#108 IB Myositis - My IBM Early Years

[aungthein]

Hi Jerry, good day . Thank you for saying that we are your MEDICINE, likewise, the feeling is mutual . Your journey have started in 2005 and mine in 2020/21 . My wife and I am keeping your IB Myositis series like an ENCLOPEDIA, which benefiting us immensely . METTA . ( May you all be as strong as possible, healthy and PEACEFUL)

[jctomasevic]

Thanks so much for making this video! I was just diagnosed around Thanksgiving this year! 🎉Prayers for you and appreciate the channel, I'll be watching!

[dawsondahl]

Thank you for this video. It is helpful to understand the disease, how it affects people, and some of the things a family member & caregiver can expect in the early stages and things to do to support our loved one. Thank you!

[Cristina-SavedByGrace]

Thank you for sharing your story and spreading awareness.

[dontuckerjr]

The diary is a great idea. I've been diagnosed with just myositis at the moment. I'm not sure if there's a point to getting the biopsy if there are no treatment plans. Right now I'm taking a low dose methotrexate which helps with the feeling that my legs are melting. Anyway, a diary might be helpful for me to share later on if I find out a more specific diagnosis. I'm still in a denial, mildly depressive state. I'm exercising, but fear going out walking. I've only fallen one time, but was surprised at how I went straight down with no hope of slowing my fall. As a young man I was really into body building and weight lifting. Now I feel like someone implanted kryptonite in my body. Thank you for the videos. They are helpful.

[efstorms]

Thank you for making these videos. My father has IBM and these videos help me better understand what all is going on with him. God bless and hang in there.

[outofround]

I've tentativly been diagnosed with Poly-myositis after being on atorvastatin for over a year. My CK took off at 5975. But I'm finally getting a muscle biopsy after 5 months. Got a new doctor who really cares about me. I seem to have plateaued out. Not getting any worse. On prednisone now 30 mg a day. Trying to beat this thing!

[whetselphysiotherapy]

Thank you for sharing your journey here Jerry. Have you by any chance researched foundational cellular medicine and clinical level cellular detoxification to target DNA methylation and repair to reverse autoimmunity?

[douglasdunbar]

I have suffered from ibm for ten years the loss of muscle power is subtle but on going it took three years to get my diagnoses and it took three consultants brainpower I am now consigned to a wheelchair and the fine movement of writing is now impossible my grip too weak it is the case of down the slippery slope in slow motion one cannot compare today with say one year ago but only when one compares today with say five years ago is one able to measure the loss of muscle power I am eighty six years old and have been told that I’ve had a good innings I replied that I was still at the crease and batting albeit with less spectacular boundaries I have researched ibm and there is a case of a woman being cured in New Zealand by adopting the keto diet space precludes me from enlarging this case here but it was published in about 2019
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[joeljumps]

Hi Jerry,

When you first had symptoms, did you only feel weakness in the muscles? Did you feel any other sensations like burning or something like your muscles were being attacked and it felt really uncomfortable or kept you awake at night?

Also, was it just your quadriceps and the shin muscles affected in your legs? Did it affect your calf muscles and your glutes? Did it affect your outer forearms - the flexor carpi radialis? That’s the forearm muscle on the outside away from your stomach.