NOT Everything is..........

Discuss Tecfidera (BG-12, dimethyl fumarate) as an oral treatment for multiple sclerosis.

NOT Everything is..........

Postby Ladymac » Sun Jun 09, 2013 5:19 pm

One of the stories that a very lovely woman who has had MS for over 20 years really moved me into a different direction between the time I was "officially" diagnosed and now, over 7 years later.

We feel like the ground under our feet is shaking with symptoms and many looks or statements that maybe our "illness" is all in our Head. (Really? Come on....)

We feel like no one believes us, and maybe we have succumbed to hypercondria (I am sure no one has felt that or heard that before, yup.)

Then, I felt RELIEVED when after almost a year of testing and searching for answers to find out, wait for it.......wait.....IT WAS IN MY HEAD!!! Couldn't resist, had to make you smile.

Flash Forward, years and years later....I have to remind myself that NOT EVERYTHING IS MS! Oh geez. Some of it is because of MS, or I picked up a virus/bug/UTI, etc. that made my MS MAD (my MS has feelings). Just like when I do something dumb like go outside here in HOTLANTA (Atlanta) when with 80% humidity and heat in the 90's I don't hydrate enough and keep a hat on and don't over do, I can cause a "Pseudo" Exacerbation. I love that term. It's fancy for FAKE...no, it's not, but remove yourself from the situation get hydrated, cooler, I can make myself feel better.

I can catch a cold and take longer to get better. I stay away from crowds when the Flu is at Code Orange alert (whatever the 911 or flu is). I enjoy making my husband get a flu shot just for once he can get a damn shot...hee hee...but it is to protect me and my MS I say (He still believes in that one).

The meds over the years, the trials and tribulations of life and genetics, my lack of discipline in passing up a freshly baked brownie without insisting on icecream making my cholesterol crazy....Those things aren't my MS, and have their consequences.

So, MS Pals, we plan. We must. In advance of a new Drug, or a trip, or anything that we need to be mindful to be careful. But, let's not forget, if things get out of whack with our bodies, we can go down the checklist in our minds and remember that perhaps it isn't MS, or perhaps it is the new Medication or Not. We need to learn that perhaps we need help sorting through what is going on, and maybe, just maybe it isn't what we thought it was and we can make some adjustment in diet, timing, other medications, rest, planning or get over something else that's going on. But, let's ask the right experts. The Local ER unless there is an MS Center there, have absolutely no idea most of the time of what to do about me because I have MS (Honest I have been told that) let alone the real deal on the new Med.

Like my WISE "older" dear friend said to me, why are you listening to your Hygenist's Daughter's Veternarian and not calling and talking to the direct source for the answer (my doctor)? Yep....she had me at the word WHY...

Coz, well, yup, I have to say it....NOT EVERYTHING is....

Blessings,
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
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Re: NOT Everything is..........

Postby CaliReader » Sun Jun 09, 2013 7:36 pm

Hi Lady,

You've been diagnosed with this disease a lot longer than I have. I expect you have a lot of practical wisdom to contribute on
coping with all this.

I can only speak for myself, but I follow this board because I want my doctor's information and advice and I want to know
what else might be available that my doctor might forget to mention.

MS is incurable. It can be slowed down (often) but not stopped with ordinary and usual medical treatment.

That changes the calculus for decision making. When the doctor can't offer complete help, and the disease is bad, I want to
know what else is available. I will take everything the doctor can offer, but at the end of the day I'm not going to limit
my treatment to something that they admit is not fully effective. That's just me. But I come here partly to get the
alternative perspective.
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Re: NOT Everything is..........

Postby Ladymac » Mon Jun 10, 2013 2:20 pm

Felicia,

You are absolutely correct. My Post here was to point out the obvious, not everything is MS. The calculus of the decision making always ends up that the Primary Decision Maker is US. Your quest of information is what I do myself. I just make sure that I don't get too far off the beaten path so that I do something that messes up the regimine that I agreed to try. I found joining an MS Support Group very helpful too. The more years that go by with living with MS, we all get a little more easy about reading and researching but with caution in putting anything into our bodies from sources that may make claims that can actually hurt us.

I agree that it is tough having to be the coordinator of information from several places. My post was re-iterating a story from a now 73 yr old Woman with Secondary Progressive MS who during her healthier and younger years sat on the MS Society Board, did research and has run several MS Consortium's and Support Groups over the years. Her lessons to me are very valid. We both have experienced the full gammit of emotions and roller coaster over the years that I referred to in the Pause before leaping to conclusions if something was happening it could be MS or Something else and to learn to live our lives the best we could and not be as jumpy as we were in the beginning of the diagnosis looking for things and not enjoying our lives.

Be Well and Blessings,


Hopefully during our lives a cure can be found.
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
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Re: NOT Everything is..........

Postby Markd » Mon Jun 10, 2013 7:42 pm

Brownie with ice cream......are my desires a symptom or something else, go with non-fat ice cream, orange sherbet is good too............think I'll waddle on down to the[size=50] ice cream counter[/size]
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Re: NOT Everything is..........

Postby Ladymac » Tue Jun 11, 2013 10:08 am

Markd wrote:Brownie with ice cream......are my desires a symptom or something else, go with non-fat ice cream, orange sherbet is good too............think I'll waddle on down to the[size=50] ice cream counter[/size]


:lol:
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
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Posts: 128
Joined: Thu Jun 06, 2013 7:00 am

Re: NOT Everything is..........

Postby annemc1 » Wed Jun 12, 2013 11:21 am

Thanks Ladymac! I needed that!
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