Progress Update: LOMA LINDA!

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Finally! I received my referral to Loma Lina University Medical Center where I will be seeing an actual MS SPECIALIST! I of course am on a waiting list and it could be months before I get in but the paperwork is here and that’s what matters! I’m excited to get the opinion and consultation of an actual specialist opposed to a general neurologist who is just following the routine course of treatment. It will be interesting to see whether or not he thinks I am or have been on the right track so far and it will be interesting to see what he has to say of my neurologist’s treatment so far along with her lack of interest in anything besides a pill helping my health.

Since it will still be some time before I can see the specialist I am going to be changing my neurologist back at Kaiser because at this point I really couldn’t get anyone worse… I just need someone who can monitor me and make sure I’m doing ok, getting the meds I need, etc.

I’m currently trying to get off the Prednisone I have been on for 7 months. I want to see how my body does on virtually NO medication with the exception of my Copaxone injections. I am tapering from 50mg at about 5mg a week right now so by the end of next month I should be done. I’m hoping my health will maintain so I can stay off the steroids for a while and use them when I really need them because right now it seems as though my body has built a bit of a tolerance to them so they are not combating my relapses as powerfully as they did the first time around.

Speaking of relapses, my symptoms aren’t doing too bad right now, I just can’t really tell what’s going on with them. I don’t know if they are getting better, worse, or staying the same. For a couple of days the pins and needles went away in my left hand but today I am feeling them faintly return. The fine motor control in that hand had got a bit better as well but got worse as the pins and needles returned. My vision has slightly come and gone over the course of the week but not too bad, just enough to slightly notice. Balance has been going in and out but never back to 100% like my first “remission period”, just been getting slightly better but then out of nowhere I will bump into a wall or something… My sensitivity to cold has been pretty bad but that symptom has been consistent throughout my entire MS experience so far. Cognitively I was doing pretty well for a while but yesterday I believe it was, it got pretty bad again. I had also been dealing with some pretty bad insomnia for a few days but the last 2 nights I have slept pretty well so hopefully that was just a random symptom.

Anyways, I am really trying to eat good right now and get lots of rest so hopefully Ill see some changes in the next week or so. I have been keeping a daily journal of all my symptoms and what I have had to eat so I will be reviewing that thoroughly at the end of next week to see if I can notice any changes in relation to my diet. We shall see!

2 Responses to Progress Update: LOMA LINDA!

  1. Draven7 says:

    I highly recommend Ann Boroch's MS diet book, if you haven't read it already. Boroch has some video on Youtube. I bought the book in 2007 and didn't follow the diet until 2 years ago. It's very strict and has been very beneficial to me. MS has given me a lot of allergies and cause my symptoms to get worse when I eat the wrong foods. I've been gluten-free for practically more than a year also. When I maintain my diet, I'm stable.
    If you still haven't tried LDN, I think you should. There's a lot of information on the internet about it. You'll hardly find anything on it in MS periodicals. The drug companies pay for these and the information is kept out.
    I can't say when I had my last relapse. I don't really have much in the way of flare-ups either.
    I think the Copaxone is helping me too. Good luck to you, Matt!

  2. Matt Allen G says:

    I'll check out the book, I have been avoiding gluten as well as many other "common food allergens" but it honestly is starting to seem like I may not personally be as sensitive to many of these foods so far but I definitely don't do junk foods, soda, and sugars anymore because either way I just FEEL way better without them.

    I also had heard of LDN but I have still yet to research it in depth.

    Thanks for the advice though! I have lots of research to do!

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