New member, new illness

For questions on how to support loved ones with MS.
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jw10216
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Joined: Fri Jan 27, 2017 7:56 pm

New member, new illness

Post by jw10216 » Fri Jan 27, 2017 8:50 pm

Hi there all,

I somehow stumbled upon this website today, and I am glad I did. It seems that you all have been a great support system for each other. Sometimes even having the best people supporting you doesn't help, because none of them will ever fully understand.

That being said, I was just diagnosed on 01/20/2017 (the day we gained a very "popular" new president, I might add). I am a female, Caucasian, and just shy of 26 years old. Go figure, the perfect candidate. :)

It all started around the 13th. I noticed my eye was kind of sore in the socket but I had been working on a very intense puzzle, and I assumed maybe I strained something. I know, what a nerd. I've got 20/15 vision, never been to an eye doctor in my life, and rarely go to any doctors at all. Boy did that change!

The soreness continued for a couple of days, but I didn't think anything of it. That Monday, I woke up to get ready for work and noticed that my left eye was pretty blurry. It was like I had been staring at a light, just a weird blob in the middle of it. Didn't link the two problems together for a couple of hours. I got to work and after talking to a few people I decided to go to an ophthalmologist. Luckily there was one down the road that had a free spot right away. I got there, did the paperwork, and a bunch of different tests later the lady decided to come out and say "I'm worried you might have multiple sclerosis". I sat there confused... thinking this lady is insane, there's no way.

She sends me across the way to a neurologist. I have a pretty expensive specialist copay, so I was not a happy camper! I talked to this guy, he was very nice and knowledgeable. Told me not to worry, he hasn't diagnosed me, just wants to do a few tests. He sent me off to get some blood tests (vitamin d, b12, yes I was deficient and yes I am now taking those each day). Over the next few days I got SoluMedrol infusions and got an MRI.

I'd like to point out, the infusion people were nice but I have no idea why they stick people for a living... I left each day with a nasty bruise!

Anywho, THE day came. I walked into my neurologists office with my mom and boyfriend. First words out of his mouth, "ok... I was really bummed when I looked at your scans....."

So yeah. That's how that went, you get the picture. My neuro was very positive and says I do show signs of past symptoms... Likely numbness that I wrote off as a pinched nerve and fatigue, who doesn't get tired after a long day of work?

Anywho, like many others I've seen on here, he recommended that since I'm young that we get aggressive as soon as we can and start on Tysabri. I know all the risks involved, awaiting my JCV results. Will update as soon as I hear, although I'm pretty convinced that this is the best way to go to have the most normal life possible - I'm just as scared of it as everyone else. We will see!

As far as my outlook on the diagnosis - I've been very positive. I am very hopeful that the treatment will do wonders for me (if I definitely go with it) and I'm positive for all of us that a cure is just around the corner.

Thank you for listening :)

AudRiddle
Getting to Know You...
Posts: 12
Joined: Fri Jan 27, 2017 6:24 am

Re: New member, new illness

Post by AudRiddle » Sat Jan 28, 2017 6:20 am

Well welcome to the not so awesome club of MS. But you are right everyone I have met that has MS are the most supportive people!!

I am relatively new to being diagnosed as well (Oct. 2016). Mine showed up very similar to yours! Typical MS attacking our vision! I like you cried more tears over the money factor thankfully I qualified for the financial program otherwise there is no way I could afford medicine (high deductible insurance). I am 31, but my scan showed past lesions as well. I have been self employed since 2010, so I've never made a habit of going to the doctor (in hind sight maybe that wasn't the best plan of action).

