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Polymyositis
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IBM
I’ve been diagnosed with IBM inclusion body Myositis which sounds horrid so doing a lot of research atm I’m in Melbourne Australia anyone know of any help or successful therapy for this or would be greatly appreciated am 61 🙏
I’ve been diagnosed with IBM inclusion body Myositis which sounds horrid so doing a lot of research atm I’m in Melbourne Australia anyone know of any help or successful therapy for this or would be greatly appreciated am 61 🙏
annparas
in
Foggy's "Invisible Illness" Support
4 years ago
Niacinamide?
I have b12 deficiency and possibly epi (no diagnoses have been made) and I ordered some multi minerals and vits for daily use along with oregano oil to take with caprylic acid for a three week treatment that may help with fungal or other infections - i also ordered niacinamide but for the life of me
I have b12 deficiency and possibly epi (no diagnoses have been made) and I ordered some multi minerals and vits for daily use along with oregano oil to take with caprylic acid for a three week treatment that may help with fungal or other infections - i also ordered niacinamide but for the life of me
Luac
in
Pernicious Anaemia Society
4 years ago
Has anyone been treated for DM without steroids? Or how quickly did you get off of prednisone if you have?
I have Dermatomyositis, as partially confirmed by a skin biopsy, all the symptoms, etc. My doctor also wants me to have a muscle biopsy just to rule out other kinds of myopathies. I think my journey with DM started long before I knew what it was, I began getting a sun sensitive malar rash about 3 years
I have Dermatomyositis, as partially confirmed by a skin biopsy, all the symptoms, etc. My doctor also wants me to have a muscle biopsy just to rule out other kinds of myopathies. I think my journey with DM started long before I knew what it was, I began getting a sun sensitive malar rash about 3 years
zoeavacado
in
Myositis UK
4 years ago
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Status from my PMR (?) journey
So they called the special unit for inflammatory disease and now it seems that they all agree that something is wrong, and that it is not PMR but a connective tissue disease like
polymyositis
/dermatomyositis, Lupus or the like.
So they called the special unit for inflammatory disease and now it seems that they all agree that something is wrong, and that it is not PMR but a connective tissue disease like
polymyositis
/dermatomyositis, Lupus or the like.
krillemy
in
PMRGCAuk
5 years ago
Can it be autoimmune?
EMNG - made for legs numbness- showed mild positived for Myastenic syndrom and
polymyositis
. I have another neurology exam at 28.02. I will probably have to do Prostigmin test and antibodys for Myasthenia. Regarding Sicca I need to do Salivary Glands scyntigraphy at April. Uf!
EMNG - made for legs numbness- showed mild positived for Myastenic syndrom and
polymyositis
. I have another neurology exam at 28.02. I will probably have to do Prostigmin test and antibodys for Myasthenia. Regarding Sicca I need to do Salivary Glands scyntigraphy at April. Uf!
MatPatP
in
LUPUS UK
5 years ago
Stereoids with bradycardia and few more questions.
EMNG - made for legs numbness- showed mild positived for Myastenic syndrom and
polymyositis
. I have another neurology exam at 28.02. I will probably have to do Prostigmin test and antibodys for Myasthenia. Regarding Sicca I need to do Salivary Glands scyntigraphy at April. Uf!
EMNG - made for legs numbness- showed mild positived for Myastenic syndrom and
polymyositis
. I have another neurology exam at 28.02. I will probably have to do Prostigmin test and antibodys for Myasthenia. Regarding Sicca I need to do Salivary Glands scyntigraphy at April. Uf!
MatPatP
in
LUPUS UK
4 years ago
Polymyositis
After 4yrs of testing and 2 consultants the diagnosis is now probably
polymyositis
. However the CK reading was only slightly raised and they are now sending me for an echocardiogram?
After 4yrs of testing and 2 consultants the diagnosis is now probably
polymyositis
. However the CK reading was only slightly raised and they are now sending me for an echocardiogram?
Hidden
in
Myositis UK
5 years ago
Intrinsic factor antibody
Hi guys I’ve just had an intrinsic factor antibody blood test came back as 1.45U/ml with I think a reference range of 0.00-6.00 can anyone explain what that means?
Hi guys I’ve just had an intrinsic factor antibody blood test came back as 1.45U/ml with I think a reference range of 0.00-6.00 can anyone explain what that means?
Pixielula
in
Pernicious Anaemia Society
5 years ago
Severe leg pain/weakness
Does anyone get severe leg pain (mainly thigh and calf) and leg weakness? I find getting up each morning very tricky due to pain and sometimes when I stand my legs physically shake. I have noted I’m losing muscle tone in my thighs but I do try to walk frequently. Walking has become hard and something
Does anyone get severe leg pain (mainly thigh and calf) and leg weakness? I find getting up each morning very tricky due to pain and sometimes when I stand my legs physically shake. I have noted I’m losing muscle tone in my thighs but I do try to walk frequently. Walking has become hard and something
flowflow
in
Scleroderma & Raynaud's UK (SRUK)
5 years ago
Negative Body Image
Hi there, Sorry for this post. It is a bit self indulgent with all the problems everyone has. I have been waiting over a year to see a neurology physiotherapist. My neurologist wants a specialist assessment done as they don't want to go down the route of a muscle biopsy as I have problems with blood
Hi there, Sorry for this post. It is a bit self indulgent with all the problems everyone has. I have been waiting over a year to see a neurology physiotherapist. My neurologist wants a specialist assessment done as they don't want to go down the route of a muscle biopsy as I have problems with blood
DoylerOz
in
Myositis UK
5 years ago
Azathioprine didnt work,what next?
