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.
Call the Myeloma Infoline
0800 980 3332
If you're affected by myeloma
My GP asked if I'd heard of myeloma
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.
RE: My GP asked if I'd heard of myeloma
06-01-2012 at 12:28 AM
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
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
RE: My GP asked if I'd heard of myeloma
08-01-2012 at 2:24 PM
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.
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.
RE: My GP asked if I'd heard of myeloma
10-01-2012 at 5:15 PM
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,
RE: My GP asked if I'd heard of myeloma
10-01-2012 at 7:19 PM
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"
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"
RE: My GP asked if I'd heard of myeloma
11-01-2012 at 12:15 PM
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.
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.
RE: My GP asked if I'd heard of myeloma
12-01-2012 at 4:51 PM
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.
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.
RE: My GP asked if I'd heard of myeloma
16-01-2012 at 4:52 PM
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.
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.
RE: My GP asked if I'd heard of myeloma
17-01-2012 at 12:39 AM
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
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
RE: My GP asked if I'd heard of myeloma
17-01-2012 at 12:24 PM
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,
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,
RE: My GP asked if I'd heard of myeloma
18-01-2012 at 3:29 PM
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.
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.
RE: My GP asked if I'd heard of myeloma
19-01-2012 at 5:19 PM
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
RE: My GP asked if I'd heard of myeloma
23-01-2012 at 9:32 PM
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.
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.
RE: My GP asked if I'd heard of myeloma
27-01-2012 at 9:14 AM
The bout of flu-like illness I had last week wasn't good enough so I repeated it again this week.
Having flu once a year is bad enough (for a man) but having ir repeat weekly is beyond a joke. My myeloma (as yet unconfirmed) appears to flare with flu like symptoms which makes it hard even to grin and bear it.
Next week is free from tests and appointments until the following week.
Today I'm throwing myself out of the door to take my mother on a trip - or vice versa. I think she loves the idea that she may end up being able to walk quicker than me. Must get outside in the fresh air and think about something else.
Having flu once a year is bad enough (for a man) but having ir repeat weekly is beyond a joke. My myeloma (as yet unconfirmed) appears to flare with flu like symptoms which makes it hard even to grin and bear it.
Next week is free from tests and appointments until the following week.
Today I'm throwing myself out of the door to take my mother on a trip - or vice versa. I think she loves the idea that she may end up being able to walk quicker than me. Must get outside in the fresh air and think about something else.
RE: My GP asked if I'd heard of myeloma
27-01-2012 at 12:37 PM
Well I for one find "your prattling on" amusing so just you put down what you want. Best of luck with all your test.
kindest regards - vasbyte
David
kindest regards - vasbyte
David
RE: My GP asked if I'd heard of myeloma
29-01-2012 at 12:14 PM
And I also it has made me smile in many of your thoughts he he.
Keep up the Good Fight and keep on Prattling
Tom "Onwards and Upwards"
Keep up the Good Fight and keep on Prattling
Tom "Onwards and Upwards"
RE: My GP asked if I'd heard of myeloma
30-01-2012 at 4:24 PM
I'm trying hard to restrain myself - but it's not easy.
Being as objective as I can, I don't believe that I have myeloma, which is reassuring as that probably means I'm not a hypochondriac either, otherwise I'd settle on the worst possible diagnosis available. The only contrary view is that of my GP, who is very cautious by nature, and the initial blood results.
My reasoning is that most sufferers appear to only become aware of their illness after some traumatic bone injury, and I have no such injury or damage. Also, sufferers appear mostly to be asymptomatic with much higher pp results than mine.
I'm up to my ears in symptoms. I now have 'night sweats' on and off, which are rather shocking. Waking up feeling as if you have become a blast furnace is very strange, especially when you know you ought to be freezing cold. My whole illness appears to be a cycling powerful immune reaction and aches and pains tend to come and go though certain areas and movements are wise to avoid, but I don't sense that they are bone pains, though I feel pain as pain and don't like to feel responsible for apportioning blame. I can pint to where it hurts with a finger but I want to avoid following my GP's thoughts as to what's responsible without evidence.
