doctor, a good friend, flush up when it was discussed. I do not believe an earlier diagnosis would have extended my life, I probably would still have had the neck operation, but not under such dramatic conditions, but there you go that is life's rich pattern as they say.

I have never looked for a specific cause for MM, something to blame or I can beat myself up for. I have led a good/bad(;-) ) life and know I have done many things I should not have done, smoking for 20 years for one, but I do not regret anyone of them. Indeed I regretted giving up my favourite cigars.:-(

I have believed for many years that over the last 100 years human beings have got too clever by half and as a race we have poured to many Chemicals/nuclear emissions/ CO2 etc?etc? and the like into the atmosphere, food etc? etc?, not just in England but all over the world. And, the human race is now reaping the downside, look at the projected statistics for Cancer recently released.

I am NOT saying as a race we should not have done these things what I am saying is that when we were busy doing them we did not realise the implications or if we did they were brushed under the carpet at the time, possibly in the name of progress who knows, or just because it was necessary to feed and keep warm the ever growing world population.

And, there my friends, is possibly the nub of the problem; an ever expanding world population, we are breeding like rabbits (sorry rabbits) and it has got to stop? A heading for another Dex morning I think. 😎

Kindest regards ? vasbyte

David

[Author]

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