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Myositis (Inflammatory Myopathy) Treatment
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- Опубліковано 19 лис 2016
- In this video I explain three of the most important types of Myositis (Inflammation of Muscles) - #Polymyositis, #Dermatomyositis (including CADM and Adermatopathic Dermatomyositis) and #Necrotising Myopathy (including SANAM), their clinical features, diagnostic tests and their treatment. You can find a link to the Cochrane review I referenced, with their latest evidence based review of current treatment options (2012) here www.cochrane.or...
This video is followed by a separate one on Inclusion Body Myositis.
I have been suffering for years with what I now think is what I just watched. Been to every doctor, who I've been told is the "Best" including the over rated JHU circus. What I have realized is every time I go to another "Specialist" they read the notes from the prior "Specialist", tell me to push, pull and squeeze their fingers. No one looks at my skin, atrophy etc. This doctor who made this video has provided answers to every question I have without asking. I'm sorry he's not in our country, which is too busy letting politicians destroy it and get rich as we are the cattle and sheep make to shut up and get in line. Thank you for the video
Are you describing the UK
I wish we had drs here in wv who cared enough to even take the time with us to figure anything out...i wish i lived someplace else
I cant believe after four years of chronic pain, I’ve been looking for an answer and I’ve finally found it. Sometimes your local doctors are useless
Have u had polymyositis?
If I went to an average doctor and told them I think I have myositis, would they even know how to diagnose it? I’ve already spent 40k on chiropractors and another 20k on doctors trying to figure out whats wrong with my body. Im not trying to put myself further in debt
I have the exact same question. I’ve spent a ton of money thinking this disease was something else too lol. I’m pretty sure I have it but am doubting my regular doctors visit I’m about to have.
Hi, had a positive pl-7 antibody last year. After 3 months was retested and negative antibody. Bloods all came back fine apart from mildly low folate levels. Due to the second test coming back normal have been told it’s fibromyalgia and not myositis.
My symptoms do tick a lot of myositis boxes. Recently pain and weakness feel like it’s worse. Is it worth asking for another myositis panel. Doc seems reluctant due to the test being expensive for the NHS. Just relying on normal CK and ANA levels to confirm fibro.
Hi, this is a complex question beyond my expertise. One very much for your Rheumatologist to lead on. Very best though, Simon
I'm diagnosed with "atypical" myositis because apart from muscle pain, tightness and inflammation, my symptoms do not fit nearly into any of the specific named conditions.
My blood work doesn't show high levels for any of the specific auto antibodies in this video. It does show a high level of anti-ku auto antibodies.
Same
@@jdrex5039 did you manage to find any way to solve it? I mean without having to rely on steroids like prednisone and immunosuppresants?
Informative video... Really helpful in my mom disease🙏🙏🙏
Ur mom had polymyositis?
This umbrella of diseases are very cunning and sometimes move really slowly , please make sure you monitor your CK levels - specifically CK-MM which indicates skeletal muscle damage , there are three types of ck ‘s . Monitor aldolase levels and all the other typical inflammatory markers . Some variations of this despises cause a lots of pain and weakness , make sure you find providers that understand it will take a village to take care and monitor this conditions, multidisciplinary approach if you could find it . Keep moving , do not stop moving . Reach out to the Myositis Association/ very helpful. Sometimes there’s overlapping diseases , they don’t come alone ( SAD) . Can happen to anyone from children to elderly, don’t give up asking to be identified, sometimes is a long journey. Ask questions , send messages , advocate for yourself. Keep track , collect data , identify flare ups and get tested during this windows of time .
Take care
Thank you for this information. I've recently tested positive for ANA, have increased levels of creatine kinase and elevated CRP. I also have mild to moderate reduction in kidney function. I have muscle weakness throughout, hands, arms, shoulders, neck, hips and legs with swelling of the right leg, ankle and foot that has persisted for over a year now. I am seeing a rheumatologist currently and in the process of testing for diagnosis. All these point in the direction of myositis or lupus.
I have similar symptoms, pls help
I have SLE Lupus, and am currently seeking answers to a CPK level exceeding 3000. Long term swollen thigh…. Good luck to you!
My grandma also suffering from that disease😢
What was your outcome. I have same symptoms as you
How are you doing now
Oh my goodness! We talked a few months ago about my CMT diagnoses, I found out about year before last.
Well, now my walking as gotten much worse, especially climbing stairs, I can’t lift past my abs, have trouble swallowing, my muscles in my thighs, back and core are ridiculous tight making it hard to move, and my CPK levels are in the 3000s.
My doctor is now diagnosing me with this, in addition to the type 1 diabetes and everything else. I’ll be having a muscle biopsy soon. My sisters are also in the thousands also....
How awful! Sorry to hear this. Bw Simon
Dr Simon Freilich any cure available
I cant walk normally and i am getting worse every day , they found myopathy (obviously polymyositis) a few months ago , i am walking on the treadmill almost every day in order to get better , drink proteins and started taking prohormones (SARMS) ,but they dont help at all !! PLEASE tell me ,do i have any chance and what should i have to do , take ORENDISONE or methotrexate ? PLS HELP !
P.S. - The best doctors in my country (Bulgaria ) looked at me , but they said there is no cure . Obviously you are much better informed , and i would be very grateful if you can help me , i don`t want to end up in a wheelchair . ТНANKS AGAIN !