I'll just have to be patient.
Being as objective as I can, I don't believe that I have myeloma, which is reassuring as that probably means I'm not a hypochondriac either, otherwise I'd settle on the worst possible diagnosis available. The only contrary view is that of my GP, who is very cautious by nature, and the initial blood results.
My reasoning is that most sufferers appear to only become aware of their illness after some traumatic bone injury, and I have no such injury or damage. Also, sufferers appear mostly to be asymptomatic with much higher pp results than mine.
I'm up to my ears in symptoms. I now have 'night sweats' on and off, which are rather shocking. Waking up feeling as if you have become a blast furnace is very strange, especially when you know you ought to be freezing cold. My whole illness appears to be a cycling powerful immune reaction and aches and pains tend to come and go though certain areas and movements are wise to avoid, but I don't sense that they are bone pains, though I feel pain as pain and don't like to feel responsible for apportioning blame. I can pint to where it hurts with a finger but I want to avoid following my GP's thoughts as to what's responsible without evidence.
I'll just have to be patient.
RE: My GP asked if I'd heard of myeloma
30-01-2012 at 8:15 PM
Hi Graham
Just to let you know I was diagnosed in Jan 09, that was after I went to see my GP in December 08 with what can only be described as I felt that I had a rolled up towel under my lower eib (left side) I felt no pain or any distress apart from the feeling that I had a "Fat" Lower rib
To cut a long story shorter (I hope) after telling the Dr and the second Dr that came in to give a 2nd oppiniun that it needs further tests and that was Bloods,urine and X rays where upon I was then sent to see a Chest and Lung Consultant who then sent me to see the Dr that I am under now and the one that confirmed I had MM
but that said I could have walked out of MY GP's and been none the wiser Scary or what
The best Patiant is the one that knows his/her own body and can guid the Dr cos they aint all that
as for me I would push it and if after the pushing it turns out to be??? wind then at least its sorted
Good Luck with it Graham.
Tom "Onwards and Upwards"
Just to let you know I was diagnosed in Jan 09, that was after I went to see my GP in December 08 with what can only be described as I felt that I had a rolled up towel under my lower eib (left side) I felt no pain or any distress apart from the feeling that I had a "Fat" Lower rib
To cut a long story shorter (I hope) after telling the Dr and the second Dr that came in to give a 2nd oppiniun that it needs further tests and that was Bloods,urine and X rays where upon I was then sent to see a Chest and Lung Consultant who then sent me to see the Dr that I am under now and the one that confirmed I had MM
but that said I could have walked out of MY GP's and been none the wiser Scary or what The best Patiant is the one that knows his/her own body and can guid the Dr cos they aint all that
as for me I would push it and if after the pushing it turns out to be??? wind then at least its sorted
Good Luck with it Graham.
Tom "Onwards and Upwards"
RE: My GP asked if I'd heard of myeloma
01-02-2012 at 8:46 AM
That's helpful Tom. My main affected areas are my abdomen and shoulder but, though I tend to feel awful most of the time, I am all 'singing and dancing' compared with other sufferers here. I don't want to think about any treatment making me feel worse than I do now but symptoms are beginning to accumulate and intensify at a worrying rate.
The strangest thing is that if I can get walking or moving it is therapeutic whereas sitting and lying down for any length of time doesn't do me any good.
I'm taking my mother to Coningsby to see the Battle of Britain Memorial Flight (not flying of course) and I'd go bananas if I couldn't get out - though being with my mother has much the same effect.
Spring is coming - happy thoughts !
The strangest thing is that if I can get walking or moving it is therapeutic whereas sitting and lying down for any length of time doesn't do me any good.
