This topic contains 37 replies, has 6 voices, and was last updated by 
Pilgrim 12 years, 8 months ago.
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.
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
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"
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.
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 :-S
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 :-0 but that said I could have walked out of MY GP's and been none the wiser :-S Scary or what:-0
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" 😎
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 !:-)
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.
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"
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.
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
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.
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"
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.
Graham, All the best for Thursday.
Mavis
And Hi Tom
Thanks for that info. very interesting.
Keep battling on!
Best wishes Mavis
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.
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