Just diagnosed with MS recently/ frightened and curious.

A forum dedicated to the younger people living with MS reflecting their unique concerns.

Just diagnosed with MS recently/ frightened and curious.

Postby donnonotin » Sat Mar 09, 2013 6:16 pm

Hello everyone! My name is Donovan and I'm 23 years old. I've been experiencing subtle symptoms of MS since I was roughly 20 years old. Although, I did not understand what was happening for the longest time until I got into a car accident and the symptom of me going temporarily blind showed itself again. My vision will randomly begin cutting out almost as though a bad video connection to a television would simulate! As you may imagine it has always been a frightening ordeal and I'm just thankful I got to the bottom of what the culprit was exactly.

My concerns and fears revolve around the fact this condition is a deteriorating one. I have only heard a handful of stories in regards to multiple sclerosis and I"m very concerned with the length of time I allowed symptoms to persist without taking further investigations into what was happening exactly! I understand I am a very young adult on the verge of beginning my own life and I want to know if there's anything I should naturally avoid as far as lifestyle and habituation?

Also my neurologist gave me two options for medication. They are both intramuscular injections, one is once a week and another 3 times a week. If anyone has any information about these drugs and what they do in your brain to slow the process of your immune cells attacking your CNS please help me become more aware of an individual.
-avonex; once a week dosage
-rebif; thrice a week

It is to my attention that these two drugs are classified in the same family and behave in similarity. Although, I don't understand what sites of the mind they target, or what they do exactly to prove any usefulness in fighting this defect from taking place.

Thank you for any information in advance and I encourage anyone to stay strong and overcome any obstacles that debilitate you! Define yourself, and disallow anything/anyone from taking this freedom you are given at birth! :P
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Re: Just diagnosed with MS recently/ frightened and curious.

Postby NHE » Sun Mar 10, 2013 3:00 am

Welcome to ThisIsMS. the decision of which medication to go on can be overwhelming. I was on Avonex for 10 years. Here is my experience in choosing a med. avonex-f5/topic16456.html#p163704

By the way, both Avonex and Rebif are the same drug, interferon beta-1a. However, Avonex is an intramuscular injection once a week while Rebif is given subcutaneously three times a week. The subcutaneous injection with Rebif results in a higher probability of an injection site reaction. The total dosage is also higher with Rebif which can lead to greater side effects.

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Re: Just diagnosed with MS recently/ frightened and curious.

Postby trisca » Sun Mar 10, 2013 1:37 pm

Hi Donovan, I was diagnosed when I was 19, after a few years of symptoms. So I know exactly what you're going through regarding just starting out your life and feeling like it is ripped from you and you've stepped into a perpetually uncertain state of planning for the future.

That was 20 years ago. I spent the years between 19 and 38 new symptom free. What I would say to you, or at least to my younger self is don't right off your future just yet. After diagnoses I changed my major from business to religion, eventually I went into the workplace and started towards a chartered accounting designation but then stopped because I moved to the UK, but once in the UK I didn't bother to pick it up again. All because I was always thinking 'what's the point, I won't be able to do it for long' and here I am nearly 40 and I would still be able to do these things.

Of course that's me not you but you never know. I think (I could be wrong) that statistically the younger you are diagnosed the milder your symptoms in the long run so don't write your life off yet the way I did.

I don't have any advice about the drugs, the didn't exist back then. When they did come into the market there didn't seem to be much point in me taking them because I didn't have many outward symptoms.
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Re: Just diagnosed with MS recently/ frightened and curious.

Postby Youarethecure » Sat Feb 08, 2014 10:26 am

OP, you have been diagnosed?

You need to start medication, there are plenty more out there than just those two. See other doctors or do research on here. Medication is only part of the battle. You also need to eat a proper diet, do proper exercising/lifting. There are so many things that help your body fight against it. Even yoga and meditation have been shown to help.

The biggest piece of the puzzle is being positive and strong. Never give in and let it take your life over. We don't know what path it will take against us but being so young and catching it can keep it away for a very long time. Always seek solace in the fact that we will most likely see a cure or serious treatment that crushes this disease on our life time.

Best of luck,

Chris
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Re: Just diagnosed with MS recently/ frightened and curious.

Postby bertomonster » Sat Feb 08, 2014 11:30 am

Hey Donovan! My name is Alberto. I'm about to turn 23 in March. I was recently diagnosed Back in November after going to the doctor after an incident at work where my left arm and left leg went kinda numb. This had never happened to me ever so I went to the doctor just to be safe. Two days later I'm hearing crap from my neurologist saying how my MS flared up and what not, to which I replied to her, "Wait! What!? I have MS!?" 2 months later my doctor had me start on a medication called Extavia. It's an injection I give myself every other day with one of those auto-injectors. It's supposedly able to reduce flare ups and relapses by thirty-something percent or so. I appear to have a mild form of MS so this was the best option for me. You may want to inquire about this treatment too. I'll be on this treatment pretty much for the rest of my life as long as it shows to be effective and my MS doesn't become more aggressive.
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