I'm taking my mother to Coningsby to see the Battle of Britain Memorial Flight (not flying of course) and I'd go bananas if I couldn't get out - though being with my mother has much the same effect.
Spring is coming - happy thoughts !
RE: My GP asked if I'd heard of myeloma
07-02-2012 at 11:20 AM
X ray skeletal survey tomorrow and Rheumatology the day after. That should be fun.
Feeling very ghastly and fragile and I still don't think it's myeloma but, whatever it is, I don't expect it to be nice.
Nurses always want me to move at double quick time and that leads to drama, which doesn't help.
Feeling very ghastly and fragile and I still don't think it's myeloma but, whatever it is, I don't expect it to be nice.
Nurses always want me to move at double quick time and that leads to drama, which doesn't help.
RE: My GP asked if I'd heard of myeloma
07-02-2012 at 12:29 PM
Hi Graham
Well Good with it all I know its an uphill struggle but it has to be done, the xray wont hurt but you will be in a long time so after the Nurse has forced you to rush you can have a nice long lie in.
Good Luck for thos two days and please keep us posted.
Regards
Tom "Onwards and Upwards"
Well Good with it all I know its an uphill struggle but it has to be done, the xray wont hurt but you will be in a long time so after the Nurse has forced you to rush you can have a nice long lie in.
Good Luck for thos two days and please keep us posted.
Regards
Tom "Onwards and Upwards"
RE: My GP asked if I'd heard of myeloma
08-02-2012 at 1:15 PM
Having had the bone marrow biopsy I've today received an appointment for an MRI scan of my spine.
That doesn't sound so good, and maybe I'm soon to become a card carrying member of the forum in spite of my protestations. It appears that I have passed on to step two of the investigative process.
It still doesn't explain why my abdomen is so awful.
Ironically the scan is on a Sunday which guarantees me a good long walk beforehand.
Having already had kidney cancer I believe that this should all have been handled by urology, so I think I have a lot to thank my GP for. I think she's somehow managed to arrange this without their involvement.
There are parts of my body unlikely to see soap again to judge by how creaky I was in the shower today.
This is fun - you attend one appointment and get two in return.
That doesn't sound so good, and maybe I'm soon to become a card carrying member of the forum in spite of my protestations. It appears that I have passed on to step two of the investigative process.
It still doesn't explain why my abdomen is so awful.
Ironically the scan is on a Sunday which guarantees me a good long walk beforehand.
Having already had kidney cancer I believe that this should all have been handled by urology, so I think I have a lot to thank my GP for. I think she's somehow managed to arrange this without their involvement.
There are parts of my body unlikely to see soap again to judge by how creaky I was in the shower today.
This is fun - you attend one appointment and get two in return.
RE: My GP asked if I'd heard of myeloma
09-02-2012 at 12:52 AM
Hi Graham
sory the saga is continuing. All the best with the tests.
And Hi Tom!
Very interested in the symptoms you describe with your rib pain. It is very like something I have (especially the rolled up dish cloth bit!). I haven't mentioned it to my Consultant as it does somewhat come and go in severity. What did they do for yours and did you ever find the exact cause. You have probably gathered from my other posts that I'm not one to want any treatment I can avoid.
Will appreciate your imput.
Best wishes.
Mavis
sory the saga is continuing. All the best with the tests.
And Hi Tom!
Very interested in the symptoms you describe with your rib pain. It is very like something I have (especially the rolled up dish cloth bit!). I haven't mentioned it to my Consultant as it does somewhat come and go in severity. What did they do for yours and did you ever find the exact cause. You have probably gathered from my other posts that I'm not one to want any treatment I can avoid.
Will appreciate your imput.
Best wishes.
Mavis
RE: My GP asked if I'd heard of myeloma
09-02-2012 at 1:58 PM
I suppose that i must wait until next Thursday before I know anything and it's a pointless waste of effort trying to second guess what might be going on.
The x ray survey was okay except that lying on my left shoulder is very painful. I'm not sure that it's a bone issue but that wasn't my diagnosis.
