Diagnosed July 2010- So excited to have found this forum!!

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Diagnosed July 2010- So excited to have found this forum!!

Postby sorshya » Sun Dec 02, 2012 5:32 pm

Hello everyone,

My name is Samantha and I live in British Columbia Canada. I am 30 years old with 3 boys (ages 7, 8 , 9) the youngest and the oldest are my stepsons, and the middle is my biological son. While some people have a hard time with blending families I love all of the boys and we work really hard to meld our family in a healthy way. We definately have hiccups, like every family, but for the most part we do well. Let's call MS one of those "hiccups". My mom was diagonsed with MS when I was 5 and she has moved into progressive MS, with very few leisons and a high quality of life (she never worked but she is still mobile and volunteers. She is our local MS celebrity) - so I thought I was an MS expert. Nope, wrong. In February 2010 my left leg went completely numb. This was following a few short periods of numbness for which I was taking vitiman B. I phoned my doctor and he immediately scheduled an MRI. I know a lot of people have a hard time having MS diagnosed because it mimics symptoms of many other illnesses, however I am lucky that my GP and I have a great relationship and he is also my mom's GP so he understands the family history. He actually had been watching since my son was born because a few previous episodes had seemed "MS like" After the MRI lesions were discovered, however the 14 year old neurologist (I am exaggerating because clearly we didn't get a long) made me wait another 3 months for a follow up MRI before diagnosis. I was then referred to an MS specialist (who is also my mom's neurologist).

I decided to try Avonex to extend my quality of life and based on my research and with the help of the fantastic nurse at the MS clinic we agreed to go ahead since it seemed to fit my very busy life well. I started Avonex in January of 2012 and boy was it bad. Now, many of the side effects were likely MS symptoms as well but I was down and out for 4 days after taking the injection. Flu like symptoms and aching and muscle spasms and fatigue, fatigue fatigue. Fatigue is my biggest challenge with MS and this made it SO much worse. I work for a very large car rental company and I manage an office of 12 agents and have quite a bit of responsibility within the company. So that being said, I muscled through it. Bad plan. I should have stopped, but I tend to be stubborn and because I had committed to 6 months I was determined to follow through with the treatment.

In June of 2012 we bought our first house and it was a fixer upper to say the least. So now add a stressful work life, to the logistics and challenges of a blended family, to MS, to treatment side effects and throw in moving and renovating. Whoops. I crashed. My relationship was in jeopardy and that snapped me out of my stubborn determination that everything was "FINE". Cause it wasn't, clearly. My symptoms together with fatigue included limited vision in my right eye, weakness in my legs and arms, balance challenges, emotional liability and then all of the cognitive adventures that MS brings.

In August 2012 I took 6 weeks off work and stopped the injections. It was the best decision I could have made. I saw my neurologist, and began seeing a therapist to help me understand my reaction to diagnosis. The best thing she taught me is that I can't go to battle with MS, it will win. I must have compassion for myself and understanding of my body and what I am capable of. I have to understand that it is a fluid disease and I will have to accept frequent changes and adjustments and forgive myself for them, even if I let other people down, I can't control it I can only manage it.

I went back to work in October of 2012 feeling pretty good. I missed my job and I was at the point where sitting at home seemed fruitless. Also, leaving work is a big wage hit since I am the bread winner in my family. I had a follow up MRI in November and the results came back disapointing. After the nightmare that was Avonex I believed that I could manage the symptoms of the disease and balance my life without help. Wrong again. Results came back with more leisions totalling over 30. Luckily most of them are in areas that don't affect mobility. The part that tipped the scale for my was my vision. A test revealled demylenation in my right optic nerve to the point where I have only a circle of vision with no peripheral and the vision that I do have is like looking through water.

While my leisons don't affect my mobility much other than weakness and the occasional balance "oopsie" my cognitive abilities are the most affected. I forget whole conversations, words disapear, reason isn't always reasonable and I take a mild anit-depressant to combat emotional liabilty which comes in the form of an explosive firecracker, usually directed at my spouse. It scares me because I like to think of myself as an intelligent and independant woman and I have no control over what this disease is doing to my brain - the possibilities are endless - and mostly it doesn't seem like that's a good thing :)

Based on this, I've decided to try another treatment. I started Copaxone on Friday (November 30th) and am optimistic that it will buy me some time. If it improves my current state then all the better! I haven't yet had any side effects other than the stinging at injection time, no welts or bumps yet but I'm not discounting that possibility. It's actually easier to take than the Avonex because I'm not continually anxious about how I'm going to feel after the shot. I use the auto injector and find it very helpful. I hated manual injections with Avonex and changed to the prefilled syringe as quickly as I could, so I started auto injecting right off the hop with Copaxone. The stinging isn't too bad, I can distract myself from it fairly easily, however this morning I injected into my arm and programmed the depth too deep. I am very small and I think it hit the muscle. That's a lesson learned.

So, that's me in a nutshell. Thanks for reading my long winded introduction - ultimately if nothing else, this was a great way for me to relieve my story to others who are like minded and may be able to share some insight!! I am so thankful that we have this technology to research and to connect to other people. Thank you to the creators of this forum for making this easily accessible and welcoming. I think I'm going to like it here :)
-Samantha
"Whether you think you can or you think you can't you're right"
~Henry Ford
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Re: Diagnosed July 2010- So excited to have found this forum

Postby lyndacarol » Sun Dec 02, 2012 5:54 pm

Welcome to ThisIsMS, Samantha. We are glad you found us and we are glad to have you here.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Diagnosed July 2010- So excited to have found this forum

Postby want2bike » Mon Dec 03, 2012 6:24 am

There are studies showing drugs do no good. You can take control of your disease with diet. Dr. Swanks is the easiest to follow but the Paleo diet is the best. Check out the diet section on this site.

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!

http://www.nytimes.com/2012/07/18/healt ... html?_r=3&

http://www.franksherwood.com/tnms.htm
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Re: Diagnosed July 2010- So excited to have found this forum

Postby sorshya » Tue Dec 04, 2012 10:05 am

Thank you for the nutritional information, much appreciated.
-Samantha
"Whether you think you can or you think you can't you're right"
~Henry Ford
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Joined: Sun Dec 02, 2012 4:50 pm

Re: Diagnosed July 2010- So excited to have found this forum

Postby jimmylegs » Tue Dec 04, 2012 10:23 am

more detailed info at links below if you need. welcome to TiMS :)
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