😭 tears are running down my cheeks as I listen to your journey. I had 'mechanic's hand' since 2021. I thought it was an allergy to soil as I had started gardening. Then I started having joints pain. I thought it was because I had started Strength Training. A physiotherapist also said it's because I was doing it wrong ! Wrong posture according to him. It was only last month that I was diagnosed with rhumatoid arthritis. Last week, my JO-1 results came and Rheumatologist now says there's an overlap with myosotis. (poly/dermato). I'm scared of the complications. It's a relief to know that you were able to heal your ILD. I hope you are doing well. Bless you.
Thank you for sharing your history and what you went through to get to the dx. I have hEDS and am currently being evaluated for Myositis I also have Sjogrens Syndrome. Just being told that there is something else going on that can be treated versus just being told there is no treatment or being turned away because the doctor is not familiar can be so disheartening. Thank you for sharinng your story Dale.
Miss Dale, It is heartbreaking to hear your describing your illness without a correct diagnosis for months and months. I agree that primary physicians should all be trained to recognize one or more symptoms of a myositis condition early. Now, I’ll tell you and everyone else my story in abbreviated form. I do have polymyositis, dx in my 50s. I noticed one day that my left pinky wasn’t working just right when gripping a lawn care bucket. That weakness persisted for a very few weeks, and then on my next visit to my MD, I mentioned this pinky problem, and he promptly referred me to a local neurologist. After getting the normal regimen of tests (blood, EMG, and soon thereafter a muscle biopsy), I was diagnosed with polymyositis. Like you, I was prescribed Prednisone and Imuran. That was about 20 years ago, and during that time I have lost a considerable amount of muscle mass, but am still ambulatory. I won’t go into other problems with weakness, but there are plenty. What I want to emphasize is the importance of a primary physician’s absolute training to recognize myositis symptoms early. It’s not that difficult, and modern tests can point doctors in the right direction to make a correct diagnosis much sooner. Now, the ongoing question is, what causes myopathies? I don’t know, but I’ll say this, I never had this problem until I started taking statins for elevated cholesterol. I can’t prove it, but I’ll always believe that was the cause. Best wishes on your journey with polymyositis.
I just got a pre diagnosis of Polymyositis today. Something didn't feel right starting back in October 2021, slowly progressing through the months, but December is when I knew for sure it was more than not exercising. So, I went in as a walk-in patient, and my blood was drawn. They took 8 viles. My liver enzymes were very high, and my weakness was getting worse. My primary Dr advocated for me to get seen by a neurologist right away. I got seen within 2 weeks. I had my neurology appointment today and was told it may be Polymyositis. They want to start me on prednisone, but I'm really nervous about taking it. I do all herbal remedies for my diabetes. But, they're saying prednisone is the only treatment for this condition. I've read and experienced what prednisone can do through family members, so that's why I'm scared to take it. This is all new and stressful. I don't know what to do and expect.
Thanks so much for sharing your story. I'm now dealing with what is suspected is Polymyositis. I'm "fortunate" in that my PCP listened to me when I saw her for extreme muscle weakness and decided to test me for muscle connectivity diseases. Once she received the results she immediately had me see a rheumatologist who has been pretty good at sending me for additional testing. Thanks again for sharing.
Also make sure they test you for “Limb Girdle “ as well cause a lot of ppl has been misdiagnosed with polymyositis if your not familiar with it please google it cause more of my symptoms were of limb gridle than the myositis so I’m getting the test done now
@@pcherry5.052 Hi there. Thanks for the feedback. Unfortunately, as a result of all the testing I went through, I was diagnosed with Breast Cancer. The Polymyositis was triggered as a result of the cancer which is not unusual. Thankfully, I had a great team of doctor's and once I went through several test as a process of elimination, the breast cancer was detected when I had a CT Scan & MRI. Once the Cancer was addressed, the polymyositis resolved itself. God Bless.
I agree with her about how you cannot look at a person and tell what's going on inside? Also, the amount of pain he or she has? Including primary doctors need to listen more to the patients when they complaint. It's not always inside a person head. Great video.