Hello Everyone I was diaganosed with
Polymyositis
18 months ago. Was on 150mg Azathioprine and had tappered to 8mg prednisone daily. Unfortunately my hips, leg pains and muscle fatigue did not improve much after the initial 2 months.
Hello Everyone I was diaganosed with
Polymyositis
18 months ago. Was on 150mg Azathioprine and had tappered to 8mg prednisone daily. Unfortunately my hips, leg pains and muscle fatigue did not improve much after the initial 2 months.
Fleetwood49
in
Myositis UK
5 years ago
Can I have PMR with normal CRP
However due to normal CRP I have been put through all kinds of test from ALS ,MR and cancer to
polymyositis
and Lyme disease (borrelia). They all said that if they did not find anything it must be PMR ON TILL they changed their mind.
However due to normal CRP I have been put through all kinds of test from ALS ,MR and cancer to
polymyositis
and Lyme disease (borrelia). They all said that if they did not find anything it must be PMR ON TILL they changed their mind.
krillemy
in
PMRGCAuk
5 years ago
IBM diagnosis today
Hi All. I have just been diagnosed with inclusion body Myositis and I am just overwhelmed by this and not knowing what to do next. I will be seeing the neurologist again at the end of this month for next steps but just wondered how to cope in the interim period. Having gone through blood tests, CT scans
Hi All. I have just been diagnosed with inclusion body Myositis and I am just overwhelmed by this and not knowing what to do next. I will be seeing the neurologist again at the end of this month for next steps but just wondered how to cope in the interim period. Having gone through blood tests, CT scans
InspireMe
in
Myositis UK
5 years ago
Cannabis oil
Has anyone used medical cannabis oil for
polymyositis
?
Has anyone used medical cannabis oil for
polymyositis
?
Pinetown
in
Myositis UK
5 years ago
Rollercoaster
He has
Polymyositis
which is a rare auto immune disorder so has been on steroids to control this. They gave him antibiotics & everything worsened. A week later he was in Icu as he was struggling to breathe. He was put into an Induced coma & worsened quickly. Proned three times on high oxygen.
He has
Polymyositis
which is a rare auto immune disorder so has been on steroids to control this. They gave him antibiotics & everything worsened. A week later he was in Icu as he was struggling to breathe. He was put into an Induced coma & worsened quickly. Proned three times on high oxygen.
Tillystar
in
ICUsteps
5 years ago
Feeling really bad with a very heavy cold
I know it’s petty asking about colds but do people with
polymyositis
get prone to heavy colds.Im really struggling at the moment and thinking about the last time I had a cold like this which ended with pneumonia. Trying hard not to let it happen again.but feel really unwell.
I know it’s petty asking about colds but do people with
polymyositis
get prone to heavy colds.Im really struggling at the moment and thinking about the last time I had a cold like this which ended with pneumonia. Trying hard not to let it happen again.but feel really unwell.
Hidden
in
Myositis UK
5 years ago
In pain from recovering muscles
Hi, I'm slowly improving from
polymyositis
, but any mild exercises, puts a strain on my upper and lower back and other muscles causing a lot of pain. I order a back brace to help. Also in home PT started this up so I am going to go to on site PT.
Hi, I'm slowly improving from
polymyositis
, but any mild exercises, puts a strain on my upper and lower back and other muscles causing a lot of pain. I order a back brace to help. Also in home PT started this up so I am going to go to on site PT.
Maggie7171
in
Myositis UK
5 years ago
New diagnosed PM
I have limited knowledge around
polymyositis
, but will learn, learn and learn. Just feel quite low looking at all the other problems associated with it.
I have limited knowledge around
polymyositis
, but will learn, learn and learn. Just feel quite low looking at all the other problems associated with it.
Hidden
in
Myositis UK
5 years ago
Lupus with vasculitis
I really have the body pain symptoms of
polymyositis
. I need to get back on another biologic and in the states the biologic has to be approved for the specific disease. The doc is trying to get me on Orencia. Just curious if anyone has a similar story.
I really have the body pain symptoms of
polymyositis
. I need to get back on another biologic and in the states the biologic has to be approved for the specific disease. The doc is trying to get me on Orencia. Just curious if anyone has a similar story.
Aleish
in
LUPUS UK
5 years ago
Hot sweats
Consultant thinks I have
polymyositis
and is just waiting final test results .I just wondered if having hot sweats,sweating far more than I have ever done has any connection to that disease,and no,it’s not my age,I am 74
Consultant thinks I have
polymyositis
and is just waiting final test results .I just wondered if having hot sweats,sweating far more than I have ever done has any connection to that disease,and no,it’s not my age,I am 74
Hidden
in
Myositis UK
5 years ago
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