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Polymyositis
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Polymyositis and MPN link
I suspect there is a link between
Polymyositis
and the MPN. Does anyone know anything about a link? God Bless Anna
I suspect there is a link between
Polymyositis
and the MPN. Does anyone know anything about a link? God Bless Anna
Hidden
in
Myositis UK
6 years ago
spinal cord degeneration / lesions
Do any of you have lesions on your spine or in your brain from b12 deficiency? If so, did they resolve? How long did it take? I'm very scared that I may have lesions. I've been on b12 4 months now (levels are now fine) and still have significant swelling in my neck, seemingly extending up into my brain
Do any of you have lesions on your spine or in your brain from b12 deficiency? If so, did they resolve? How long did it take? I'm very scared that I may have lesions. I've been on b12 4 months now (levels are now fine) and still have significant swelling in my neck, seemingly extending up into my brain
blue2323
in
Pernicious Anaemia Society
6 years ago
Explanation please?
Hello everyone, I post all the time on this site but I’m new to Myositis UK. I’ve always had a psoriasis, chronic headaches/migraines and psoriasis. I found out about 1-1/2 years ago most of my pain was from undiagnosed psoriatic arthritis and psoriatic spondylitis. I’m preparing to see a pain
Hello everyone, I post all the time on this site but I’m new to Myositis UK. I’ve always had a psoriasis, chronic headaches/migraines and psoriasis. I found out about 1-1/2 years ago most of my pain was from undiagnosed psoriatic arthritis and psoriatic spondylitis. I’m preparing to see a pain
amberly87
in
Myositis UK
6 years ago
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New here, still waiting for treatment
Latest thinking is that my
polymyositis
is being caused by a thyroid issue. I’m waiting to see which department at the hospital will take over my care. My CK level is currently 8000 and I have a lot of muscle wasting in my leg and core.
Latest thinking is that my
polymyositis
is being caused by a thyroid issue. I’m waiting to see which department at the hospital will take over my care. My CK level is currently 8000 and I have a lot of muscle wasting in my leg and core.
helipops
in
Myositis UK
6 years ago
Hi all
Hi I recently had an EMG test because of my blood work & symptoms & inflammatory, I have Sjogren's Syndrome too. I have a positive Anti-Ro antibody & my EMG test showed abnormalities in my muscles, but nerve test was Okish, I do have other abnormal blood work, but my consultant was investigating these
Hi I recently had an EMG test because of my blood work & symptoms & inflammatory, I have Sjogren's Syndrome too. I have a positive Anti-Ro antibody & my EMG test showed abnormalities in my muscles, but nerve test was Okish, I do have other abnormal blood work, but my consultant was investigating these
Angellealea1
in
Myositis UK
6 years ago
Hi all
Hi I recently had an EMG test because of my blood work & symptoms & inflammatory, I have Sjogren's Syndrome too. I have a positive Anti-Ro antibody & my EMG test showed abnormalities in my muscles, but nerve test was Okish, I do have other abnormal blood work, but my consultant was investigating these
Hi I recently had an EMG test because of my blood work & symptoms & inflammatory, I have Sjogren's Syndrome too. I have a positive Anti-Ro antibody & my EMG test showed abnormalities in my muscles, but nerve test was Okish, I do have other abnormal blood work, but my consultant was investigating these
Angellealea1
in
LUPUS UK
6 years ago
Relaxing Image
Something for you to hopefully enjoy and to Relax to. I'm enjoying painting it helps keep my mind off pain. Barnclown shared her thoughts about how important it would be for me to rely on my knowledge of relaxation techniques. Reiki, aromatherapy, meditation and gong baths (that one sounds terrible
Something for you to hopefully enjoy and to Relax to. I'm enjoying painting it helps keep my mind off pain. Barnclown shared her thoughts about how important it would be for me to rely on my knowledge of relaxation techniques. Reiki, aromatherapy, meditation and gong baths (that one sounds terrible
Ladyuponthelake
in
LUPUS UK
6 years ago
Early satiety with PA?
