Do I know how to use my time off or what?

[Newbeeee™]

The incidence has been noted at about 1 in 100,000

So I drew the short straw on that one

Sorry to read this brother.
Hoping you can get control of this fast.

[Here's Johnny!]

Hey JP,

Just reading this, this is terrible news.

John

[JParis]

I'll tell you,  more than anything,  this has knocked me down a couple notches.

By and large what I'm dealing with physically is some weakness & soreness in my legs.  I wouldn't call it painful,  just sore.

I'm sure a lot of guys, like I have,  you go through life feeling pretty g'damn indestructible. Then something like this comes along and at its height,  brings you to a point where you can't dress yourself,  you struggle to do the simplest of tasks.  We take walking for granted.

Wake up one day and you can't. That will hit you in your core being.

There are some oral medications that are only somewhat effective in treating this particular form of Myositis. The IVIg in fusions are the firstline treatments now. 

They give you anti-bodies to try to take some load of of your own immune system which has started attacking and destroying particular muscle groups. Then the antibodies can take over protecting your body.

With any luck, over time my body will stop attacking itself.  That will put the Rhabdomyalosis into remission.  Then the Myositis can reduce the swelling within the muscle tissues.

Long-term  the prognosis is fairly upbeat that this can be put into remission. The reality though is some never really quite get there, though they can see a large reduction in symptoms.

For now it's eyes forward and one day at a time.

[beej]

I'll tell you,  more than anything,  this has knocked me down a couple notches.

By and large what I'm dealing with physically is some weakness & soreness in my legs.  I wouldn't call it painful,  just sore.

I'm sure a lot of guys, like I have,  you go through life feeling pretty g'damn indestructible. Then something like this comes along and at its height,  brings you to a point where you can't dress yourself,  you struggle to do the simplest of tasks.  We take walking for granted.

Wake up one day and you can't. That will hit you in your core being.

There are some oral medications that are only somewhat effective in treating this particular form of Myositis. The IVIg in fusions are the firstline treatments now. 

They give you anti-bodies to try to take some load of of your own immune system which has started attacking and destroying particular muscle groups. Then the antibodies can take over protecting your body.

With any luck, over time my body will stop attacking itself.  That will put the Rhabdomyalosis into remission.  Then the Myositis can reduce the swelling within the muscle tissues.

Long-term  the prognosis is fairly upbeat that this can be put into remission. The reality though is some never really quite get there, though they can see a large reduction in symptoms.

For now it's eyes forward and one day at a time.

I'm praying for you, John. I was just wondering yesterday how you were doing. I'm glad for the update.

[Shazam/TPP]

Sorry to hear this JP, hoping the treatments will help..

curious as to which statin you were on? still on?


I'm on Lipitor 80mg and wife is on Crestor 40mg, both are once a day..

[JParis]

Sorry to hear this JP, hoping the treatments will help..

curious as to which statin you were on? still on?


I'm on Lipitor 80mg and wife is on Crestor 40mg, both are once a day..

I was taking Lipitor...that said, it doesn't matter the brand, it's the statin period...there are naturally occuring statins in some foods as well.

[Newbeeee™]

John, please take this with all the good intentions that's meant.
Please look into a anti-parasitic protocol. After all, we're all just animals....
Many things and lots of inflammation is caused by it. Many things are mis-diagnosed but caused by it.
As I previously said, virtually everything I've looked into in the last 18 months points towards it.
Ginger, garlic, curcumin, mucho greens, zero sugar, plenty of water, sunlight, exercise - it's all easy to do and may help you.

[JParis]

John, please take this with all the good intentions that's meant.
Please look into a anti-parasitic protocol. After all, we're all just animals....
Many things and lots of inflammation is caused by it. Many things are mis-diagnosed but caused by it.
As I previously said, virtually everything I've looked into in the last 18 months points towards it.
Ginger, garlic, curcumin, mucho greens, zero sugar, plenty of water, sunlight, exercise - it's all easy to do and may help you.

Appreciated Terry.

After all the testing between x-rays, MRI, CAT Scans and many blood tests, then hooking up with a Dr that is considered a worldwide expert on Myopathy's, he knew immediately what it was....

I think for this issue that I am on the right road.

[JParis]

Well, today is Day #2 of my 5th infusion treatment cycle...so it's a "work from home" couple days for me

As each cycle has come & gone I have been seeing an extended number of days that I feel somewhat better. This last treatment had me feeling better for 19 days, after the 1st cycle, I only got about a week of feeling better before the decline started again....

I will complete my 6th cycle next month and then see the Neurologist again to determine if we stay the course of treatments or if other meds will be needed to get things under control.

One day at a time.