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Experiences with
Polymyositis
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Hello
My husband has had
polymyositis
for around 14 years. We live in Devon.
My husband has had
polymyositis
for around 14 years. We live in Devon.
aprille2150
in
Myositis UK
8 years ago
Dermatomyositis - Information & links
Specialist in Dermatomyositis,
Polymyositis
and Adult Juvenile. Member of the UK Myonet group (the research/advocacy group of doctors and researchers in the UK).
Specialist in Dermatomyositis,
Polymyositis
and Adult Juvenile. Member of the UK Myonet group (the research/advocacy group of doctors and researchers in the UK).
Jo-Goode
Administrator
in
Myositis UK
8 years ago
Polymyositis - Information & links
Specialist in Dermatomyositis,
Polymyositis
and Adult Juvenile. Member of the UK Myonet group (the research/advocacy group of doctors and researchers in the UK).
Specialist in Dermatomyositis,
Polymyositis
and Adult Juvenile. Member of the UK Myonet group (the research/advocacy group of doctors and researchers in the UK).
Jo-Goode
Administrator
in
Myositis UK
8 years ago
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Suspected myositis
Maybe you guys can help me out, I've already been diagnosed with lupus but for the past little while I've noticed gradual weakness in my upper and lower body although so far finding it much worse in my arms shoulders and upper back area, I've been dropping dishes whilst trying to wash them because they're
Maybe you guys can help me out, I've already been diagnosed with lupus but for the past little while I've noticed gradual weakness in my upper and lower body although so far finding it much worse in my arms shoulders and upper back area, I've been dropping dishes whilst trying to wash them because they're
Linorandthewolf
in
Myositis UK
8 years ago
Tofranil?
Has anyone here had experience taking Tofranil and what should I expect? My lovely new doctor is finally coming around to deciding that I may have some form of CTD but is not really sure how he's going to tackle it and minimise unnecessary toxicity. Before we go head first into hydroxy he wants to try
Has anyone here had experience taking Tofranil and what should I expect? My lovely new doctor is finally coming around to deciding that I may have some form of CTD but is not really sure how he's going to tackle it and minimise unnecessary toxicity. Before we go head first into hydroxy he wants to try
1985mum
in
LUPUS UK
8 years ago
Dry eyes and celluvisc 1% drops (carmellose)
Hi everyone, Went to collect my prescription today and my surgery can't get these for some reason. The bright doctor says use twice the amount of the weaker one (0.5%). I ask you! Anyone know of another preservative free drop I can use instead of a similar type. I alsouse hyloforte and lacrilube
Hi everyone, Went to collect my prescription today and my surgery can't get these for some reason. The bright doctor says use twice the amount of the weaker one (0.5%). I ask you! Anyone know of another preservative free drop I can use instead of a similar type. I alsouse hyloforte and lacrilube
Stephanietee
in
LUPUS UK
8 years ago
Questions
Hi everyone I'm 50, male and was diagnosed with raynauds and limited scleroderma with overlap
polymyositis
almost a year ago. I've got a rheumatologist who's been monitoring my symptoms, but doesn't seem to have answers for a few of them.
Hi everyone I'm 50, male and was diagnosed with raynauds and limited scleroderma with overlap
polymyositis
almost a year ago. I've got a rheumatologist who's been monitoring my symptoms, but doesn't seem to have answers for a few of them.
72Spencer
in
Scleroderma & Raynaud's UK (SRUK)
8 years ago
I am new to the site
I know that autoimmune diseases normally run in family and it is rampid in mine; MS, diabetes, RA,
Polymyositis
, Fibro, Lupus, and Thyroid. This site has been very useful to me.
I know that autoimmune diseases normally run in family and it is rampid in mine; MS, diabetes, RA,
Polymyositis
, Fibro, Lupus, and Thyroid. This site has been very useful to me.
Tink45
in
LUPUS UK
8 years ago
Leg pain ?!
Hi Everyone, Wondering if you guys have any similar experience: Just had a really horrendous virus (may bank holiday) like influenza style, which I thought I was recovering from then it brought a really bad cough, I felt dreadful, then last week I started getting pain in my feet that came into my calves
Hi Everyone, Wondering if you guys have any similar experience: Just had a really horrendous virus (may bank holiday) like influenza style, which I thought I was recovering from then it brought a really bad cough, I felt dreadful, then last week I started getting pain in my feet that came into my calves
Hidden
in
Scleroderma & Raynaud's UK (SRUK)
8 years ago
Senior GP WILL refer to Lupus specialist!
Hi all Well. I read my prepared request. The snr GP straight away went on the computer and I asked for the form with the password. He said he was trying to do just that but MRI would not come up. He said sometimes if my RHEUMY not ok it, it would not come up (?) I reiterated my lack of faith in current
Hi all Well. I read my prepared request. The snr GP straight away went on the computer and I asked for the form with the password. He said he was trying to do just that but MRI would not come up. He said sometimes if my RHEUMY not ok it, it would not come up (?) I reiterated my lack of faith in current
Footygirl
in
LUPUS UK
8 years ago
Ablation
This turned out to be"
polymyositis
", something else to add to the leaking heart valves and pyoderma gangrenosum. We all feel sorry for ourselves and ultimately it is only natural to think of ourselves. But those of us who have been on CCU wards no that there is always someone worse off.
