36 yo, diagnosed 5/1/14 w/RRMS

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rancholulu
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36 yo, diagnosed 5/1/14 w/RRMS

Post by rancholulu »

Hello! I'm Angie. I'm 36 years old, I've been married 9 years and have no children. In fact, my husband and I have had fertility issues for 7 years. We're gearing up to see a new Reproductive Endocrinologist at the end of June.
I am one month in to my diagnosis and I feel nothing but blessed and thankful. It only took 2 months to get a diagnosis (and 2 months felt SUPER LONG as it was!!)- I woke up with numbness through my entire right leg one morning. It ended up traveling to my left knee, which is now still numb, but my right leg gained all sensation back. My vision in my left eye became saturated/spotty after the numbness occurred, and after seeing my primary physician, a neurologist, and my ophthalmologist twice, the oph. referred me to a retinal specialist who diagnosed me with optic neuritis. From there I saw a new neurologist (the first one griped me out over the phone so I decided to see one who would actually listen to me) who took immediate action and sent me same day for MRIs. My MRI tech told me he saw something, which he's TOTALLY not supposed to do, but I was really glad he told me, because I think it was then, inside the "dog house" (the MRI tube), that I closed my eyes, took deep breaths, and accepted it. Within a few days my husband and I were in the neurologist's office receiving the news that I had already prepared to hear. I am thankful that I had time to suspect it's what it was. It was nice not to feel shock. And from there I've had nothing but amazing support and people telling me how manageable MS is these days. And it's very true. I lucked out and got in to the best doc at USC. He put me on a 5 day IV of steroids (Solumedrol) which KNOCKED me out- I was horribly fatigued and couldn't get to work. Luckily my boss has been nothing but supportive of me too. So I read a lot about Tecfidera and spent a lot of time on the phone with the prescribing pharmacy and financial assistance. At one point I was told I'd have to pay $1400 for a 30 day supply of Tecfidera! But I qualified for a $0 copay somehow. Thank the LORD!!!! So now I'm on day 4 of Tecfidera. The only side effects I've had so far is a little tingling in the face on the first 2 days. But I always take it after a meal and I was told that 8 out of 10 patients don't have any problems with it. Whether that's true or not, it was a huge relief to hear and helped me to relax about it.
Good luck to all of you. We didn't choose this route for our lives, but like it or not, it's the road we are on. I'm choosing to approach it with grace, with strength funneled to me from my loving friends and family, and even this community here on the interwebs. I'm thankful to be alive, and I'm thankful to have such hope. LOVE and LIGHT to you ALL!!!!
Youarethecure
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Re: 36 yo, diagnosed 5/1/14 w/RRMS

Post by Youarethecure »

Awesome attitude!

It can be very manageable to live with. At least for me it is and many others. Look into what type of diet you should be on. Nutrition/vitamins and medication are a very big part of it too. Exercising plays a huge role as well, the more the better. I weight lift and do cardo 4 times a week for well over an hour each time. You already have a huge piece of the puzzle... being strong and positive minded.

I am 25 and male but like you, in the beginning of my new battle. We need to slow the progression of this demon as best as we can. that's done with diet, exercise, medication, nutrition, attitude, etc etc etc.

Best of wishes,

Chris
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jimmylegs
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Re: 36 yo, diagnosed 5/1/14 w/RRMS

Post by jimmylegs »

hi and welcome angie!!

sorry to hear about your dx and fertility issues.

i have lots of nutrition info to share if you are interested. not sure re the nature of your particular fertility issues, but fyi i helped my supervisor at my old job successfully conceive in 6 weeks after she started working on diet and supplementation (after only a year and a half with no success though, not seven!).

there are some nutrients that are low in ppl with ms as well as ppl with fertility issues. have the docs run any nutrient status tests on your and/or your hubby?
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jimmylegs
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Re: 36 yo, diagnosed 5/1/14 w/RRMS

Post by jimmylegs »

The role of zinc in reproduction
http://link.springer.com/article/10.1007/BF02784623
Zinc is a very important element in the reproductive cycle of species. In humans, it is necessary for the formation and maturation of spermatozoa, for ovulation, and for fertilization. During pregnancy, zinc deficiency causes a number of anomalies: spontaneous abortion, pregnancy-related toxemia, extended pregnancy or prematurity, malformations, and retarded growth. Delivery is adversely affected by deficiency. These different effects of zinc can be explained by its multiple action on the metabolism of androgen hormones, estrogen and progesterone, together with the prostaglandins. Nuclear receptors for steroids are all zinc finger proteins. Zinc supplementation has already proven beneficial in male sterility and in reducing complications during pregnancy. However, it would be worth conducting larger-scale trials to confirm these beneficial effects.
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jimmylegs
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Re: 36 yo, diagnosed 5/1/14 w/RRMS

