August 30, 2017 at 11:20 pm
OMG this is ridiculous. I’m an author so if you’re comfortable you can contact me through my website.
http://Www.houseofphoenyx.comAugust 30, 2017 at 11:08 pm
I’m not part of any groups except for this one because this is all new to me. I’ll search FB and hopefully reach you soon.
For the people who have set up this website you may take a lesson from the Health Unlocked Pernicious Anemia website. You can get in with your own password and message people privately just sayin. And it’s just overall more user friendly:) No disrespect.August 28, 2017 at 7:49 pm
Also I’m curious to know how you’re doing and if you could pick between your Denver doctors and going to one of the specialists listed on this website who you would choose? I’ve been reading first treatment is key so I don’t want to mess it up.August 28, 2017 at 7:25 pm
I just got diagnosed by a neurologist at PSL named Dr. Feldman. I have made an appointment with a hematologist at PSL named Dr Nash who I’ve heard very good things about. I was originally supposed to see Dr Wolff at Porter which is my primary hospital but his staff was so rude that I transferred my referral to PSL. Now I’m going to get a second opinion from Dr Antilone in his practice but at the Lonetree location because I can’t deal with those ladies at the front desk at Porter. My protein came back normal so not sure what treatment I will be receiving yet. I haven’t started PT for CIDP although I have done PT for other related stuff pre diagnosis at that was at Porter with Carissa who is wonderful. I have my Dr Antilone appointment Thursday then my Dr Feldman and Dr Nash the Tuesday after Labor Day so hopefully I’ll know more then. If there’s anyone or anything else you recommend please let me know. I’m a proactive person and a Denver native so traveling around Colorado isn’t an issue for me. Thank you for your reply.August 28, 2017 at 4:29 pm
I was recently diagnosed with CIDP and live in Denver as well. Did you ever find a local CIDP specialist?August 13, 2017 at 7:24 pm
Oh wait… found CSF total protein. It came back at 45 which I guess is the cut off of the normal range. Hoping the high lymphocytes will get insurance to pay for IVIg.August 13, 2017 at 7:02 pm
The spinal tap was fine. Not a big deal. My tests came back. There were several so I’m not sure what exactly I’m looking for. Everything was normal but lymphocytes was high and monocytes was low. What does that mean? Is lymphocytes the “protein” everyone is talking about that has to be high in the CSF?August 10, 2017 at 3:23 pm
Yep, getting a spinal test tomorrow. Really looking forward to it…yes, that’s sarcasm.August 10, 2017 at 10:35 am
I know it’s been years but I’m wondering what ever happened? Was it a B12 deficiency or CIDP? I’m in the same boat now except I’m deficient in all B vitamins. The pernicious anemia forum I’m part of reports neurological muscle issues get worse before they get better once you start B12 doses. Mine did. So much that I was diagnosed with CIDP.August 9, 2017 at 6:50 pm
Have you checked your B-vitamins? Could be that a deficiency is responsible for at least some of your problems. If you haven’t also throw on a vitamin D test.August 9, 2017 at 6:28 pm
I just wondering if anyone else has migraines/headaches that seem to come on later on in the day? It’s almost as if my body gets more tired as the day goes on and my headaches start.August 9, 2017 at 6:15 pm
Thank you all for your replies. I am working with a functional nutritionist as well and I plan on getting a second and third opinion about the CIDP. It’s not that I don’t believe I have CIDP, it’s just that it all of the sudden came about in the middle of a B-complex deficiency. I find the timing strange especially since a B12 complex can cause many of the same symptoms. And again the myelin sheath is made up of B vitamins which my system can’t absorb through natural processes. If it is (or at least some of what I’m feeling) is CIDP then from what I have been reading it seems that I caught it in the early stages so that’s good. It looks like the earlier you get diagnosed the better change you have of remission with IVIg.
Anyway, thank you for welcoming me to the family. I appreciate all of you! And I guess maybe all of us should be thankful that CIDP is a treatable disease.August 8, 2017 at 1:44 pm
Thank you JK! I went ahead and ordered some compression socks anyway–I figure they can’t make anything worse. I’m praying that my protein comes back high so I can start the treatments. My neurologist told me my treatments would be home based so that’s good. It is my understanding that with treatment (should it work and I’m hopeful that it will) that my symptoms will never get worse then they are now, but will get better. Is that true from your experience?August 8, 2017 at 1:35 pm
***Autocorrect changed undiagnosed to diagnosed so where B12 is concerned I have yet to find why I’m deficient in it and all other B vitamins. Also for he record I don’t drink and never have.***