From what I've learned in my few short months, knowledge is power. It is awesome to learn from others. Reach out, try some support groups?! The one thing I got real tired of hearing is, "Oh my so and so friend, relative etc has MS. I'll get you their number, you should call them". That was great the first 5 times. But everytime I've heard it since, I say thank you and move on. I'm hoping to make it to a shared solutions (I am on copaxone) dinner or lunch someime soon but they always fill up before I sign up! I did start a clean diet, call it clean/paleo whatever! I have always been a food lover, and I never thought I'd say it, but I don't miss bread. The meals I make are rich and tasty and so full of nutrients for my (and my husbands) body! I don't get fatigued anymore. I still like being in bed by 10 PM and I don't bode well on less than 8 hours sleep but hey i'll take it! My doctor did not say change your diet but I really don't mind it. I still drink beer in moderation. I never gave up half and half in my coffee. I still eat cheese in moderation. I guess moderation is the key word! I'll add some links if you'd like to try it! I didn't notice a difference at first but after eating well for a month or two, I could really feel a difference!! I have yet to do blood tests (some people are shocked by this) but I do take supplements. As most people say though it is alwyas better to get your nutriention through food.

After 3 1/2 months I have finally added every day workouts into my routine. Working out is sooooo good for all of us, but especially for us with MS. My husband and I do it together and we just do a short 25 minute tape (i love that i said tape, dvd). We started with T25 (a beachbody workout). It's tough but it feels good! I am a formal college althete so I like to sweat!

I'm going to post some of the things I've enjoyed learning about if you are interested. Feel free to take it or leave it!
This girl has some amazing recipes. I did the 7 day food challenge and my husband said it was some of the best cooking I've ever done! ->http://eatdrinkpaleo.com.au/
I ordered the Dr. Wahls protocol book. I've only read some of it so far, but it's got good info!
My aunt follows Dr. Hyman and loves his ideaology on food. 10 day detox diet.
I just came across this girls site and haven't had a chance to try any of her recipes! https://cleancuisine.com/ivy-and-andy-larson-md/
The great part about the world of the internet is sooo much information. My favorite part are the recipes, but I love to cook!!

Positvity is awesome. For a sucky disease the community is great. I control what goes in my body now, and that gives me a lot of power.

jw10216
Newbie
Posts: 4
Joined: Fri Jan 27, 2017 7:56 pm

Re: New member, new illness

Post by jw10216 » Sat Jan 28, 2017 7:06 am

Thank you for the information! I am definitely going to check it out. I love cooking, so this can be good for me. I am definitely unsure how I am going to give up bread- so we will see how that one goes, haha.

The good thing I was told, was that my insurance actually covers Tysabri 100%. If I decide to go with it (after my JCV test comes back), I consider myself lucky. I've seen a lot of people pay over $1000 per treatment, which is pretty much impossible for me at this point in my life, lol.

I'm excited to learn more, I hope more people have great info like you to share, I've got a long journey ahead!

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jimmylegs
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Joined: Sat Mar 11, 2006 3:00 pm

Re: New member, new illness

Post by jimmylegs » Sat Jan 28, 2017 7:33 am

hi jw :) good that you were tested for b12 and d3. if i could strongly recommend that you take those two being down, as a clue that others may be also. did the doc mention any cofactors, suggest any kind of multi or anything?

a widely varied and nutrient dense diet, with close attention to recommended daily amounts for essential nutrients, esp those known to be low normal or outright deficient in ms patients, can be extremely useful. also wise to balance inflammatory vs anti inflammatory components (you can search a few foods for their rating on the IF factor web site and aim for a daily score of +100)

just to chime in re bread, i used to react badly to it when i was zinc deficient. so many seemingly unrelated improvements in gut health after correcting poor zinc status! i can do bread now. it's not a daily thing by any means. i go entire weeks without bread, but around once a month i'll order a pizza and it's no problem at all. when i do shop for bread, i get one made with sprouted flour as it reduces the antinutrient effects of gluten. sourdough bread is supposed to be better in that dept as well. actually found plain old sprouted flour recently too, so can make my own at some point too :D :D :D
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

AudRiddle
Getting to Know You...
Posts: 12
Joined: Fri Jan 27, 2017 6:24 am

Re: New member, new illness

Post by AudRiddle » Sat Jan 28, 2017 8:05 am

Jimmylegs I am learning so much from you! -thank you!
Increase zinc and I can eat a delicious pizza? Sign me up!!!! That is one indulgence I'd like to do once in a while.
I love the info on sprouted bread and sourdough!

