Intro

[PatMAZ]

Newbie here. First time I've ever posted anything ANYWHERE, although I have followed posts here and there for a while. I wish I knew how to post a pic. sorry. Not a Luddite but I haven't kept up with the tech though I use it a lot. I mostly comment on other people's posts on Facebook, since I don't have a smart phone, just a smart mouth. I will be surprised if anyone gets back to me at all, so we'll see what happens.

[jimeka]

Hi Pat, do you have ms, if so tell us about yourself, sometimes having a smart mouth can be beneficial, helps you be heard. Cheers Jimeka

[johnMSAA Partner]

Welcome, newbie aka PatMAZ ! Glad you decided on our My MSAA Community as the first time you've posted on a forum such as this!

Pictures aren't necessary, and only share what you are comfortable with divulging (great advice from jimeka , btw!). But just know that everyone on MMC here has been open and respectful of one another - and we aim to keep it that way!

- John, MSAA

[PatMAZ in reply to johnMSAA]

Thanks John, I noticed that respect when I read over some older posts. Maybe that's what made me comfortable posting here. Anyhow, to answer Jimeka.

I started getting symptoms in 1988 but it took 2 years to diagnose my MS so I guess I'm only a blog newbie. I never have had what a doc would call an exacerbation (I guess) as I've always been able to keep working. I was actually working a f/t and a p/t job when the dx came. I went to support groups off and on over the years, mostly off as everyone else seemed worse off than I was. I was in pain, depression, anxiety and discomfort more than anything and went from Neurontin to Zoloft to ? as time went on and every time my neuro asked if I wanted to file for disability after listening to my whining and moaning I would laugh. I really didn't see it happening, I really thought I'd make it all the way to 65.

In 2005 I had just started taking Avonex and was not enjoying the anxiety it was adding (being injectable) but I was doing it and then I was crossing the street 1 lunch hour and ending up on a gurney in the ER. That's the best way to describe this stupid car accident that knocked me out for almost 18 months and changed things forever. My injuries were not that bad but thinking back now my recovery was so affected by the MS that it has not been 100% and never will be.

I should add that I still don't know how it happened as I am not a small person and it was July @ noon in broad daylight, but that's why they call them accidents. Anyhow I had good insurance and good lawyers and since I am still here I'm lucky I guess. It did make me look @ things differently and that brings me to now.

I moved 'cross country in 2008 and of course the recession hit and I have had trouble since then as most of us have, w/jobs being scarce etc. I was having these major stomach pains that lasted more than a year and I thought it was MS of course. Come to find out in 2014 that it's a combo of IBS, diverticulosis, and (not) my favorite, Celiac disease. And that's kind of where I crashed.

I think I've come to terms (if any of us can) w/my MS but the celiac is making me crazy. I feel like it's the last straw and I know that's way out of proportion. I'm single, I have friends, and 2 screwy cats, but no major vices and now to find @ this age that I have to read every label and watch every thing I eat, and give up favorite restaurants (mostly fast food) seems like the universe is royally ganging up on me.

I know this is ridiculous in the long scheme of things, and especially in the US in this election year, but I am taking this celiac disease really badly and that's where I am today.

Aren't you sorry you asked ? lol, Pat

[SepFromWisco in reply to PatMAZ]

Do you follow any specific diets such as the Autoimmune Protocol or Paleolithic Diet for your Celiac/IBS? Ive heard these are extremely beneficial for most with these conditions

[PatMAZ in reply to SepFromWisco]

I don't follow any specific diet. For the last year or so it's been closer to when I have $$ I eat. Meaning I'm having trouble paying the bills in general. And I go to 2 food pantries in the neighborhood every month, but they can't really cater to dietary needs so much. I've found that I can eat something with gluten every week or so, but not go nuts with it. I.e., there was a church meeting a week ago Sunday and they had pizza as a motivation to draw people. Real pepperoni and regular pizza. I scarfed down 3 slices of pepperoni while I was there. Didn't seem to bother me, so I must have had a good week. Most of the time I'm only eating 1 meal a day with a lot of water or tea. I wouldn't recommend it, but it's all I can do right now.

[Juliew19673]

Hi Pat - welcome to the "Club" no one wants to be part of, but am glad you are here and vocal now!!

[PatMAZ in reply to Juliew19673]

Hey thanks for the welcome! I agree, no one wants to be part of this club but here we are. Since I posted an annoying new development has happened. My neuro doesn't want to give me Gilenya anymore. He says (true I think) that since I now have moved into Sencondary Progressive stage (from RRMS) there are no drugs recommended for this stage. Therefore, insurance won't pay, so he won't prescribe. He wants me to get a 2nd opinion and I'm waiting for my PCP to come up with a referral. What a headache ! How are you doing/what's your story ?

[RoseySawyer]

Hi and Welcome! 😊❤🌷

[PatMAZ in reply to RoseySawyer]

Thanks, nice to hear from you. What's your story ?

[RoseySawyer in reply to PatMAZ]

RRMS. Diagnosed October 29, 2015. I was paralyzed November 10, 2015. Came out the hospital walking with a one point cane on January 12, 2016. I'm on Rituxan infusions now and still walking. 😊❤🌷