Being Diagnosed

9/30/2013

Being diagnosed with RRMS was a game changer for me, I remember thinking that I would be dead or in a wheelchair in no time. Since then I have come to terms with my diagnosis and my outlook has dramatically improved. I have been through a few different neurologists and several different drug therapies since arriving in my current situation.

As someone that has been through the shock of being diagnosed and having landed on my feet (usually) I am able to help out my younger brother who was diagnosed this morning. There is so much I want to tell him but I don't want to overwhelm him right off the bat. So many choices of drugs let alone lifestyle changes to consider, where to start. What is the single most important piece of advice I should tell him? I told him to start eating healthier and continue to remain fit so that he could listen to his body.

If you could lend one piece of advice to someone that was diagnosed today, what would it be?

Thanks,
Donn

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Important Safety Information

Before beginning treatment, you should discuss the potential benefits and risks associated with Rebif with your healthcare provider.

Rebif can cause serious side effects. Tell your healthcare provider right away if you have any of the symptoms listed below while taking Rebif.

Behavioral health problems, including depression and suicidal thoughts. You may have mood problems including depression (feeling hopeless or feeling bad about yourself), and thoughts of hurting yourself or suicide
Liver problems or worsening of liver problems, including liver failure. Symptoms may include nausea, loss of appetite, tiredness, dark colored urine and pale stools, yellowing of your skin or the white part of your eye, bleeding more easily than normal, confusion, and sleepiness. During your treatment with Rebif you will need to see your healthcare provider regularly and have regular blood tests to check for side effects
Serious allergic and skin reactions. Symptoms may include itching, swelling of your face, eyes, lips, tongue or throat, trouble breathing, anxiousness, feeling faint, skin rash, hives, sores in your mouth, or skin blisters and peels
Injection site problems. Symptoms at the injection site may include redness, pain, swelling, color changes (blue or black), and drainage of fluid
Blood problems. Rebif can affect your bone marrow and cause low red and white blood cell and platelet counts. In some people, these blood cell counts may fall to dangerously low levels. If your blood cell counts become very low, you can get infections and problems with bleeding and bruising. Your healthcare provider may ask you to have regular blood tests to check for blood problems
Seizures. Some people have had seizures while taking Rebif

Rebif will not cure your MS but may decrease the number of flare-ups of the disease and slow the occurrence of some of the physical disability that is common in people with MS.

Do not take Rebif if you are allergic to interferon beta, human albumin, or any of the ingredients in Rebif.

Before you take Rebif, tell your healthcare provider if you have or have had any of the following conditions:

mental illness, including depression and suicidal behavior
liver problems, bleeding problems or blood clots, low blood cell counts, seizures (epilepsy), or thyroid problems
you drink alcohol
you are pregnant or plan to become pregnant. It is not known if Rebif will harm your unborn baby. Tell your healthcare provider if you become pregnant during your treatment with Rebif
you are breastfeeding or plan to breastfeed. It is not known if Rebif passes into your breast milk. You and your healthcare provider should decide if you will use Rebif or breastfeed. You should not do both

Tell your healthcare provider about all medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements.

The most common side effects of Rebif include:

flu-like symptoms. You may have flu-like symptoms when you first start taking Rebif. You may be able to manage these flu-like symptoms by taking over-the-counter pain and fever reducers. For many people, these symptoms lessen or go away over time. Symptoms may include muscle aches, fever, tiredness, and chills
stomach pain
change in liver blood tests

Tell your healthcare provider if you have any side effect that bothers you or that does not go away.

These are not all the possible side effects of Rebif. For more information, ask your healthcare provider or pharmacist.

Call your doctor for medical advice about side effects.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Indication

Rebif is used to treat relapsing forms of MS to decrease the frequency of relapses and delay the occurrence of some of the physical disability that is common in people with MS.

US-INF-0814-0017A
RBU680907-01

Denise

10/1/2013 02:37:41 am

Stay positive! Hopefull! Have Faith! If he's anything like you and me Donn, the sense of humor really helps!!! You know that! Get on a preventative medication as soon as you can! It can take up to 3 mo's for the meds to kick in. I say either the IV Tysabri (I just had my 87th infusion) or the newest FDA approved pill that's similar to the results of Tysabri) I know a few ppl who went on it cuz of PML. They say they like it, not really any side effects, but we are all so differant. My advice-get on a strong preventative therapy soon,excerise, try to eat as healthy as you can! Sending good vibes your way;~)

Donn

10/1/2013 03:50:46 am

Thanks for your advice Denise, I'm trying to keep it as positive as possible with him. He is lucky to have caught it so early!

10/2/2013 12:48:07 am

Also, I know a few people who's siblings have it too. Example,one's in a WC and her sister is doing fine. You can't even tell she has it. That's how you're bro might be, a more milder case, ya know? The MyStery disease! THE MAIN THING IS AVOID STRESS!!!

Jessica

10/29/2013 12:51:21 am

Advice?

*to write everything down.... every "symptom" (real or not just in case it happens again)

*ask questions.... In the beginning I didn't know what to ask, who to ask, where to look. For questions in between appointments- write those down too. I used to think "oh I'll ask at my next appointment..." but I always forgot.

*Take time to relax- Having MS can be overwhelming. The feeling of being fine one day and all of a sudden feeling like a mack truck ran you over after you fell down a flight of stairs the next is really disheartening.

In a nutshell those were the least of all overwhelming advices I'd give.

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