Thank you for sharing! I’m on my journey to be diagnosed, even though with all my symptoms I’ve determined that I have a type is myositis! It’s a debilitating nightmare!
Oh dear yes it is. I’ve had this fir 7 years. My life has changed. Gained lots if weight because of the prednisone. Have you tried the Imuron she talks about?
I've been diagnosed with Myositis. I continue to have high CK levels it's like every where I go no one knows what I have or how to properly treat me. I've been in the hospital for last 3 months unable to sand from low spaces or comb my hair. Just little things of daliy living are hard for me. I want to get back home to take care of my children. I need help if anyone can help please respond to me. Thank you!
Hi. I also have myositis. My CK levels were really high at 15,000. With the ivig infusions I have been taking and fasting and eating healthier my levels have almost come back down to normal range
Hello Dale...thanks for ur story I have polymyositis as well and I have been in a wheelchair for over 10 yrs..i have had tried so many medicines but none has really helped me..wwas in a high dosage of prednisone 60mg three times a day which only caused me to loose oxygen to my hip and now I have bone lost so I came off of it and was put on methotrexate and I did the IVIG drips for 2 yrs and nothing has changed I'm still in wheelchair no muscle strength lost and none gain what other medicine can I take that might hlp?#needinghelp
Love the fact how she mentioned how people have a hard time with someone looking well outside when you aren't well.
Doctors should never make a patient feel like it's all in their head because they don't have an answer.Its very discouraging& disrespectful.
😭 tears are running down my cheeks as I listen to your journey. I had 'mechanic's hand' since 2021. I thought it was an allergy to soil as I had started gardening.
Then I started having joints pain. I thought it was because I had started Strength Training. A physiotherapist also said it's because I was doing it wrong ! Wrong posture according to him.
It was only last month that I was diagnosed with rhumatoid arthritis. Last week, my JO-1 results came and Rheumatologist now says there's an overlap with myosotis. (poly/dermato). I'm scared of the complications. It's a relief to know that you were able to heal your ILD.
I hope you are doing well.
Bless you.
Thank you for sharing your history and what you went through to get to the dx. I have hEDS and am currently being evaluated for Myositis I also have Sjogrens Syndrome. Just being told that there is something else going on that can be treated versus just being told there is no treatment or being turned away because the doctor is not familiar can be so disheartening. Thank you for sharinng your story Dale.
Im sorry to hear that I hope you find answer soon
Miss Dale,
It is heartbreaking to hear your describing your illness without a correct diagnosis for months and months.
I agree that primary physicians should all be trained to recognize one or more symptoms of a myositis condition early.
Now, I’ll tell you and everyone else my story in abbreviated form. I do have polymyositis, dx in my 50s. I noticed one day that my left pinky wasn’t working just right when gripping a lawn care bucket. That weakness persisted for a very few weeks, and then on my next visit to my MD, I mentioned this pinky problem, and he promptly referred me to a local neurologist. After getting the normal regimen of tests (blood, EMG, and soon thereafter a muscle biopsy), I was diagnosed with polymyositis. Like you, I was prescribed Prednisone and Imuran. That was about 20 years ago, and during that time I have lost a considerable amount of muscle mass, but am still ambulatory. I won’t go into other problems with weakness, but there are plenty. What I want to emphasize is the importance of a primary physician’s absolute training to recognize myositis symptoms early. It’s not that difficult, and modern tests can point doctors in the right direction to make a correct diagnosis much sooner.
Now, the ongoing question is, what causes myopathies? I don’t know, but I’ll say this, I never had this problem until I started taking statins for elevated cholesterol. I can’t prove it, but I’ll always believe that was the cause. Best wishes on your journey with polymyositis.
