Follow my CIDP recovery on youtube and facebook!
AnonymousJanuary 8, 2014 at 11:40 pm
Hey! So I was a 19 year old collegiate athlete when CIDP struck me out of nowhere. I started showing symptoms 1/1/11, got wrongly diagnosed with GBS on 1/25/12, got correctly diagnosed with CIDP on 6/19/12 and started improving from IVIG and prednisone on 8/14/12. And in July of 2013 I made a youtube channel because I know that I had lots of questions when I first got CIDP and didn’t know where to look so I wanted to be the one to make youtube videos for other people who felt the same way. I just want to help and be there for people. So check out my youtube channel! I post physical recovery update videos every few months, I talk about veganism and raw veganism and how it’s helped my recovery dramatically and soon I’ll be posting healthy recipe videos and tons of other fun stuff so stay tuned! My channel is http://www.youtube.com/user/BattlingCIDP
I also have a facebook page that I actually post to even more often; same types of things though.
I also have a skype account and if anyone has any questions that they want to ask me about recovery or just CIDP in general, feel more than welcome to add me and we’ll set up a time to talk, I’m here for YOU! Just send a personal message to my facebook page listed above ^^^
My skype account name is battlingcidp
Well good luck with everything my fellow GBS/CIDPers!
January 9, 2014 at 4:17 am
Craig, you seem to be a CIDPer like many of us here and I don’t think you are in competition with the kitchen cabinet-showroom guy. So why post the same threads multiple times?
Ви розмовляєте російські?
Do you follow Dr Shaoulian’s advice for CIDP (he is on the opposite coast from you)? He had some training from Dr Engel who I unsuccessfully tried to get in to see.
Sounds like the vegan diet is working for you. Other members have reported success with it too. I cannot get into that for myself.
I hope you DO get back into sports, even if not at the same level as before. I miss all the physical stuff I used to be able to do. I was a semi-professional tennis player before CIDP (and in my youth), now I only hit volleys from my wheelchair. I hope you get back on the cross-country footpaths running fast and hard again!
AnonymousJanuary 13, 2014 at 5:53 am
Mainly because it’s easy to just copy and paste and I really just want to let people know that you can either heal completely (if caught early enough) or at the very least help alleviate symptoms. I wish someone else told me about this earlier, so I’m letting others know.
I’ve actually never heard of Dr. Saoulian or Dr. Engel, could you tell me where I could find out more about him?
If you want any help going vegan you now know how to get ahold of me and I would be more than happy to help if you wanted to experiment with it.
And thank you so much for the support! If you keep in contact with my youtube channel hopefully you’ll see me running soon! I just want to give fellow CIDPers hope so spread the word!
January 13, 2014 at 11:18 pm
I ran across a website that looked like you may have been posting to:
The website contains videos from Dr Shaoulian under the name NerveMDorg. I apologize for any confusion if you are not involved with this website.
If you haven’t already done so, you might consider posting your story at the CIDP Survivors website here:
I wish you the best of health and hope you get back into cross-country soon!
AnonymousJanuary 15, 2014 at 2:04 am
Haha no I’ve never heard of that website, especially since I don’t speak Russian :p But I’ll check it out a little more.
And thanks for the livingwithcidp.org site, I will definitely look at that site more and thanks for the well wishes!
Actually here is my latest video if you’re interested.
January 15, 2014 at 3:43 am
Congratulations! I can’t go that fast in my power wheelchair.
AnonymousJanuary 16, 2014 at 2:15 am
candr3, you’ve already seen my V-Blogs, but I figure I may as well put a link on this thread too. https://www.youtube.com/watch?v=Mw69Q98yNFs
AnonymousApril 19, 2014 at 1:43 pm
wow… craig I just watched one of your videos on youtube and I cant tell u how uplifting it was…. I am in my 50s diagnosed with cidp about 9 years ago… was doing ok until now… quick onset of debilitating symptoms… very depressed and feeling totally hopeless.. after watching your video and hearing your story, I am feeling hopeful again; ready to fight back and keep the monster at bay… im going back on more frequent ivig treatment and getting a new neurologist… between that and following your advice on determining YOUR OWN PROGNOSIS, I feel like I might be able to have a decent life again…. thanks steven
AnonymousApril 19, 2014 at 2:46 pm
Thank you Steven! It’s comments like these that keep me making videos and keep me doing what I’m doing. You should think about making a CIDP youtube channel, think of all the people you could help with your story! And hey be sure to find my Battling CIDP Facebook page where I post things daily to keep everyone motivated! https://www.facebook.com/BattlingCIDP
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