Longtime MSer but new to this forum

New members should feel free to introduce themselves here

Longtime MSer but new to this forum

Postby grp333jsj » Sun Feb 24, 2013 6:22 pm

Hello,
This is my first time on a support site ever. I have had the label of MS for 30+ years and have had my share of ups and downs. Have been on Betaseron twice and Copaxone once. Both left me with severe Leukopenia (low white count) so I have not been a candidate for any of the DMDs
Have been secondary progressive for the past 4 years with minimal issues...I am very lucky and blessed.
In Sept. I had a bad fall on my chest which now I understand had to do with fatigue, vision/vertigo and balance issues that I avoided and convinced myself I was just doing too much and was tired.
Then the downward spiral began...Diplopia, vertigo, numbness fatigue UTI Breathing issues, left foot drop and too many things to list.
I took IV steroids for 3 days and went through a bit of craziness with that xoxo It did help resolve the double vision and for that I am grateful. Other symptoms seem to be appearing and the previous ones not resolving fully yet.
I was introduced to the Wheldon Protocol from a friend who is also on this site but am not having luck with finding a doctor in my area who will assist me. In reading past posts on this site I noticed someone from the Albany, NY area on the protocol and hope to make contact to see if she could recommend me to her doctor? I believe her name is Jen? If anyone has any info I would appreciate it as I am being pressured by my neuro and pcp to get on Gilenya even though I am not a candidate for many reasons! I am being told that my brain is deteriorating and if I do not start treatment soon I will be in a wheel chair! I really dislike when they use Fear! With the brain fog and cognitive issues I am having I do not have the energy to deal confidently with my docs. Looking for someone new to be on my team. Thanks for any input or assistance anyone has. I do have all the info on the CAP/Wheldon Protocol and have been doing my research and the protocol makes a lot of sense to me with my history of Asthma and recent Upper resp. infections and longstanding UTI's. It seems logical to at least give this treatment a try yet I am not finding any medical professionals that are on board with the protocol. If anyone has information that might help me find someone for support in my area I would be grateful.
Thanks for listening xoox
Genell
grp333jsj
Newbie
 
Posts: 5
Joined: Sun Feb 24, 2013 11:44 am

Advertisement

Re: Longtime MSer but new to this forum

Postby jimmylegs » Mon Feb 25, 2013 6:25 pm

welcome to the forum g, lots of people here to provide support.

if you ever decide to investigate nutrition, i can answer questions and point you to resources. there are well documented nutritional links to ms, asthma, and susceptibilty to infections.
jimmylegs
Volunteer Moderator
 
Posts: 8982
Joined: Sat Mar 11, 2006 4:00 pm

Re: Longtime MSer but new to this forum

Postby grp333jsj » Mon Feb 25, 2013 6:56 pm

:smile: Thank you very much for your message. I have been reading many of your informative posts and am definitely wanting to be consistent with my diet and nutrition. I tried Macrobiotics for a few months and felt great yet it was difficult for me to maintain when traveling. I know that is an excuse! I make green juice daily and am not a big meat eater as it is difficult for me to digest. I have severe constipation and food allergy issues since childhood. IBS... I have always been interested in finding a way to reduce inflammation throughout my system and was just reading one of your posts re: inflammatory foods as your reply came...love the synchronicity!
I had an appointment with my neuro today and he really wants me to get on a DMD soon (gilenya or Tysabri were his choices) I am resistant! He was not on board with the ABX protocol...he said it is a scam and that if it were working that everyone would be on it! I didn't have the energy to argue :( I appreciate any info or suggestions you would like to share.
I found myself standing in my local health food store with the supplement list for the Wheldon Protocol today thinking that what could it hurt to follow the supplements suggested? Well I was quickly overwhelmed and said well maybe I will just take the NAC and Sublingual B-12? hahaha...the brain fog set in big time and I realized I was in over my head and my wallet!!! The supplements each month sound like they would equal the cost of the DMD? Ugh ...there has to be an easier way..? I am aware everyones needs are different and I will ask to have my Vit. D levels checked and any other suggested tests you may think appropriate. I was also thinking of finding a naturopathic doctor to assist?
How long have you had the label of MS? How are you doing not being on Meds?
It is so nice to have a place like this forum to go to connect with people and to learn from shared wisdom and experience.
Many blessing and gratitude,
Genell
grp333jsj
Newbie
 
Posts: 5
Joined: Sun Feb 24, 2013 11:44 am

Re: Longtime MSer but new to this forum

Postby jimmylegs » Mon Feb 25, 2013 7:16 pm

no problem g :)
if you pick only one supplement, make it zinc. links to your low red meat intake, inflammation, infections, ms, allergies, IBS etc!
handily, zinc is also antibiotic :) (so is selenium, but that's another story)
my regimen thread has recommendations for tests and levels. naturopaths can be useful, but expensive and in my opinion sometimes they push unnecessary treatments on you.
can you link me up to the wheldon recommended supplement list? i might be able to help you prioritize and strategize for simplicity's sake.
i was dx'd in early 2006, early feb actually, after a crappy last week of january. so i'm 7 years in and doing amazing so far :D
glad you found us! take care and let me know if you have trouble finding any info
jimmylegs
Volunteer Moderator
 
Posts: 8982
Joined: Sat Mar 11, 2006 4:00 pm

Re: Longtime MSer but new to this forum

Postby grp333jsj » Mon Feb 25, 2013 7:45 pm

Thanks again for the great info! Very helpful! Had my hands on the zinc today and put it back xo. Will pick some up tomorrow . I have also had trouble with digesting or should I say tolerating supplements over the years. I have GERD also. Tried standard process years ago but felt sick from them? Maybe it was the price haha !
Regardless... Here is the link from the CPn Help site for suggested supplementation during ABX protocol.
Much appreciation
Genell
grp333jsj
Newbie
 
Posts: 5
Joined: Sun Feb 24, 2013 11:44 am

Re: Longtime MSer but new to this forum

Postby jimmylegs » Mon Feb 25, 2013 7:50 pm

ok cpn help. i will find it, think i've been there once before.

as for the zinc. when you go shopping tomo, find one that has 50mg zinc blended with 2-3mg copper. if not blended in one pill, it's okay to pick them up separately. individual copper pills typically come in 2 or 3mg sizes. you just don't want to drive copper levels down by supplementing zinc only.

good luck shopping!
jimmylegs
Volunteer Moderator
 
Posts: 8982
Joined: Sat Mar 11, 2006 4:00 pm

Re: Longtime MSer but new to this forum

Postby grp333jsj » Mon Feb 25, 2013 11:00 pm

http://www.CPn Help.org/publicimages/AllSupplements.pdf

So sorry! Thought I pasted this already!!!
Thanks again for the info!!!
Genell
grp333jsj
Newbie
 
Posts: 5
Joined: Sun Feb 24, 2013 11:44 am


Return to Introductions

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service