The visit to rheumatology today was very disappointing. I arrived there close to collapse due to the cold and they didn't examine me or perform any test of any sort. The doctor was nice enough but it all seemed a waste of time. Presumably my records will now show that I have been examined by rheumatology.
The MRI scan appointment coming along later may not be significant.
The problem is that it doesn't appear that it will provide an obvious answer to my abdominal ailment and that's what causes me most problems.
I'll bite my tongue until Thursday next.
The x ray survey was okay except that lying on my left shoulder is very painful. I'm not sure that it's a bone issue but that wasn't my diagnosis.
The visit to rheumatology today was very disappointing. I arrived there close to collapse due to the cold and they didn't examine me or perform any test of any sort. The doctor was nice enough but it all seemed a waste of time. Presumably my records will now show that I have been examined by rheumatology.
The MRI scan appointment coming along later may not be significant.
The problem is that it doesn't appear that it will provide an obvious answer to my abdominal ailment and that's what causes me most problems.
I'll bite my tongue until Thursday next.
RE: My GP asked if I'd heard of myeloma
09-02-2012 at 6:56 PM
Hi Mavis
Well as for the "Rolled up Towel" for me it was not painful at all and two yep two of my local gp's told me its was a pulled musclel or a bruised rib?
the reason I had two was I told the first one she was wrong thats when the 2nd one came in checked me over and said she concurured with colleage,
And to make it short I then started to smack the right rib area real hard and started to breath in and out deep and fast and twist my body left to right and up and down and all of those would cause me severe pain if I had what they said but told them I had no pain, Do I THINK I needed an xray? yes please say I and as the say the rest is history MM and to be fair one of the dr's did phone me up to say sorry
Hope this helps Mavis
Hi Graham my we are having a hard time of it keep strong
Tom "Onwards and Upwards"
Well as for the "Rolled up Towel" for me it was not painful at all and two yep two of my local gp's told me its was a pulled musclel or a bruised rib?
the reason I had two was I told the first one she was wrong thats when the 2nd one came in checked me over and said she concurured with colleage,
And to make it short I then started to smack the right rib area real hard and started to breath in and out deep and fast and twist my body left to right and up and down and all of those would cause me severe pain if I had what they said but told them I had no pain, Do I THINK I needed an xray? yes please say I and as the say the rest is history MM and to be fair one of the dr's did phone me up to say sorry
Hope this helps Mavis
Hi Graham my we are having a hard time of it keep strong
Tom "Onwards and Upwards"
RE: My GP asked if I'd heard of myeloma
14-02-2012 at 12:52 PM
I have to admit that my relationship with the local Health Authority could best be described as having irretrievably broken down after what's happened before, but let's not go over that.
I was in an awful state when I got to rheumatology, so wasn't best pleased with what happened. I have no idea what is afflicting me but appointments of that nature achieve nothing. It make me worry that I'm on a 'tick box' schedule going nowhere.
The dilemma with Thursday is that no one in their right mind would welcome a diagnosis of myeloma, but without it I'm left with no explanation as to the cause of my symptoms. Even if they decide it's myeloma I can't avoid the issue of my abdomen, which has become something I almost fear mentioning, because that's the one symptom that overrides all others. It almost inevitably means that we'll be speaking at crossed purposes.
Anyway - two days to go and all will be revealed - or not. I will gladly concede that haematology were a lot more engaged than rheumatolgy - so i do have hope.
I was in an awful state when I got to rheumatology, so wasn't best pleased with what happened. I have no idea what is afflicting me but appointments of that nature achieve nothing. It make me worry that I'm on a 'tick box' schedule going nowhere.
The dilemma with Thursday is that no one in their right mind would welcome a diagnosis of myeloma, but without it I'm left with no explanation as to the cause of my symptoms. Even if they decide it's myeloma I can't avoid the issue of my abdomen, which has become something I almost fear mentioning, because that's the one symptom that overrides all others. It almost inevitably means that we'll be speaking at crossed purposes.
