Straight out myeloma is obviously a devastating illness and the histories of people I've read here are quite difficult to read.
The thing is that when my GP first mentioned bone cancer I totally disregarded it as I didn't consider my pains were significant enough, but my new found knowledge of all the variations and symptoms has opened my eyes.
I have to admit that if my GP hadn't pointed me in the right direction I don't know what the end result would be. It's not the same every day, and on a good day I can manage quite well. On a bad day I am a total wreck.
Just reading about someone else having a bad reaction to the flu jab was a 'eureka' moment for me and it's easier to understand it all as my immune system being completely out of sorts. I'm not sure if all the aches and pains come from my bones or muscles or organs.
I'll read up some more but I'll leave the specific diagnosis to the hospital as there is so much overlap in the symptoms.
I still wouldn't say that I have symptoms indicative of myeloma and, I'm not even going to dwell on that as a possible outcome, as I'm not sure how I could deal with that on top of everything else. I'll just take reassurance from the fact that I'm on a path to a diagnosis.
On the good side I took my 90 year old Mother on a trip to Matlock Bath last week, which is something,
I've come across a couple of interesting articles
http://asheducationbook.hematologylibrary.org/content/2005/1/340.full
Whatever else I am, I'm not asymptomatic, and this forum thread refers to something that happened to me
http://forum.choosehope.com/viewtopic.php?id=230
My body's a wreck and having been treated as a hypochondriac for so long, it's a mental release to read something which perfectly confirms what happened to me over the flu jab.
It seems that MGUS is the likely precursor to myeloma, and I fit in precisely with the symptoms sufferers mention. I do at least manage some days when I am able to function, but then I have recurring bouts of what is like flu that reduces me to being barely able to drag myself outside.
Reading about the wide variety of related illnesses is quite mind boggling. At least I have found some variants or experiences that are closer to my symptoms. Whether that makes my prognosis better I have no idea, but at least I can be more helpful to the doctors in mentioning all my symptoms and it is some comfort that I'm not making it all up.
Apparently the paraprotein level before Christmas was 5 point something, which is nothing so I believe, but Just sitting down for a long period at the hospital left me a wreck.
They're doing all the checks and bone marrow too. If the tests come back negative I'm left with symptoms and no diagnosis which will be very frustrating, so I'm one of the few who just wants an answer and isn't bothered if it comes back as myeloma.
The doctor is friendly enough and was happy to show me results, which bodes well.
The only thing worse than a diagnosis of myeloma, is having it and not knowing – but I still think the odds are that isn't my problem.
At the end of the process I felt as if I'd won at Monopoly with all the slips I was given, but a nurse took care of them for me, as my brain was gone by then.
The doctor mentioned Amyloidosis and taking a quick look at the symptoms, it does appear to be a much better fit. The most spectacular part of my symptoms is that sitting or lying for a significant time leaves me devoid of balance and staggering like a drunk.It's always worst at the surgery or hospital as they'll never let you go for a walk when you're waiting, It's embarrassing as it looks like attention seeking as it's so extreme.
It's the same family as myeloma.
Having woken up an hour ago, it feels as if an elephant has spent the night tap dancing on my body. I can't imagine how people who have suffered serious bone damage feel as it's awful enough to have to get accustomed to moving again, but at least I know I'll be able to walk later.
The way things have developed I'm not on the best of terms with my Health Authority, which is exactly what happened with my kidney cancer. It's regrettable and unwelcome but unavoidable.
II presume that the haematology appointment is in reality just a blood test.
The result isn't of such significance to me as making the dreaded aches and pains go away.
I've been advised by phone that I have a haematology appointment for this Thursday to go along with my rheumatology appointment on 9th February,
Many thank for the reply Mavis.
Suffice to say that I don't have too much confidence in the local hospital after my kidney cancer experience with them. You don't want to know what happened.
I'll be more than a little annoyed if they've been holding back information.
Being totally objective the course of my illness doesn't follow the classic path of myeloma, but I believe that any cancer tends to be unique to the sufferer.
As my GP mentioned it, and she's ultra cautious normally, I'll presume that I have it until proven otherwise. That way I am already accustomed to the idea.
To be quite honest the banks favoured replacing mature and ethical staff with 'spivs' whose only purpose was to sell 'product'.
When I took a bank to the FOS it was because a bank sold investments to my mother, who like many elderly people is very trusting – big mistake.
The FOS is a very good body ti use in any banking dispute and it creates a lot of work, expense and trouble for a bank. It doesn't cost you anything to use but the bank has to pay a fee – and that's just for starters.
I may not be able to wrestle a lion, but if it took me on in a battle of bureaucracy, I could reduce it to tears.
Guess what I used to be before I retired due to ill health ?
Don't panic, I was never sympathetic to many things they did.
I must give a 'health warning' to any advice I give but there is in English Law a principle of "Estoppel' and in banking exams the usual example is that if you were to allow a friend or family member to forge a signature on your account, you would be 'estopped' at a later date from refuting liability of any subsequent forgeries. In other words, if you allow something to happen, it can be construed as authority alone, without documentary evidence that it is permitted.
Don't take this as legal advice, but banks get worried by customers who use their own banking terms against them, and the Financial Services Ombudsman are most likely to find in your favour. As taking your complaint to the FOS costs you nothing, and the bank a fee and costs, the mere threat should be enough to make them reasonable and do the decent thing.
I've taken a bank to the FOS and won, so any dimwit can do it.
You also have to wonder why they didn't ring you when the first cheques appeared instead of just bouncing them ? If they thought that the person didn't have authority then surely you'd expect them to notify you.
Oh for the good old days of banking.
Thanks for replying so soon eve.
I don't have a diagnosis as yet but I know my GP well enough to know that she wouldn't mention it if there weren't some cause. I recollect some mention of protein, presumably M protein, but it all took me by surprise and went over my head, and she mentioned that they wanted to do another check in three months, but that's been set aside as I feel so bad.
I own up that kidney cancer seems nothing when compared with myeloma, so I can't allow myself to dwell on it too much. I would never have come up with this from any attempt at self-diagnosis and I don't want to appear concerned in case that causes the doctors to withhold information from me.
My symptoms have never made any sense to the hospital and it's been very frustrating.
Having read some of the stories here it's horrible to think of sufferers who can't describe their problems having to endure this illness. Thankfully I can still think straight when I strain hard and, in spite of my frustrations, I am unable to get excited or argumentative otherwise I would pass out.
Paradoxically I should write my GP a thank you note if I get the dreaded diagnosis as I am certain that many other GP's would have fobbed me off long ago.
Though I'd prefer not to read up too much more on the subject, I have discovered that there are some significant symptoms that I have never mentioned as I didn't believe them to be significant.
I wonder if other sufferers had symptoms prior to significant bone damage. My digestive system is a complete mess and dizziness and balance is a problem.