Still sitting it out with my GP as to my actual diagnosis, but one thing I'm wondering about in part as far as the two types of gastric antibodies is, is inability to digest or absorb food and nutrients a "thing"? I always seem to get full quickly, and it's been worse lately. I'm not getting shots yet
Still sitting it out with my GP as to my actual diagnosis, but one thing I'm wondering about in part as far as the two types of gastric antibodies is, is inability to digest or absorb food and nutrients a "thing"? I always seem to get full quickly, and it's been worse lately. I'm not getting shots yet
nifuarain-63
in
Pernicious Anaemia Society
6 years ago
B12 deficiency - self medicating
Hi There. Enquiring on behalf of my partner who has recently been diagnosed with a B12 deficiency. He has terrible symptoms but the dr's are unwilling to treat him. He has been using a spray from Holland & Barratt which has helped a little but he is really desperate and wants now to self medicate. I
Hi There. Enquiring on behalf of my partner who has recently been diagnosed with a B12 deficiency. He has terrible symptoms but the dr's are unwilling to treat him. He has been using a spray from Holland & Barratt which has helped a little but he is really desperate and wants now to self medicate. I
Kaylz1985
in
Pernicious Anaemia Society
6 years ago
Interstitial lung disease and polymyositis
I am a 40 year old mum of twin girls and in 2008 was diagnosed with
polymyositis
a connective tissue disease where your immune system attacks you I have managed to hold down full time work until 2017 when I noticed even the smallest distance or something as simple as hanging washing out left me breathless
I am a 40 year old mum of twin girls and in 2008 was diagnosed with
polymyositis
a connective tissue disease where your immune system attacks you I have managed to hold down full time work until 2017 when I noticed even the smallest distance or something as simple as hanging washing out left me breathless
Twinsmum10
in
Lung Conditions Community Forum
6 years ago
Spontaneous bruising (toes)
My husband thinks it could be linked to my Raynauds or Scleroderma (I have Raynaud and Scleroderma/
polymyositis
overlap.)
My husband thinks it could be linked to my Raynauds or Scleroderma (I have Raynaud and Scleroderma/
polymyositis
overlap.)
SadieMeg
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Weak, achey muscles.
Hi, I've been having really bad problems with weak and achey muscles in my legs and arms. This stops me from walking for more than 10 minutes or so and can stop me from lifting a drink to my mouth if my arms are particularly bad. It isn't constant but it seems to be happening more and more. My Rheumatologist
Hi, I've been having really bad problems with weak and achey muscles in my legs and arms. This stops me from walking for more than 10 minutes or so and can stop me from lifting a drink to my mouth if my arms are particularly bad. It isn't constant but it seems to be happening more and more. My Rheumatologist
eescvc
in
LUPUS UK
6 years ago
My rheumy steps it up - and free CPD!
For the second time, I am posting to praise my rheumy. I saw him on Monday to review my myositis and today he rang me at home - again - with the results of the bloods. I've subsequently discovered that he is on a day off today. So blooming well done, Dr X. I still need to work on him though. In the
For the second time, I am posting to praise my rheumy. I saw him on Monday to review my myositis and today he rang me at home - again - with the results of the bloods. I've subsequently discovered that he is on a day off today. So blooming well done, Dr X. I still need to work on him though. In the
whisperit
in
LUPUS UK
6 years ago
Prednisolone diary 11 - switching to methyl pred
As I posted recently, I've newly developed myositis and my rheumy was keen to give high dose iv steroids. But past experience has been that even small increases in my normal daily pred dose of 4mg causes incapacitating side effects. After discussion with endocrinologist, rheumy agreed to try some variants
As I posted recently, I've newly developed myositis and my rheumy was keen to give high dose iv steroids. But past experience has been that even small increases in my normal daily pred dose of 4mg causes incapacitating side effects. After discussion with endocrinologist, rheumy agreed to try some variants
whisperit
in
LUPUS UK
6 years ago
How are you?