Anyway - two days to go and all will be revealed - or not. I will gladly concede that haematology were a lot more engaged than rheumatolgy - so i do have hope.
RE: My GP asked if I'd heard of myeloma
14-02-2012 at 1:23 PM
Graham, All the best for Thursday.
Mavis
And Hi Tom
Thanks for that info. very interesting.
Keep battling on!
Best wishes Mavis
Mavis
And Hi Tom
Thanks for that info. very interesting.
Keep battling on!
Best wishes Mavis
RE: My GP asked if I'd heard of myeloma
16-02-2012 at 6:02 PM
The result.
The prime result is that Haematology are professional, efficient and talked to me, and that's been lacking with others I've dealt with. Only they did ask if I'd had a blood test prior to the appointment which would have been unlikely as I hand't been asked to arrange one. No problem - they did one on the spot.
My abdomen was awful as usual but they said I was MGUS with pp at four point something. I have a spinal MRI on Sunday as it was mentioned that there was some abnormality. I didn't want to ask too much about that and mentioned my abdomen which is usually the trigger for a doctor to leap down my throat, but I received a sensible reaction. It was suggested it COULD be related to the spine, though that seems doubtful to me - but what do I know ?
Having established my confidence it was much easier for me to be receptive to what they said. The shoulder they don't believe is a bone issue, and I can accept that, and who needs a left arm anyway ? It's not a major handicap as long as I don't stretch or move it in the wrong direction.
The funny thing is that the spine is the least troublesome of all my problems. Perhaps I should have asked more but I didn't want to spoil the relationship when clearly I wasn't going to get any sort of meaningful reply.
MRI Sunday and next appointment 19th April. A long way off becoming a qualifying forum member (good) but no nearer finding a solution to what ails me (not so good).
No point commenting again until then really.
The prime result is that Haematology are professional, efficient and talked to me, and that's been lacking with others I've dealt with. Only they did ask if I'd had a blood test prior to the appointment which would have been unlikely as I hand't been asked to arrange one. No problem - they did one on the spot.
My abdomen was awful as usual but they said I was MGUS with pp at four point something. I have a spinal MRI on Sunday as it was mentioned that there was some abnormality. I didn't want to ask too much about that and mentioned my abdomen which is usually the trigger for a doctor to leap down my throat, but I received a sensible reaction. It was suggested it COULD be related to the spine, though that seems doubtful to me - but what do I know ?
Having established my confidence it was much easier for me to be receptive to what they said. The shoulder they don't believe is a bone issue, and I can accept that, and who needs a left arm anyway ? It's not a major handicap as long as I don't stretch or move it in the wrong direction.
The funny thing is that the spine is the least troublesome of all my problems. Perhaps I should have asked more but I didn't want to spoil the relationship when clearly I wasn't going to get any sort of meaningful reply.
MRI Sunday and next appointment 19th April. A long way off becoming a qualifying forum member (good) but no nearer finding a solution to what ails me (not so good).
No point commenting again until then really.
RE: My GP asked if I'd heard of myeloma
16-02-2012 at 8:34 PM
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.
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.
RE: My GP asked if I'd heard of myeloma
17-02-2012 at 9:16 AM
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"
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"
RE: My GP asked if I'd heard of myeloma
19-02-2012 at 12:07 PM
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.
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.
RE: My GP asked if I'd heard of myeloma
19-02-2012 at 3:37 PM
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"
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"
RE: My GP asked if I'd heard of myeloma
20-02-2012 at 11:34 AM
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
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
RE: My GP asked if I'd heard of myeloma
21-02-2012 at 11:04 PM
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.
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.
RE: My GP asked if I'd heard of myeloma
22-02-2012 at 2:23 PM
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.
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.
eve
RE: My GP asked if I'd heard of myeloma
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