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.
Oops – I meant polymyositis.
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.
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.
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.
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 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.
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.
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.
That's correct Badger. Ever since I had kidney cancer it's been a figure close to my heart, if that doesn't sound contradictory).
They say that it indicates how well your kidneys function as a percentage, but don't get over excited if you're not 100% – no one is.
Unless it's very low no one will get too excited – say 20% or so, but you can live quite happily at 30%. What will concern them more is any sudden unexplained drop. Another thing to take in to account is that it can vary quite widely between readings.
There seem to be many readings they take that when they are out of line they ignore, but that's probably because there'll be obvious physical symptoms if you have a problem. It's just something they monitor.
Mine's varied between 50% and 70% more recently over the years and I doubt that my kidneys are improving with age. Anyone's reading should deteriorate over time.
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 !:-)
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.
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.
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.
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.