@@DJURBANBG physiotherapy would surely help ✨
@@abhishekr987 making some gymnastics helps - yes , but you cant build muscles when you have MD
Do we have muscle wasting in myositis
How are you now?
What about painful nodules in muscles everywhere?
Very informative...thanks so much.
R u having any of these disease?
Prednisone is CURATIVE for the widespread pain and inflammation I’ve been dealing with for 15 years. Is this disease presentation ALWAYS symmetrical? Can it be unilateral or symptoms worse on one particular side? Can this disease cause chronic sore throat as well?
Hi Michelle, I'm not so sure about the persistent sore throat being due to the myositis but might be steroid related. Everyone can be affected differently and there can be asymmetry. Bw Simon
Michelle, did you ever find help for your chronic sore throat?
Good job doc !
Hello doctor , Thank you for these great informations .
Iam 35 , I have been suffering from fatigue and muscle wasting all over my body accompanied by tingling feeling , all my blood test are ok except little high CPK ( between 200 - 280 ) and positive ANA (320) . A neurologist took biopsy from my arm and she said that i have a congenital muscle disease called ( CFTD - Congenital Fiber Type Disproportion ) .. what do you think , I’m still suffering from pain and the muscle wasting is still going .. thank you
Dr Freilich, What are the other common blood test?
You mentioned CPK - and others...?
Great question. In terms of the basic bloods. The CPK looks at a breakdown product from the muscles and this is important in establishing that the muscles are indeed inflamed. There are dedicated blood tests that look for other signs of inflammation such as the ESR and CRP, together with the Full Blood Count. Renal Function (and Electrolyte) testing is important to see if they're part of the process or being affected in the process. Thyroid function trends to be checked as well. Then, very importantly, there are the autoimmune panels of tests. This is where it becomes an alphabet soup so please excuse for not trying to list them out and which are more relevant to each condition! Anyone with these conditions should be under the guidance and care of a rheumatologist or neurologist (sometimes both) and they will order the relevant blood tests. Bw Simon
Yyppppppppppppp
excellent explanation, thank you!
Alright .... Thank you
sorry to be off topic but does someone know a method to log back into an instagram account??
I stupidly forgot the login password. I would appreciate any assistance you can offer me
@Jesse Duncan instablaster =)
I experience burning feelings in my thigh muscles at times ,could this be a sign of this diseas
It could be. Please have your doctor run a blood test to check levels of CK and C-reactive protein. Please have yourself checked. This can be a very debilitating disease
@@alvirjee I cant walk normally and i am getting worse every day , they found myopathy (obviously polymyositis) a few months ago , i am walking on the treadmill almost every day in order to get better , drink proteins and started taking prohormones (SARMS) ,but they dont help at all !! PLEASE tell me ,do i have any chance and what should i have to do , take ORENDISONE or methotrexate ? PLS HELP !
P.S. - The best doctors in my country (Bulgaria ) looked at me , but they said there is no cure . Obviously you are much better informed , and i would be very grateful if you can help me , i don`t want to end up in a wheelchair . ТНANKS AGAIN !
@@DJURBANBG We can chat on Whatsapp. I will share my experience with you.
@@alvirjee please contact me. I also have polymyositis.
@@DJURBANBG please contact me. I also have polymyositis.
Myopathy treatment possible
Awesome! Thank you.
.
Dr very interesting- where are you located- need to see you as my doctor
Hello Dr my sister sufrrring from polymyositis plz give sugestion
What treatment you gave to her n how is she now?
How is ahe?
Cured
And 2021 still not curable
Treatment? ?
I am a physio and came see a patient with this necrotic myositis
Suggest me the approach to this condition Coz the patient is just 19 yr old
I have polymyositis, pls help
Can u havemyositis with normal bloodwork?
Yes, it does happen. Bw Simon
Ncs and emg test
thumbs up
Great v great
Is there anyone here came after knowing actress heAlthcondition ..😮😮
Thank you, I was wondering why there was a sudden spike in viewing activity for this video. Wishing her and anyone similarly affected a speedy recovery.
God bless doc 😊
@@DrSimonFreilich yeah actress Samantha indian actress is diagnosed with the same auto immune condition. Hence we are all worried
شكرا
שקראן
Thanks dr 🙏
Detail
What speciality of doctors can treat this.
Hi, either Neurologists or Rheumatologists. Bw Simon
Thank you sir.
Debasis Palit . Kolkata .India
@@DrSimonFreilich can u help me??
Pls dr help me.
My brother have polymyositis disease .
@@asmaabbas2270 i too have polymyositis.
Plz help me sir
Hi, I can't answer individuals and I'd suggest that you remove your phone number ASAP. Bw Simon
thank you very much sir i always follow your lectures and gain more knowledge.
hi
i am saqib, Polymyositis patient since three years.
would you like to help me of any sort. to guide me what can i do to recover from this.
Are you all blood test are normall
@@abdulsaqib3105 Did you found any treatment , i am getting worse every day .. did you tried OREDNISONE or any other medication , PLS ANSWER !
@@DJURBANBG No i don't have Polymyositis. I was misdiagnosed by my doctors. I have LGMD 2B.
@@DJURBANBG Tell your doctor to try IVIG treatment
shit, looks like i got it
Please help me I suffer myositis now and I want to be cured.
Hi how are you?
I was told there is no cure