I was told that copaxone really takes about 3 months to be effective and made a deal with myself to stay away from inflammatory foods until then.

My medicine with blue cross blue shields was $5900 and some odd dollars. So I hit my deductible after one round. But good ole insurance world they pulled out of the individual market here, and my husband works for a small company so getting insurance through him was an option but was going to cost us over $700/month! There was no way we could do that. Now I have humana and before running through insruance the medicine is $6900! After running through insurance would cost me $2500. I am soooo soooo soooo thankful for the financial assistance program through shared solutions to pay $0. I'll never understand that world!!!

jw10216
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Joined: Fri Jan 27, 2017 7:56 pm

Re: New member, new illness

Post by jw10216 » Sat Jan 28, 2017 8:45 am

Oooo yay. I recently got a kitchen aid mixer and made homemade bread. Maybe I'll try that flour. Thank you both for your information. :) my doc hasn't suggested anything else yet, but I'll be seeing him soon and will definitely ask. I've seen a lot of different suggestions around the internet.

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jimmylegs
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Re: New member, new illness

Post by jimmylegs » Sat Jan 28, 2017 11:50 am

no probs aud :) caveat, i have tests to show that zinc was the issue for me. at some labs i would not have red flagged as deficient so i am very very pleased the lab i was tested at did have a relatively narrow range in place. because fixing that status resulted in a whole array of improvements. AWESOME. it's another in favour of having your own copy of results. and for making sure your level is in the high teens in umol/L, vs just letting the lab decide you're fine even if in the single digits. serum zinc is great to know in combination with serum copper as well. the ratio is important. even more important than either level individually.
and jw yep the internet is a great one for suggestions that is for sure lol. i do hear great things about the ol' kitchenaid!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

jw10216
Newbie
Posts: 4
Joined: Fri Jan 27, 2017 7:56 pm

Re: New member, new illness

Post by jw10216 » Tue Jan 31, 2017 7:58 am

New updates: I'm JCV negative! :) very excited. Starting my treatment tomorrow.

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jimmylegs
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Re: New member, new illness

Post by jimmylegs » Tue Jan 31, 2017 11:25 am

congrats :) had a quick look at tysabri, just mechanism of action:
"The drug is believed to work by reducing the ability of inflammatory immune cells to attach to and pass through the cell layers lining the intestines and blood–brain barrier."
this brings me back to zinc. related prior discussion:

STEROIDS, PAIN MED.'S----LEAKY GUT (2013)
http://www.thisisms.com/forum/general-d ... 22149.html

getting to know your blood-brain barrier (2011)
http://www.thisisms.com/forum/chronic-c ... ml#p174244

more recent literature

Miyoshi, Y., Tanabe, S., & Suzuki, T. (2016). Cellular zinc is required for intestinal epithelial barrier maintenance via the regulation of claudin-3 and occludin expression. American Journal of Physiology-Gastrointestinal and Liver Physiology, 311(1), G105-G116.

Valenzano, M. C., DiGuilio, K., Mercado, J., Teter, M., To, J., Ferraro, B., ... & Wertheimer, J. (2015). Remodeling of tight junctions and enhancement of barrier integrity of the CACO-2 intestinal epithelial cell layer by micronutrients. PloS one, 10(7), e0133926.

Wang, X., Valenzano, M. C., Mercado, J. M., Zurbach, E. P., & Mullin, J. M. (2013). Zinc supplementation modifies tight junctions and alters barrier function of CACO-2 human intestinal epithelial layers. Digestive diseases and sciences, 58(1), 77-87.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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