This topic contains 37 replies, has 6 voices, and was last updated by 
Pilgrim 12 years, 8 months ago.
A little background.
I am 59 years of age and had a radical nephrectomy in 2007 in respect of kidney cancer but have been increasingly unwell since then. Getting treatment for kidney cancer was an uphill struggle and my illness thereafter seems to have caused me to be labelled a hypochondriac, but I feel quite ghastly now.
My GP had previously mentioned bone cancer, and I appreciate it's a risk with kidney cancer, but I dismissed it as I imagined I would have severe bone pain. I also believed that claiming bone cancer would only make my hypochondria reputation worse.
Today my GP mentioned myeloma and she has been doing a lot of blood tests but I have had so many bad reactions from the NHS I didn't dare to ask as to why she thought this was relevant.
Though I don't have a diagnosis, as yet, I thought it might be useful to begin posting as a pre-diagnosis member to describe what happens.
My GP sent me to the local hospital last week but I had to leave as I had a bad reception and I can't handle anything that stresses me. I will say no more about that.
Anyway – I visited my GP today. She took a urine sample and has added an urgent haematology referral to an already arranged appointment to an arthritis consultant.
As you might imagine – to go from hypochondriac to potentially myeloma is quite a turnaround and I thought nothing after kidney cancer could concern me, but a little reading about myeloma has disproved that idea,
Today I also had an x ray of my shoulder which has been troubling me. mores since Immediately after having a flu jab it flared up horribly, as well as provoking a bout of flu (I know it's not a live vaccine).
The relief that someone believed I was ill was much tempered by the mention of myeloma.
I'll update you as to progress. The worry is that my GP would never diagnose anything, which I understand, and would leave it to the specialist, so mention of myeloma isn't a speculative guess.
Hello Pilgrim
I think you have done the right thing finding out as much as you can,Myeloma is sometimes very hard to diagnose,and often gets over looked as a cause for some ones illness,at least you have a good GP who has taken note of what you have said and acted on it.Many people get over looked until there bones start breaking then the correct blood test and urine test are done.
If the GP has taken blood and urine and has diagnosed possible myeloma,the only way it can be confirmed 100% is by a bone marrow biopsy,plus full body exray for damage to bones and MRI scan
It sounds very scary but I should imagine in your case at least you will know were you stand plus you have already had cancer,you will find other people on this site,that have not had the best of treatment until it was diagnosed.My advice to you is keep to this site also look at contacting Ellen the nurse who can send you information,so when you do see consultant you will know a little about the condition.Eve
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.
Hello Pilgrim
Welcome to this site! I know you will find it helpful.
I do hope you get a diagnosis one way or the other soon. Do bear in mind that, even if you do, if your protein level isn't too high you need not nessacarily need to have treatment straight away, apart form something for the bones – probably zometa monthly which isn't a problem.
All best wishes. Do let us knpow how you get on.
Mavis
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.
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,
Hi Graham
good Luck for Thursdayay 😀
As for symptoms well I went to my GP for what I described as if somebody had rolled up a towel and pushed it under my Lower rib(left side) I was told it was either a pulled muscle or a bruised rib? and that as they say is the start 😎 Once again Graham all the best for thursday
Tom "Onwards and Upwards"
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.
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.
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.
Pilgrim
Thank you for these two links. I was very interested in the article on SMM as I think that is what I have.
So sorry it is still taking it out of you. do hope things settle down for you soon.
Very best wishes
Mavis
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,
Forgive me if I prattle on to myself, but this is one heck of a roller coaster ride, with not too many ups involved.
Since last Saturday evening I have been feeling utterly awful and barely capable of anything. The sensation has been like a flu virus with the feeling of being hung over too (though I don't drink alcohol). I can't get over how much it feels like a virus at ts worst with my neck aching on both sides and being little more than a zombie. Then at dinner time today it felt as if a cloud lifted for no good reason. I still feel as if elephants have been using me as a football but the change is remarkable. These ups and downs are playing hell with brain function as it's all so inexplicable.
I can only imagine that my immune system is firing off at full blast for no apparent reason. I only wish I could make a booking for its next salvo.
I've got an appointment for a bone survey, though I'd prefer not to even contemplate anything going wrong with my bones.
To be honest I feel quite light headed now – which is very much preferable to how I have been feeling, but it's my body controlling my moods rather than vice versa. When I'm on a downswing there's not much I can do to dig myself up out of it.
Five days until they take a bone marrow sample. That should be fun, but with this illness you either get on the bus or stick as you are, and get worse. It's not really a choice.
Hi sorry you have been feeling rotten hope it doesnt last long. Have you asked for sedation when you have your bone marrow biopsy? I would definitely advise sedation no point putting up with pain when there is a choice Good luck Bridget
Thanks for the comment Bridget.
I had read one description of the biopsy experience which would unnerve anyone, but I believe it was a rare reaction. You can never dismiss anyone else's pain or experience, and even moreso with cancer as it affects people in so many different ways. It makes us unique in ways we don't like.
I had a local anaesthetic and 'happy gas' which was all that was necessary. It amounted to two quick sharp injection like pains and an uncomfortable numbing ache that made me want to kick my leg out. Often if you appear calm to the nurses it helps them relax and be more gentle, rather than feeling they have to hold you down.
All in all, my experience was nothing to mention really, but the nurse said some people had walked out without going through with it.
When I mentioned bone cancer the nurse appeared to suggest that the test was related to blood cancer, which I don't know if that's a technical splitting of hairs, or significant. As I was feeling brave I asked to see the slides they'd prepared.
16th February all will be revealed.
They didn't appear very interested in my 24 hour urine collection.
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