???? My diagnosis
Posted , 5 users are following.
hello everyone.
i received a letter from my rheumatologist yesterday following my initial assessment. The results of my last bloods have shown quite high heamaglobin ..... This has been evident over a number of years .... Not picked up by my GP .
further tests have shown that I have a condition called Haemochromatosis ... A genetic disorder which causes the to absorb an excessive amount of iron from your diet .
Her initial investigations from blood only has led her to conclude that there are no signs of rhea motion arthritis for instance .
i am being referred to a haematologist for assessment and best treatment options.
I have not fully researched this condition , but I do still feel that I have presented with symptoms of PMR .
my Dexa scan is on the 13th May , MRI scan of lower back and pelvis 29th of this month .
from the info I have looked at briefly I'm not convinced that this condition would of attacked my body in such a way .......
any thoughts would be appreciated .
helene
1 like, 8 replies
tina-uk_cwall helenemiles
Posted
i would have thought that each of the treatments used would help diagnosis and therefore rule the other condition out. however, I don't suppose it's inconceivable that you could be suffering from both conditions?
All the best. Christina
helenemiles tina-uk_cwall
Posted
thank you for replying .
I have only had a little look , but I too wonder if I have been the unfortunate one to present with both conditions .
My response to pred has been amazing .... My pains both boney and muscular have reduced by 75 % can be comfortable if I rest and do nothing . My 2 attempts of trying to reduce have been awful and has took be back ..... Feeling poorly , significant pain , poor mobility, flare ups particularly the joint below my big toe , hips !!! I gave been back on 20mgs and can say for the first time in weeks I have felt myself ....despite pain and discomfort which increases on exertion or if I try and do something once the pred kicks in.
the muscle weakness in my arms appears to be improving and the awful muscular pains in my upper back appear to have faded . I am still experiencing deep hip pains following walking etc
i have also experienced that different parts of me appear to flare at different times .I am convinced that the awful sweats are very significant to a flare up ....
I have had to be more patient as I have now realised that folowing this 'alien invasion ' that has swept through my body like a tidal wave .... Any activity is followed by pain and discomfort .
i do feel that I am making progress but it has been quite a difficult journey.
Helene
tina-uk_cwall helenemiles
Posted
Maybe once you start treatment for your haemochromatosis your whole well being will improve also. I say that because I have just been prescribed high blood pressure tablets. I have successfully tapered down to 8.5 and I didn't have any return of PMR type pains, great! However, I had a constant ache at the back of my neck that always left me worrying if it could be the beginnings of a flare, but I took the first dose of my blood pressure medication and hey presto the ache in the back of my neck has gone!!!
when I spoke with my friend who is a Dr she said that many people report an ache in the back of their neck with uncontrolled and untreated high blood pressure.
the point I'm making is that when each medical problem we have is being treated and brought under control it causes less stress to our bodies overall and our bodies in turn are more harmonious (heavens, don't I sound happy clappy, but you know what I mean). And, hopefully as each of your conditions respond to their individual treatments, you will in turn feel much better.
another point, you have experienced numerous flares, now this could be because you are not managing the dose and tapering regime correctly, maybe your Dr is pushing you to reduce to quickly and/or by too large a dose drop, I don't know, but my rheumatologist used almost to the letter the Bristol PMR plan and when I got to 10mgs was happy for me to follow Eileen's go slow and almost stop method which I follow, but only ever reduce by .5 not 1mg. But there is a rule that we should never attempt to reduce if we are under the weather, or in trauma and if you think about it, your body to a degree is under considerable stress what with your currently untreated haemochromatosis so any attempt to reduce has been met with resistance hence the flares. Just a thought! All the best, christina
pat73046 helenemiles
Posted
helenemiles tina-uk_cwall
Posted
You are right regarding the reductions in pred ..... And I am sticking to the 20mgs dose until I feel much better .
The mornings are difficult ... But am finding I am feeling better late afternoon as long as I don't do to much .
I really appreciate your support .
helene
helenemiles pat73046
Posted
thank you so very much for your reply .
my hips have been giving me Jip for along time .... I experienced pubis dysphunction whilst pregnant with my little boy in 2002 . They never really improved but I learnt to live with the discomfort . Initially I found that if my hips were out of line the pain was awful ... Once inline I could be reasonably pain free . It was as if the ligaments on my inner thighs were being ripped , pulled . Over the last year they have worsened ... Difficulties getting up from chairs ... Sitting position lots of deep aching .
The lower back pain I have experienced has only come on as a result of this whole body invasion .....
I had a spinal fusion in 2002 and have not had lower back pain since .
My hips now ache like mad .... But since being on pred I have found my hip movement much better . Last week I sat crossed legs on the settee .... I can not remember when I was last able to do this . I have noticed that my hips are noisy , clicky grinds . I do have discomfort going up stairs , especially if I do not ensure I can keep them aligned .
I do certainly feel like an old crock .... My body has aged 20 years since January .
thank you so much again , can't tell you how grateful I am for your support .
quite a lonely place when you have no idea what's going on with your body !!
but very comforting knowing that I can share my woes and concerns on this forum .
it has helped me so much during this tough time .
helene
EileenH helenemiles
Posted
helenemiles EileenH
Posted
I really appreciate your support .
I do need to research this new condition more .... When I have the head space to do so .
just another sign that I now need to listen to my body and adapt and adjust .
thank you again .
helene