Post by jimmylegs »

if you don't have blood work, you could also look at diet. eg zinc supplement recommendations for ms patients are on the order of 25-50mg per day. the recommended upper limit over the long term is 40mg per day. you can review your diet and see how close your food choices are getting you to 40mg daily dietary zinc:
http://www.whfoods.com/genpage.php?tnam ... #foodchart
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lyndacarol
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Re: 36 yo, diagnosed 5/1/14 w/RRMS

Post by lyndacarol »

rancholulu wrote:Hello! I'm Angie. I'm 36 years old, I've been married 9 years and have no children. In fact, my husband and I have had fertility issues for 7 years. We're gearing up to see a new Reproductive Endocrinologist at the end of June.
I am one month in to my diagnosis and I feel nothing but blessed and thankful. It only took 2 months to get a diagnosis (and 2 months felt SUPER LONG as it was!!)- I woke up with numbness through my entire right leg one morning. It ended up traveling to my left knee, which is now still numb, but my right leg gained all sensation back. My vision in my left eye became saturated/spotty after the numbness occurred, and after seeing my primary physician, a neurologist, and my ophthalmologist twice, the oph. referred me to a retinal specialist who diagnosed me with optic neuritis. From there I saw a new neurologist (the first one griped me out over the phone so I decided to see one who would actually listen to me) who took immediate action and sent me same day for MRIs. My MRI tech told me he saw something, which he's TOTALLY not supposed to do, but I was really glad he told me, because I think it was then, inside the "dog house" (the MRI tube), that I closed my eyes, took deep breaths, and accepted it. Within a few days my husband and I were in the neurologist's office receiving the news that I had already prepared to hear. I am thankful that I had time to suspect it's what it was. It was nice not to feel shock. And from there I've had nothing but amazing support and people telling me how manageable MS is these days. And it's very true. I lucked out and got in to the best doc at USC. He put me on a 5 day IV of steroids (Solumedrol) which KNOCKED me out- I was horribly fatigued and couldn't get to work. Luckily my boss has been nothing but supportive of me too. So I read a lot about Tecfidera and spent a lot of time on the phone with the prescribing pharmacy and financial assistance. At one point I was told I'd have to pay $1400 for a 30 day supply of Tecfidera! But I qualified for a $0 copay somehow. Thank the LORD!!!! So now I'm on day 4 of Tecfidera. The only side effects I've had so far is a little tingling in the face on the first 2 days. But I always take it after a meal and I was told that 8 out of 10 patients don't have any problems with it. Whether that's true or not, it was a huge relief to hear and helped me to relax about it.
Good luck to all of you. We didn't choose this route for our lives, but like it or not, it's the road we are on. I'm choosing to approach it with grace, with strength funneled to me from my loving friends and family, and even this community here on the interwebs. I'm thankful to be alive, and I'm thankful to have such hope. LOVE and LIGHT to you ALL!!!!
Welcome to ThisIsMS, rancholulu (Angie).

I, too, admire your attitude.

Although you have not asked for my opinion, please allow me to share a few thoughts: Did any of your doctors order testing for a possible vitamin B12 deficiency? Any one of them can do it – even the Reproductive Endocrinologist you will see later this month.

I encourage you to check out this thread: http://www.thisisms.com/forum/natural-a ... 24857.html and all the links there. By the way, infertility can result from a B12 deficiency. Many of your other symptoms also are common to a B12 deficiency. I encourage you to read the book, Could It Be B12? An Epidemic of Misdiagnoses – it might be available at your library; doctors are human – misdiagnoses are always possible.
Last edited by lyndacarol on Wed Jun 04, 2014 6:46 am, edited 1 time in total.
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jimmylegs
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Re: 36 yo, diagnosed 5/1/14 w/RRMS

Post by jimmylegs »

not to mention the rest of the essential vitamins and minerals.. zinc and b12 are a very thin end of a very large wedge of nutritional info when it comes to ms and health in general!

http://ods.od.nih.gov/factsheets/Zinc-H ... fessional/
Zinc is involved in numerous aspects of cellular metabolism. It is required for the catalytic activity of approximately 100 enzymes [1,2] and it plays a role in immune function [3,4], protein synthesis [4], wound healing [5], DNA synthesis [2,4], and cell division [4]. Zinc also supports normal growth and development during pregnancy, childhood, and adolescence [6-8] and is required for proper sense of taste and smell [9].

