New to site (and mc)

MamaFill · Post by **MamaFill** » Tue Jul 17, 2018 3:04 pm

Hello all. I've never joined a forum before so please forgive me in advance for my ignorance :)

I found this site today and am very happy I did but I am overwhelmed by all the info and not sure where to start. I was diagnosed December 2017 with mc and get literally no information from my GI. Mine doesn't sound nearly as bad as what I've read on here but I am currently on Entocort (almost weaned off after 2 months) and don't want to ever take it again. I have had horrible side effects. Anyway, I would appreciate any advice as to where to start first on this very informative site. Thank you!

Gabes-Apg · Post by **Gabes-Apg** » Tue Jul 17, 2018 3:58 pm

Welcome.

Some good places to start reading,

- guidelines to recovery section, this has suggested eating plan, information on key supplements, other medication options.
- member success stories area, to see what others have done, what worked, what didn't, how long it took.
- read through the discussions on main message board, especially those aimed at new people,

Most of all breath, relax. Feel assurance that you have come to a place that can help you get well.
Be prepared, there is no quick fix BUT there are good options for long term wellness.

Hope this helps.
Happy healing

Post by **tex** » Tue Jul 17, 2018 4:19 pm

Hi MamaFill,

I can't add anything to what Gabes suggested, but I wanted to welcome you to the group. I hope you can find some solutions here that will work for you.

Again, welcome aboard, and please feel free to ask anything.

Tex

LauraAnn · Post by **LauraAnn** » Tue Jul 17, 2018 4:52 pm

Hello there! My suggestion to add is to buy the book that you can see in the upper right corner. It has been my “go to” help when I can’t even figure out what my question is. That happened a lot with the brain fog that comes with this mc. I still reread stuff in it on a regular basis.

Welcome, you have come to right place for support and answers.

Marcia K · Post by **Marcia K** » Tue Jul 17, 2018 5:54 pm

Hi, MamaFill. Welcome to our internet family. I don't have anything to add but you have found the best group around to help you on your journey to wellness. Your GI doesn't know much about this illness but your friends on here will help you figure out what works for you.

Erica P-G · Post by **Erica P-G** » Tue Jul 17, 2018 5:57 pm

Hello, an Welcome

A good area of information is on the Main Message Board at the top called "Sticky Topics" there is lots of informative help along with the great areas that Gabes suggests also.

Cheers
Erica

MamaFill · Post by **MamaFill** » Tue Jul 17, 2018 6:40 pm

Thank you so much everyone - I really appreciate the welcome and advice. I did read through some of the recovery section and I've decided to start by eliminating gluten. I am also going to order a magnesium supplement that my neurologist actually recommended for my migraines. I will also start some of the other supplements recommended here. I'm going to wait on the book because we will be moving out of state fairly soon and I don't want to lose it.

I know y'all are going to laugh at this, but I have no idea why the Canadian flag showed up on my profile. I'm in Texas!

Erica P-G · Post by **Erica P-G** » Tue Jul 17, 2018 6:46 pm

Lol....oh my - about the flag

Also be sure your neurologist is prescribing anything other than Oxide.....most use Glycinate recommended on this forum

You’re very welcome!

Gabes-Apg · Post by **Gabes-Apg** » Tue Jul 17, 2018 8:33 pm

The flag is linked to IP address.

MamaFill · Post by **MamaFill** » Tue Jul 17, 2018 10:36 pm

Darn - the magnesium supplement is citrate and oxide. It's a combination formula called Migrelief. I guess I will try taking the ingredients separately. Thanks for the heads up Erica.

Post by **tex** » Wed Jul 18, 2018 7:15 am

Yes, most of us cannot tolerate citric acid while we're still reacting. And magnesium oxide is primarily a cheap laxative. Humans can only absorb about 2 to 3 % of it into their bloodstream, making it pretty much useless as a magnesium supplement. One would think that doctors would know this, but apparently they are taught incorrectly in med school because virtually all physicians make that (dumb, IMO) mistake.

Tex

jlbattin · Post by **jlbattin** » Wed Jul 18, 2018 8:41 am

Welcome! I might add that you mentioned that you are almost weaned off of Entecort/Budesonide after two months. That's pretty quick, so be sure that you come off of it slowly or you'll have a major setback. Take one table every couple of days or three days and so on for awhile because if you come off of it too quickly, many get their symptoms returning again.

Do lots of reading on here. It is overwhelming, but becomes a lifestyle after while.

Again, welcome, and ask whatever questions come to mind.

MamaFill · Post by **MamaFill** » Wed Jul 18, 2018 12:05 pm

Thanks for the info everyone.
Jari - I took 3 pills/day for 6 weeks, 2 pills for 1 week and now I'm on 1 pill for a week. I honestly don't think I can take this stuff any longer. Among other things, it raised my blood pressure dramatically (it was under control with medication) and brought back my daily vascular migraines. I'm not sure if those were from the steroid or my blood pressure but headaches are a side effect of entocort. I'm a bit worried because after reading some posts on here, I'm not sure I'm in remission. The entocort immediately stopped the diarrhea and nausea but not the bloating/gas and I've been constipated since. I thought those were side effects but now I'm unsure.

And thanks, Tex. I'm going to get the ingredients separately so I can avoid the citrate/oxide. On a side note - are you handling this heat ok?

Im going to go ahead and get the book. I don't want to wait. I am also thinking about the lab testing. (I did test negative for celiacs). Interesting tidbit - my GI said the blood test is only 75% accurate.

I think dairy might be the easiest thing for me to cut so I'm going to do that and work on gluten and also the magnesium. Is this a good place to start?

I can't tell y'all how much I appreciate you!

Erica P-G · Post by **Erica P-G** » Wed Jul 18, 2018 12:38 pm

Hi Mamafill,

A resounding Yes on the Magnesium Glycinate (and lots of it externally right now doesn't hurt so Remag or Lifeflo are two good options for that). Magnesium takes a bit bite out of the migraines, as soon as I got my VitD and Magnesium levels up in my body my migraines really diminished, I hardly get them, and if I begin to I know I am low in magnesium so I will apply it to my face and temples often during the day and that seems to really help. I currently take 5000iu VitD and anywhere from 400-500 mg Magnesium Glycinate a day (sometimes the magnesium is external). My VitD levels are around 83.

Yes, also on the removal of Gluten and Dairy (dairy really gave me stomach pain, gas and bloating) You'll notice once you start taking the right amounts of VitD and getting good Magnesium and removing the Gluten and Dairy other bodily things will start improving in a relatively fast manner.

I can't advise on the Entocort but if you can stretch this last week you may want to do that....a side note to entocort is when you become constipated to back off the amount you are taking until you are not constipated and keep taking it and spreading it out gradually over time as you can until at least 4-6 months have gone by....I am crossing my fingers you don't relapse.

Cheers
Erica

MamaFill · Post by **MamaFill** » Wed Jul 18, 2018 1:34 pm

Thanks so much Erica. Did entocort affect your migraines? This is my first headache free day in about 2 weeks. I was focusing on getting that steroid out of my system as fast as I could but I'm going to take your advice and stretch it out. I didn't take it today.

Also, do you take the magnesium both internally and externally? Is that something I should do?