Experiences with

Polymyositis

Hi I was diagnosed with Polymyositis 2 years ago after a muscle biopsy on my left thigh The area where the muscle biopsy took place is still very painful so much that I can't have any one touch it. Does anyone else have this problem?

I had 3 weeks in hospital under observation and was discharged with no diagnosis except “possible polymyositis”, no prognosis and no treatment. I still have not seen a neuro physio although it has been almost 4 weeks since discharge. Is this a usual time span before getting treatment?

Hi, I’ve been diagnosed with Polymyositis (Jan 25) and i’m really struggling with hair loss, has anyone else experienced this? And if so any help or suggestions to help stop this would be greatly appreciated.

ANA TITTER high at 1:320 Nuclear Nucleolar pattern scleroderma , polymyositis , and Sjögren’s syndrome ANA TITER low 1:40 Nuclear Speckled can be associated with lupus , Sjögren’s syndrome , and polymyositis.

Would like to find out if there is a support/forum group re Inclusion Body Myositis in East Sussex as I do not know anyone with this disease and would like to find out more information

I was diagnosed approx 20 yrs ago aged 40. My condition has progressed to the point that I can no Ionger walk and my arms are getting weaker. I am bed ridden for 95% of the time mainly due to chronic pain in my lower back area. This prevents me from staying in a seated position for less than 1 hour.

Hi everyone, I have had Raynaud for a 4-5 years both in the hands and feet. This year it is affecting hands more. Up to a month ago it was diagnosed as primary, because antibody tests were negative (2021). then last month they came back positive with ENA Scl-70 at 63. Doctors I spoke to say this is

I have at last been diagnosed with Polymyositis, having gone privately to the London Neurology Clinic. I am on prednisonal and a tummy lining tablet for the last 2 weeks after 3 months of battling for information as to when or where I would get tests from my Health Authority.

I had a blood test and got the result today - I haven't a clue what this means?? Any ideas? Intrinsic factor antibody level Intrinsic factor antibody level < 0.5 U/mL [0.0 - 6.9]; Negative <7 Equivocal 7 - 10 Positive >10 I can't even work out which part of the above is the result? I receive B12

My GP discovered that I had elevated liver enzyme 7800 April 23 and sent me an ambulance to be thoroughly checked and went through CT San, MRI etc, seen by Hepatologist and Rheumatologist who suspected Myositis and after muscle biopsy on my thigh, she confirmed I have Mhositis. Since then, I have been

"Long time member of PMRUK. What I thought was r/o, new physical evidence has brought me here. The PMR community has been great for the past 2 years, but they believe I may receive better guidance here in the Myositis forum. Honestly, as you read my latest post in the PMR forum I may not belong here

Hi, I have been diagnosed with systemic sclerosis/myositis, I lost 20kg, and I eat a lot but have no weight gain, if I eat fats I have big problems with reflux. Is anyone here experiencing the same problem? Thank you

Hello everyone. Still going through the phase of being diagnosed even though I do have a current diagnosis of mctd. But my Ssa Ro52 was positive and Ana 1:640 nucleolar and symptoms lean more toward Sjögren and myositis. I will be going to a rheumatology center soon. But I wanted to know has anyone

Hi, I'm Ian. Sorry for this long post. Just found out today after a 7+ yr journey of trying to figure out what is wrong with me that I have markers for Myositis ok my blood work. I started with very low key fatigue almost 10 years ago, with brain fog calling around 7 years ago (trip to the memory service

Hi everyone, I've been lurking this forum for some time and thought I'd share my story. I am a 35 year old male; around 5 years ago I noticed muscle loss in my quadriceps and neck. I was worried and saw a neurologist. Various tests have been done. MRIs - All came back normal. EMGs - All came back

Muscle cramps, aches, proximal symmetrical muscle weakness, stiffness, polymyositis, and exercise intolerance may be the only presenting symptom indicating hypothyroidism. We present five cases of acute on chronic pain that improved significantly on treatment with thyroxine.

I am newly diagnosed with polymyositis and ILD (caused by the polymyositis). I have had chest infections over the past three months while on mycophenolate. Where as the ILD cough is dry and non productive I have been ver wheezing and the cough is very productive.

hello lovely people of this wonderful forum - seeking any insight or guidance I was diagnosed (11 months ago) with scleroderma & myositis with lung involvement (ILD) on Mycophenolate for treatment. Despite being very cautious and careful, I have just tested positive for Covid, (having avoided it

hello lovely people of this wonderful forum - seeking any insight or guidance I was diagnosed (11 months ago) with scleroderma & myositis with lung involvement (ILD) on Mycophenolate for treatment. Despite being very cautious and careful, I have just tested positive for Covid, (having avoided it

I have been speaking with the sister of a friend recently, who is battling various autoimmune diseases for 16 years now (hashimoto, RA and recently also diagnosed with systemic sclerosis and polymyositis), who has told me about this.