http://ods.od.nih.gov/factsheets/Vitami ... fessional/
Vitamin B12 is required for proper red blood cell formation, neurological function, and DNA synthesis [1-5]. Vitamin B12 functions as a cofactor for methionine synthase and L-methylmalonyl-CoA mutase. Methionine synthase catalyzes the conversion of homocysteine to methionine [5,6]. Methionine is required for the formation of S-adenosylmethionine, a universal methyl donor for almost 100 different substrates, including DNA, RNA, hormones, proteins, and lipids.
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want2bike
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Re: 36 yo, diagnosed 5/1/14 w/RRMS

Post by want2bike »

Nutrition is very important in treating all disease and that is the first place to start. If you are looking to get pregnant I would examine the use of the drugs you are wanting to take and how they might effect your baby. What ever is in your body will be in the babies body. There are studies showing the drugs do no good. Just because the drugs cost you nothing is not a reason to take them. They are used for temporary relief and if you are wanting to get better there are better choices. I'll give you Dr. Bergman's video which will explain the problem.



rancholulu
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Re: 36 yo, diagnosed 5/1/14 w/RRMS

Post by rancholulu »

Wow, thanks everybody!! I'm overwhelmed by such quick and informative responses. My husband and I are starting a Paleo diet, we bought Dr. Wahl's book and have started reading that. We are pretty healthy, we have always enjoyed trying to eat healthy (although I'm guilty of having a bit of a sugar addiction), we love to run and have run two half-marathons at Disneyland in the past few years. Unfortunately, we've had to stop over the past few months with the leg numbness. I tried running a couple of times right when it was newly numb and my legs felt too fatigued at the time to do it. But we walk in our neighborhood/hike for at least 30 minutes, 6 days a week and yesterday I jogged a few steps and feel like soon we can start back. Maybe just a couple of miles in the beginning. I've enjoyed walking too, though. I have always just been a runner and never realized how great walking (for exercise) is. It's good bonding time for me & the hubs.

RE: the fertility, or lack thereof, I do feel like there has to be a way to conceive without resorting immediately to IVF. And honestly, we are big fans of adoption, so that's not out of the question for us. But I really love the idea of trying to figure out what I need to change about my diet to align better with increased chances of conceiving. My husband had a varicocele surgery in February, and we will find out the results of that in a couple of weeks, whether it improved his semen quality. We think that might have been a pretty big factor, but in the big picture, there really are so many things that can interfere with conception. It's cray! And then there's my older sister who is about to have her 7th baby...!!! Well, I'll keep you guys updated on things. Thank you again, all of you, for your sharing and your kind reception of this new "member" of the club.
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jimmylegs
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Re: 36 yo, diagnosed 5/1/14 w/RRMS

Post by jimmylegs »

no probs :D

ah, i think you might find some interesting reading via these earlier TiMS topics:

http://www.thisisms.com/forum/search.ph ... mit=Search

also of potential interest (even though they don't seem to have quite gotten around to doing similar studies in humans yet)...:

Effects of zinc on male sex hormones and semen quality in rats
JN Egwurugwu, CU Ifedi, RC Uchefuna, EN Ezeokafor, EA Alagwu

Abstract
This study assessed the effects of zinc on male sex hormones and semen quality in male albino wistar rats. Forty rats weighing between 150- 210g, grouped into 5 of 8 rats each, were used for the research that lasted for six weeks. Group I, the control group, received normal rat chow and water ad libitum. The four test groups II-V, received 20g, 40g, 60g and 80g of zinc sulphate mixed with their rat chow respectively in addition to water for six weeks. Blood samples were collected and assayed for Luteinizing hormone (LH), follicle stimulating hormone (FSH), Prolactin (PL), testosterone (T), progesterone and oestradiol. Semen was also analysed for sperm motility, sperm count and morphology. Results showed statistically significant decrease in serum levels of follicle stimulating hormone (FSH) (p< 0.05) in groups II and IV with mean values of 0.10±0.00 and 1.20±0.00 respectively when compared with the control (1.10±0.10). The results also revealed statistically significant increase in the serum levels of testosterone in groups II, III and IV with mean values of 3.60±1.40, 4.5±0.30 and 0.80±0.70 respectively when compared with the control with a value of 0.35±0.15. The increase in testosterone levels were dose dependent as there were consistent increment in groups II and III after which the levels decreased with increasing zinc concentrations. There was statistically significant dose dependent decrease in sperm motility and morphology in the test groups compared with the control (p<0.05). In conclusion, zinc sulphate has some significant positive effects on male sex hormones and sperm quality at doses within physiological levels but harmful at higher doses.

Trans fatty acid intake is inversely related to total sperm count in young healthy men
http://humrep.oxfordjournals.org/conten ... 4.abstract
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