New and in need of support.

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New and in need of support.

Postby ladyheather » Sun Sep 23, 2012 8:46 pm

Hello there!

My name is Heather and I am 24 years old, and live in the Pacific Northwest. I was diagnosed officially this May. A week ago I was finally able to start on Rebif. This was after my insurance company delayed and finally denied my request for Avonex.

My journey began last year in May, when I suddenly lost vision on my right eye. Not realizing it was neurological I went from optometrist to ophthalmologist and finally to a neurologist where I was told it was a case of optic neuritis. Which is where my MS journey began!

This is not the first time I have been sick however... in 2008, I was diagnosed with an extreme case of ITP (Idiopathic Thrombocytopenic Purpura). Over the years I have lost almost all of my friends because they just don't understand what it is to live with a chronic disease.

Today I had a break down whilst trying to inject myself and I realized I need to speak with people who live the same thing. So, hello!
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Re: New and in need of support.

Postby jimmylegs » Sun Sep 23, 2012 8:57 pm

hello! you'll find plenty of support here. welcome to the forum :)
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Re: New and in need of support.

Postby gymbuff » Mon Sep 24, 2012 1:37 am

Hi Heather

Over the years I have lost almost all of my friends because they just don't understand what it is to live with a chronic disease.


Good friends are very important in supporting you in your bad times but these friends should take time to learn about and understand any chronic illness and then make allowances accordingly. It is a shame that your friends don't fall into this category but you will make new friends here as we are all in the same boat. Stay positive and don't let MS get you down. :-D

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Re: New and in need of support.

Postby lyndacarol » Mon Sep 24, 2012 5:16 pm

Welcome to ThisIsMS, Heather. We are glad you found us. You have a new group of friends 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: New and in need of support.

Postby sophie447 » Tue Sep 25, 2012 3:45 am

Helllo Heather,

I am new here, but I know the people will try to help you, sure understand you and will offer the you the best advice or information they can.

Those of us who do it, know that injecting is no fun. Many day I have stared at that needle and wondered, sometimes for a few minutes, if I will be able to do it. Then I gather myself, and go ahead. It is hard to stay motivated and stick to the decision that was made not so long ago!

I hope you to learn to cope with this new bump life as thrown at you. Stay positive and don't let the MS dominate all aspects of your life. YOu are still the same you.

Best of luck to you.
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Re: New and in need of support.

Postby Youarethecure » Wed Mar 05, 2014 5:01 pm

Hello, I am also pretty new here. This a very helpful and supportive site. I am also young like you but I am a male (25). Its crazy to take this all in but we can overcome this disease.
Just do everything in your power to fight back. Medication, exercise, diet, yoga, meditation, etc etc. Also make sure all your nutrition levels are at the right level. Everything plays a very important role against it not just one thing.
I showed my first sign at 19, but was not diagnosed because everything came back negative. Then went through another episode at 25. I showed many different symptoms but none of them even began to slow me down.
Never be scared because we do not know what will happen or when something will happen. Take advantage of the fact that today you feel fine and normal and enjoy life to the fullest. Staying positive is the absolute most important part.
We have time on our side, the cure is right around the corner. By the time this creature seriously gets to us, there will be a way to repair the damage.

Best of luck to you,

Chris
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Re: New and in need of support.

Postby centenarian100 » Sun Mar 09, 2014 11:37 am

ladyheather wrote:Hello there!

My name is Heather and I am 24 years old, and live in the Pacific Northwest. I was diagnosed officially this May. A week ago I was finally able to start on Rebif. This was after my insurance company delayed and finally denied my request for Avonex.

My journey began last year in May, when I suddenly lost vision on my right eye. Not realizing it was neurological I went from optometrist to ophthalmologist and finally to a neurologist where I was told it was a case of optic neuritis. Which is where my MS journey began!

This is not the first time I have been sick however... in 2008, I was diagnosed with an extreme case of ITP (Idiopathic Thrombocytopenic Purpura). Over the years I have lost almost all of my friends because they just don't understand what it is to live with a chronic disease.

Today I had a break down whilst trying to inject myself and I realized I need to speak with people who live the same thing. So, hello!


Welcome heather.

Sorry to hear that you have lost your friends. Young people often don't have a lot of experience with chronic illness, so they may not be able to understand it. You would think that people in the Pacific Northwest would have some familiarity with MS as it is more common there.

Perhaps you can meet some new friends via the national MS society

It's too bad what happened with your insurance, but if it's any consolation, there is some evidence that rebif is more effective than avonex:

"The EVIDENCE trial (EVidence of Interferon Dose-response: European North American Comparative Efficacy) (Panitch et al 2002) was a randomized, controlled, assessor-blinded, parallel-group study, fulfilling as well the AAN criteria for class I data. It reported evidence for the best benefit-to-risk ratio of higher doses and higher frequency of administration of IFN β 1-a 44 μg s.c. t.i.w. compared to IFN β 1a 30 μg i.m. q.w., and led to the approval of the drug in the United States."

source: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2518386/
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Re: New and in need of support.

Postby sweetjanesvest » Fri Mar 14, 2014 10:14 pm

Hi heather!

I was dx when I was 24 too! My journey also began with vision loss in right eye. Luckily i live in SF and UCSF is one of the best neurological campuses in the US. Drs immediately did MRI and found lesions. I am now 25. Luckily my parent's have a great health plan that covers me until 26, I am on tysabri as dr thought that was the best because it's so effective and I dont have to pay a dime.
My friends don't really know how to react either, but they are very sympathetic. I just have to be honest with them and tell them that I don't feel well and they have to understand I can't do all the things they can every day. I can't work a full shift and then go out drinking. My infusions take a whole day out of me! etc.

I hope you find a good support group. If you want to talk to a woman your age I'm here for you!

Best
janey
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