Acromegaly Support Group
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.
Hi all I wondered if you could help me out?
As some of you are aware I do not have acromegaly but have a mimicking condition, insulin mediated pseudo acromegaly. For me the only thing missing is the excess of GH. It appears that chronic excess secretion of insulin, due to severe insulin resistance signalled growth. I have many signs and symptoms of acro except no prognathism or gapping of teeth.
I particularly have a lot of trouble with my joints. My knees have bothered me for around 10 years. in more recent years I started to suffer migratory joint pains . I felt like something was slowly sweeping through my body.
My main problem areas are now both knees and both hips and more mildy the bones in my feet. Pains continue to come and go within other areas such as ankles, shoulders wrists and hand bones. I do not have obvious swelling, heat or redness usually associated with inflammatory conditions.
I have now sought a 2nd opinion from another rheumatologist, as my former one was scratching his head. I do have raised CRP and fluctuating ESR both of which are the non-specific inflammatory marker
I have previously tested negative for most rheumy conditions and was told few years back that I have a mild sero-negative arthritis ( just means not positive for rheumatoid factor).
I have always doubted this though as it does not tie in with the pain and discomfort I experience. I also , when having a flare of whatever, get muscle pains in upper legs and arms, a horrid pulsing throbbing pain.
So we now trying to figure out if indeed my joint problems are associated to my condition and maybe just like acro there is derangement of joint structures because of growth/ changes,
This is where I finally get to the gist of this post :)
Can you share your joint pain experiences with me to compare??
What did examinations, xrays scans etc reveal?
I kind of feel that if the rheumy excludes me from inflammatory issues she won't know what to do with me.
Who helps you with your acromegalic arthropathy? Rheumatologist or orthopaedic specialists?
Thank you for taking the time to read and please respond.
Quite frankly there is no where better to seek answers than on here.
I say this having just read through my hospital notes of past 5 years lol. Didn't find any shocks just lots of gaps, blinkered viewpoints, whatever you want to call them
xxx
As some of you are aware I do not have acromegaly but have a mimicking condition, insulin mediated pseudo acromegaly. For me the only thing missing is the excess of GH. It appears that chronic excess secretion of insulin, due to severe insulin resistance signalled growth. I have many signs and symptoms of acro except no prognathism or gapping of teeth.
I particularly have a lot of trouble with my joints. My knees have bothered me for around 10 years. in more recent years I started to suffer migratory joint pains . I felt like something was slowly sweeping through my body.
My main problem areas are now both knees and both hips and more mildy the bones in my feet. Pains continue to come and go within other areas such as ankles, shoulders wrists and hand bones. I do not have obvious swelling, heat or redness usually associated with inflammatory conditions.
I have now sought a 2nd opinion from another rheumatologist, as my former one was scratching his head. I do have raised CRP and fluctuating ESR both of which are the non-specific inflammatory marker
I have previously tested negative for most rheumy conditions and was told few years back that I have a mild sero-negative arthritis ( just means not positive for rheumatoid factor).
I have always doubted this though as it does not tie in with the pain and discomfort I experience. I also , when having a flare of whatever, get muscle pains in upper legs and arms, a horrid pulsing throbbing pain.
So we now trying to figure out if indeed my joint problems are associated to my condition and maybe just like acro there is derangement of joint structures because of growth/ changes,
This is where I finally get to the gist of this post :)
Can you share your joint pain experiences with me to compare??
What did examinations, xrays scans etc reveal?
I kind of feel that if the rheumy excludes me from inflammatory issues she won't know what to do with me.
Who helps you with your acromegalic arthropathy? Rheumatologist or orthopaedic specialists?
Thank you for taking the time to read and please respond.
Quite frankly there is no where better to seek answers than on here.
I say this having just read through my hospital notes of past 5 years lol. Didn't find any shocks just lots of gaps, blinkered viewpoints, whatever you want to call them
xxx
all my joints are very painful too, especially hips and sometimes I limp because of that.
All started with painful knees and shoulders (already in childhood), later my hips started to be painful and wrists and finally some bones in feet. Almost every evening I take a bath and this help a bit to ease the joints pain.
I have often muscle pain too but this could be also side effect from Somavert. When I have cramps I take magnesium and it helps to some extend.
I assume that all this is because of growth (because my reebs hurt too and facial bones), Basedow disease and medicaments.
I am sorry that I can't help you more as I never had any examinations or xrays scans done.
Take care,
Harmony
First visit to a orthopedist was for the knees, i was 18 years old. X-ray exams showed overgrowth of cartilage (joints). Didn't take the 3 months X 6 aspirine a day prescribed to shrink cartilage.
Then at age 40 a rheumatologist for shoulders pain who woke me up every night. His diagnostic without any exam was double tennis elbow (i didn't exercise at all). Prescribed corticoid infiltrations, i didn't take it.
At 45 began daily pain in arms, hands and feet, (joints and bones).
Had the Acro diagnostic at 50. As Harmony says, it's a long process.
Few months before surgery, began a diet without flour (bread, cakes and all alments containing even small amount of flour...) . All pain disapeared in few weeks and now return only when i eat it again. Over the last 2 1/2 years, tried it douzens of time, always same result, pain comes back in few hours. Had tests for alergy, gluten intolerance, fibroscopy... All negative.
Sorry can't give you advise on medication, only on diets. It's unconvenient but it works...
You may want to give it a try for few weeks, and see if you feel better.