David Shrigley has it about right. I've deteriorated quite badly in the last couple of weeks, with increasing muscle weakness and fatigue now making it hard to stand. I've seen my rheumy and endo and had muscle MRIs last week. Tomorrow, a muscle biopsy. Rheumy says he is sure I will need IV methylprednisolone
David Shrigley has it about right. I've deteriorated quite badly in the last couple of weeks, with increasing muscle weakness and fatigue now making it hard to stand. I've seen my rheumy and endo and had muscle MRIs last week. Tomorrow, a muscle biopsy. Rheumy says he is sure I will need IV methylprednisolone
whisperit
in
LUPUS UK
6 years ago
Myositis UK Afternoon Tea Meetup Manchester 19th May
*** LAST FEW PLACES AVAILABLE *** Myositis UK Afternoon Tea Meetup - Manchester 19th May Guest Speakers: Dr Hector Chinoy & Dr Liza McCann 😬 Free to Myositis UK members (membership also free) https://www.meetup.com/MyositisUK/events/247837886/ #MyositisUK #Dermatomyositis #
Polymyositis
*** LAST FEW PLACES AVAILABLE *** Myositis UK Afternoon Tea Meetup - Manchester 19th May Guest Speakers: Dr Hector Chinoy & Dr Liza McCann 😬 Free to Myositis UK members (membership also free) https://www.meetup.com/MyositisUK/events/247837886/ #MyositisUK #Dermatomyositis #
Polymyositis
Jo-Goode
Administrator
in
Myositis UK
6 years ago
MCT oil seems to be helping with 'permanent' brain damage, from B12 deficiency ? ..been one week
Took coconut oil as well, but decided to try this, and it appears to be working better? Please dont lose hope, you probably dont. Please do your own research too of course, and know whats safe. Just my experience. Thank you for letting us all have this place to help each other.
Took coconut oil as well, but decided to try this, and it appears to be working better? Please dont lose hope, you probably dont. Please do your own research too of course, and know whats safe. Just my experience. Thank you for letting us all have this place to help each other.
Fl17
in
Pernicious Anaemia Society
6 years ago
New! Question about diagnostic tests
Hi all, I'm new here and have not been diagnosed with myositis but have similar symptoms to this and fibromyalgia. My question is, my bloods show elevated CK but normal-low CRP. Does the CRP level indicate that it can't be myositis since CRP shows inflammation? Therefore I have low inflammation levels
Hi all, I'm new here and have not been diagnosed with myositis but have similar symptoms to this and fibromyalgia. My question is, my bloods show elevated CK but normal-low CRP. Does the CRP level indicate that it can't be myositis since CRP shows inflammation? Therefore I have low inflammation levels
oogleboogle
in
Myositis UK
6 years ago
Hello - investigations pending
Just to introduce myself - I've been on the LupusUK Health Unlocked forum for some time now, after a diagnosis of MCTD (with ILD and Raynaud's) two years ago. I've been aking hydroxychloroquine and prednisolone but have struggled with fatigue and weakness for many months. Recently I've been experiencing
Just to introduce myself - I've been on the LupusUK Health Unlocked forum for some time now, after a diagnosis of MCTD (with ILD and Raynaud's) two years ago. I've been aking hydroxychloroquine and prednisolone but have struggled with fatigue and weakness for many months. Recently I've been experiencing
whisperit
in
Myositis UK
6 years ago
Rapid decline in ability - do I go to my GP?
Hi, I've posted here quite a lot since my UCTD diagnosis. So thanks for all the support. Now I have another question. I had my last rheumatology appointment last week. The doctor said he suspects I have myositis in my large muscles especially my thighs. He's ordered a MRI and I may start methotrexate
Hi, I've posted here quite a lot since my UCTD diagnosis. So thanks for all the support. Now I have another question. I had my last rheumatology appointment last week. The doctor said he suspects I have myositis in my large muscles especially my thighs. He's ordered a MRI and I may start methotrexate
eescvc
in
LUPUS UK
6 years ago
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