This turned out to be"
polymyositis
", something else to add to the leaking heart valves and pyoderma gangrenosum. We all feel sorry for ourselves and ultimately it is only natural to think of ourselves. But those of us who have been on CCU wards no that there is always someone worse off.
cabledeck
in
AF Association
9 years ago
Knackered legs
Hi Lupies, I was wondering if anyone else has legs that don't seem right. I've been reading up on Myositis and think it could answer my questions on why my legs are so weird!! They don't hurt too much but are so tired they ache. It seems to be centred around my thighs and gluts. It is making walking
Hi Lupies, I was wondering if anyone else has legs that don't seem right. I've been reading up on Myositis and think it could answer my questions on why my legs are so weird!! They don't hurt too much but are so tired they ache. It seems to be centred around my thighs and gluts. It is making walking
Alison-Brown
in
LUPUS UK
9 years ago
Daughter with autoimmune probs
He and her neuro think she may have
polymyositis
. Neuro wants her to have a muscle biopsy, rheum says no because he will treat her either way.
He and her neuro think she may have
polymyositis
. Neuro wants her to have a muscle biopsy, rheum says no because he will treat her either way.
Worriedmamahere
in
LUPUS UK
9 years ago
Lost & confused
Hi, I'm not sure where to start really but here goes. 30 years ago at the age of 16 was diagnosed with
polymyositis
after having severe weakness, pain and fatigue. I went into remission at 22yrs old.
Hi, I'm not sure where to start really but here goes. 30 years ago at the age of 16 was diagnosed with
polymyositis
after having severe weakness, pain and fatigue. I went into remission at 22yrs old.
NessaR
in
LUPUS UK
9 years ago
MRI Scan with Contrast side effects?
I have had my appointment for another MRI scan but this time with the contrast injection Does anyone know what the side effects might be? I always have a reaction to inoculations so am not looking forward to this one
I have had my appointment for another MRI scan but this time with the contrast injection Does anyone know what the side effects might be? I always have a reaction to inoculations so am not looking forward to this one
Hidden
in
Pernicious Anaemia Society
9 years ago
B12 deficiency & muscle weakness & muscle fatigue
I have had a very high CPK test result of 6,332 and have been referred for
polymyositis
. Does anyone have any experience of recovery of muscle fatigue due to B12 deficiency and could you describe your experience please. Many thanks everyone out there!
I have had a very high CPK test result of 6,332 and have been referred for
polymyositis
. Does anyone have any experience of recovery of muscle fatigue due to B12 deficiency and could you describe your experience please. Many thanks everyone out there!
Robin_Young_1201
in
Pernicious Anaemia Society
9 years ago
Need to understand my result I have an appointment June 30 but it is driving me crazy not knowing
Antigen Detected DNA(ds,ss) Suggested Disease Association High Titers - SLE Pattern: Speckled Antigen Detected Sm, RNP, SCL-70 Suggested Disease Association SLE, MCTD, Scleroderma, Sjogrens SS-A/SS-B Pattern Nucleolar Antigen Detected SCL-70, PM-1/SCL Suggested Disease association Scleroderma
Polymyositis
Antigen Detected DNA(ds,ss) Suggested Disease Association High Titers - SLE Pattern: Speckled Antigen Detected Sm, RNP, SCL-70 Suggested Disease Association SLE, MCTD, Scleroderma, Sjogrens SS-A/SS-B Pattern Nucleolar Antigen Detected SCL-70, PM-1/SCL Suggested Disease association Scleroderma
Polymyositis
Bamasoul
in
LUpus Patients Understanding and Support
9 years ago
Emerging role of long non-coding RNAs in autoimmune diseases
innate and adaptive immune responses, immune cell development, and differential expression of lncRNAs in autoimmune diseases, including systemic lupus erythematosus (SLE), rheumatoid arthritis (RA), type 1 diabetes mellitus (T1DM), multiple sclerosis (MS), autoimmune thyroid disease (AITD), psoriasis,
polymyositis
innate and adaptive immune responses, immune cell development, and differential expression of lncRNAs in autoimmune diseases, including systemic lupus erythematosus (SLE), rheumatoid arthritis (RA), type 1 diabetes mellitus (T1DM), multiple sclerosis (MS), autoimmune thyroid disease (AITD), psoriasis,
polymyositis
helvella
Thyroid UK
in
Thyroid UK
9 years ago
Diastematomyelia
Well finally got my mri results n hve been diagnosed with the above and spinal cord tethering on parts of my spine has anyone else been diagnosed with this dont really know alot bout it other than it means my spine has split!! Is this classed as a disability?
Well finally got my mri results n hve been diagnosed with the above and spinal cord tethering on parts of my spine has anyone else been diagnosed with this dont really know alot bout it other than it means my spine has split!! Is this classed as a disability?
Kellamitch
in
LUPUS UK
9 years ago
Is anything 'better' than before?
I know this sounds like a really bizarre question but I'm going to ask anyway: Has anybody noticed if some skills are actually better than before they were ill? After treatment, obviously. My example is this - I was always fit, I had that kind of lifestyle, but I was never sporty. In fact I was a joke
I know this sounds like a really bizarre question but I'm going to ask anyway: Has anybody noticed if some skills are actually better than before they were ill? After treatment, obviously. My example is this - I was always fit, I had that kind of lifestyle, but I was never sporty. In fact I was a joke
Poppet11
in
Pernicious Anaemia Society
10 years ago
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