I just got a pre diagnosis of Polymyositis today. Something didn't feel right starting back in October 2021, slowly progressing through the months, but December is when I knew for sure it was more than not exercising. So, I went in as a walk-in patient, and my blood was drawn. They took 8 viles. My liver enzymes were very high, and my weakness was getting worse. My primary Dr advocated for me to get seen by a neurologist right away. I got seen within 2 weeks. I had my neurology appointment today and was told it may be Polymyositis. They want to start me on prednisone, but I'm really nervous about taking it. I do all herbal remedies for my diabetes. But, they're saying prednisone is the only treatment for this condition. I've read and experienced what prednisone can do through family members, so that's why I'm scared to take it. This is all new and stressful. I don't know what to do and expect.
@@jigi7592 all the best you are a warrior
So how do you manage it till now?any medications?
Thanks so much for sharing your story. I'm now dealing with what is suspected is Polymyositis. I'm "fortunate" in that my PCP listened to me when I saw her for extreme muscle weakness and decided to test me for muscle connectivity diseases. Once she received the results she immediately had me see a rheumatologist who has been pretty good at sending me for additional testing. Thanks again for sharing.
Also make sure they test you for “Limb Girdle “ as well cause a lot of ppl has been misdiagnosed with polymyositis if your not familiar with it please google it cause more of my symptoms were of limb gridle than the myositis so I’m getting the test done now
@@pcherry5.052 Hi there. Thanks for the feedback. Unfortunately, as a result of all the testing I went through, I was diagnosed with Breast Cancer. The Polymyositis was triggered as a result of the cancer which is not unusual. Thankfully, I had a great team of doctor's and once I went through several test as a process of elimination, the breast cancer was detected when I had a CT Scan & MRI. Once the Cancer was addressed, the polymyositis resolved itself. God Bless.
@@Daysha38 may the most high God continue to bless and heal u in his mighty name and I will say a prayer 🙏🏾🙏🏾🙏🏾for you.
I agree with her about how you cannot look at a person and tell what's going on inside? Also, the amount of pain he or she has? Including primary doctors need to listen more to the patients when they complaint. It's not always inside a person head. Great video.
Thank you for sharing your story!
I can relate to your story.
Thank you for sharing! I’m on my journey to be diagnosed, even though with all my symptoms I’ve determined that I have a type is myositis! It’s a debilitating nightmare!
Oh dear yes it is. I’ve had this fir 7 years. My life has changed. Gained lots if weight because of the prednisone. Have you tried the Imuron she talks about?
Im praying for you
My primary care physician was thee worst 🥴
same here. my urine looked strange and when i asked for a kidney function blood test he said "your kidneys are fine!" --i am in Stage 3 kidney failure
@@leaveittoleftymy urine is strange too, my MD says it’s best without colour
What was the name of the test that finally got you diagnosed? I've seen everybody & took all kinds of test & nothing, so frustrating.
I had muscle biopsy not sure of other peoples
I've been diagnosed with Myositis. I continue to have high CK levels it's like every where I go no one knows what I have or how to properly treat me. I've been in the hospital for last 3 months unable to sand from low spaces or comb my hair. Just little things of daliy living are hard for me. I want to get back home to take care of my children. I need help if anyone can help please respond to me. Thank you!
Hi. I also have myositis. My CK levels were really high at 15,000. With the ivig infusions I have been taking and fasting and eating healthier my levels have almost come back down to normal range
@@mikelanier4089 Have you used any other meds to help with it
Hello Dale...thanks for ur story I have polymyositis as well and I have been in a wheelchair for over 10 yrs..i have had tried so many medicines but none has really helped me..wwas in a high dosage of prednisone 60mg three times a day which only caused me to loose oxygen to my hip and now I have bone lost so I came off of it and was put on methotrexate and I did the IVIG drips for 2 yrs and nothing has changed I'm still in wheelchair no muscle strength lost and none gain what other medicine can I take that might hlp?#needinghelp
Try drinking celery juice every morning. 16 Oz a day for 28 days
@@zoniapatreece1324 what will the celery juice do?
Can we talk
@@pcherry5.052 I also diagnosed with polymiositis now some time I feel back pain and feel like my bones
@@holyquran8638 sorry to hur that I will pray that we all defeat this illness
Is the immuring an infusion type of medication?
yes
Any affected inclusion body myositis patuent can give their opinions and what mefications tgey❤️follo🤠