You commented on my video tonight - PINK PANTS - "Irish I were drunk!"
I've had symptoms of m.s. for 39 years. CCSVI dx July 2010. Treatment in Albany this week! Will then try to get dr. Rx for LDN.
Steroids should not be used with LDN - I was on them since June 2010 for an elbow injury - but now it has turned arthritic. (Left elbow can't straighten or bend without pain. Steroids will ruin your bones.
@ricebaglady I've just finished the steroids, so will have a little break before starting the LDN. Hadn't thought about a before LDN vid... might be a good idea!
@ThePennygirl You too Susan! I hope you are keeping well. Thanks for being part of the journey. Is there anywhere online where I can listen to you on the radio?
Hello Mary, I found your video very moving. I hope and pray your upcoming treatment nip the MS progression 'in the bud'. Best of luck -- will look forward to hearing more!
Bravo Mary on your first youtube video!! You did great :-) Sounds to me like you have a pretty open minded doctor and that is good. I can't wait to hear how the testing goes. So glad to have you an active member of the youtube MS Family.
@lovingfatalist You too Toby! Not used to 'meeting' people like this - but it's growing on me :) BTW, I was living in the UK when I was diagnosed - although I haven't been to Yorkshire.
Woohoo!!! Well done Mary - fantastic to see you've joined the club. It is nice to have some more Aussies sharing the journey - this is so important to help others who are just hearing about CCSVI and wondering what others are thinking. So wonderful you have found someone to test you and looking forward to hearing how you go. You may find you are covered privately - don't mention MS, just say it is a standard vein angioplasty. You should be alright. Love to hear patients teaching their docs! K
@kezzcass Thanks for the tip re health cover. Taking Jelinek's book into the GP made it so much easier - because it felt like the suggestions were coming from a professor not me. That said my GP was very open to ideas... I'm hoping the same about my neuro ... (nothing wrong with hoping!) M
Hello! Welcome to the family! You speak very articulately about what's going on for you - another Kerri maybe? Sorry to hear about your dramas, looking forward to seeing more updates esp on the LDN. GREAT book - I did his retreat earlier this year and it has truly been life changing. Btw - we stole him, he lives in Melbourne now hahaha :-)
@missalgernon Typical! All the good stuff ends up in Melbourne! I'll let you all know how the LDN goes - I'm quite intrigued by it - especially the documented ‘safety’… certainly the not all drugs for MS can say the same…
Hi Mary.... Very impressed at your 1st attempt, I am yet to try mine but will be posting a viseo over next few weeks as I begin my journey to CCSVI in Egypt!
All the very best of luck with your scans and do keep us updated
@Kanny989 Yeah - it's weird the whole youtube thing, but it suddenly feels VERY important for us all to share. All the best in Egypt, and good luck with your first vid;)
My ride to Albany never showed up! Medicaid is trying to arrange transportation with another company. Was supposed to be picked up 80 minutes ago.
4 hour ride - GIVE ME A PLANE TICKET!
YEAH right!
ricebaglady 1 year ago
@ricebaglady Oh no! It's now 15 hours later as I read this. I hope you are in Albany now!
PlumRed99 1 year ago
You commented on my video tonight - PINK PANTS - "Irish I were drunk!"
I've had symptoms of m.s. for 39 years. CCSVI dx July 2010. Treatment in Albany this week! Will then try to get dr. Rx for LDN.
Steroids should not be used with LDN - I was on them since June 2010 for an elbow injury - but now it has turned arthritic. (Left elbow can't straighten or bend without pain. Steroids will ruin your bones.
Do a pre LDN video?? hmmmm
ricebaglady 1 year ago
@ricebaglady I've just finished the steroids, so will have a little break before starting the LDN. Hadn't thought about a before LDN vid... might be a good idea!
and I love the pink pants!
PlumRed99 1 year ago
Wishing you all the best with your testing and with the LDN. I've taken it for 9 years, and I feel it's kept me fairly stable. ~Nancy
cowboystew 1 year ago
Nice to meet you Mary! susan
ThePennygirl 1 year ago
@ThePennygirl You too Susan! I hope you are keeping well. Thanks for being part of the journey. Is there anywhere online where I can listen to you on the radio?
PlumRed99 1 year ago
Hi Mary, great 1st video. Watch out it gets addictive. I think you'll like & do fine on the LDN.
damizia 1 year ago
@damizia Thank you & that's good to hear about LDN! Also, thank you so much for sharing your journey - I look forward to see you improve further :)
PlumRed99 1 year ago
Hello Mary, I found your video very moving. I hope and pray your upcoming treatment nip the MS progression 'in the bud'. Best of luck -- will look forward to hearing more!
enpsaphierable 1 year ago
@enpsaphierable Thank- you! I will keep you posted x
PlumRed99 1 year ago
Bravo Mary on your first youtube video!! You did great :-) Sounds to me like you have a pretty open minded doctor and that is good. I can't wait to hear how the testing goes. So glad to have you an active member of the youtube MS Family.
Hugs,
Andrea
MSVlogSupport 1 year ago
Hello, it's nice to 'meet' you, Toby :-)
lovingfatalist 1 year ago
@lovingfatalist You too Toby! Not used to 'meeting' people like this - but it's growing on me :) BTW, I was living in the UK when I was diagnosed - although I haven't been to Yorkshire.
PlumRed99 1 year ago
Woohoo!!! Well done Mary - fantastic to see you've joined the club. It is nice to have some more Aussies sharing the journey - this is so important to help others who are just hearing about CCSVI and wondering what others are thinking. So wonderful you have found someone to test you and looking forward to hearing how you go. You may find you are covered privately - don't mention MS, just say it is a standard vein angioplasty. You should be alright. Love to hear patients teaching their docs! K
kezzcass 1 year ago
@kezzcass Thanks for the tip re health cover. Taking Jelinek's book into the GP made it so much easier - because it felt like the suggestions were coming from a professor not me. That said my GP was very open to ideas... I'm hoping the same about my neuro ... (nothing wrong with hoping!) M
PlumRed99 1 year ago
Hello! Welcome to the family! You speak very articulately about what's going on for you - another Kerri maybe? Sorry to hear about your dramas, looking forward to seeing more updates esp on the LDN. GREAT book - I did his retreat earlier this year and it has truly been life changing. Btw - we stole him, he lives in Melbourne now hahaha :-)
missalgernon 1 year ago
@missalgernon Typical! All the good stuff ends up in Melbourne! I'll let you all know how the LDN goes - I'm quite intrigued by it - especially the documented ‘safety’… certainly the not all drugs for MS can say the same…
PlumRed99 1 year ago
Hi Mary.... Very impressed at your 1st attempt, I am yet to try mine but will be posting a viseo over next few weeks as I begin my journey to CCSVI in Egypt!
All the very best of luck with your scans and do keep us updated
Karen x
Kanny989 1 year ago
@Kanny989 Yeah - it's weird the whole youtube thing, but it suddenly feels VERY important for us all to share. All the best in Egypt, and good luck with your first vid;)
PlumRed99 1 year ago
Hello.
There you are.
I will sub you as soon as I type this.
Something I have never really talked about:
My mother has been treated for severe, painful varicose veins my whole life.
Just thought I would throw that out.
Keep posting and commenting and
WELCOME TO THE MS FAMILY!!! :) :)
Mark
irishbear76 1 year ago
@irishbear76 Thanks for the welcome Mark! I will indeed keep you posted!
PlumRed99 1 year ago