Newly diagnosed and confused

[Diane S]

nfusedHello

I'm 36 and what felt like a sinus infection last February turned out to be optic neuritis. While in the hospital on steriods, an MRI showed 5 lesions. Three neurologist opinions all told me to go on interfurons immediately. After much trepidation, I did. Now it is November and nothing has changed aside from injection spots and flu like symptoms. I have done a lot of reading of books, articles and blogs and the story is usually people living with symptoms for years before getting a diagnosis, that is not me. I have always been healthy. As awful as the symptoms are, I almost wish something would happen to show me that yes, I have MS and this is what is coming. Something to tell me that I am taking this medication for a reason. I know it is still early and the first few years can be symptom free. A second MRI showed stability which is good news. Well, that is my story. I do appreciate message boards like this one, but there are times it is too hard to read. I would like to meet others who are in this same boat, a diagnosis after one episode, then nothing.

[Leola Stotts]

WE ALL HAVE OUR OWN SYMPTOMS AND STORIES. MS IS NOT THE SAME FOR ANY OF US. IT IS HARD TO DIAGNOSE. YOU CAN GO FOR YEARS WITHOUT ANY FLARES (PRAISE GOD). TAKING THE MEDICATION IS IMPORTANT. IT IS LIKE A GIANT ICEBERG. YOU DO NOT SEE WHAT IS HAPPENING BENEATH THE WATER. THE MEDICINE IS WORKING ON THAT. IT IS SLOWING THE PROGRESSION. IT IS HELPING YOUR BRAIN/SPINAL COLUMN TO BE PROTECTED. DON'T GET DISCOURAGED OR GIVE UP. THE FLU SYMPTOMS AREN'T MUCH FUN BUT THE ALTERNATIVE COULD BE RAPID PROGRESSION OF THE DISEASE. MAKE SURE YOU PRE MEDICATE BEFORE AND AFTER THE INJECTIONS AND THAT WILL HELP.

[khris]

I was dx a year and a half ago. Been taking Rebif ever since. I have not had a flare since. Minor symptoms here and there and always in the back of my mind that something could happen at any moment. I too, at times, feel like , ok lets just get the first one out of the way so I know what MS is....and that I really do have it.

the flu sx will get better. After taking Rebif for about 8 months I no longer got them. So, hang in there and things will get better.

[Bob698]

MS is one of those things that teaches you patience. At the end of the day, its not about Sx as much as its about the results of your next MRI.

[KoKo]

Hello Diane S

Welcome to MS World!

As awful as the symptoms are, I almost wish something would happen to show me that yes, I have MS and this is what is coming. Something to tell me that I am taking this medication for a reason.

It sounds like you are doubting your diagnosis. From my perspective, I think that having optic neuritis, 5 MRI lesions, and 3 neurologist opinions would be somewhat convincing.

I have done a lot of reading of books, articles and blogs and the story is usually people living with symptoms for years before getting a diagnosis, that is not me.

Many people have to wait years for a diagnosis, because the specific criteria for an MS diagnosis is not met. In your case, it sounds like all the criteria was met (for info on this, google McDonald Criteria). Simply having neurological symptoms is not enough for an MS diagnosis.

Well, that is my story. I do appreciate message boards like this one, but there are times it is too hard to read. I would like to meet others who are in this same boat, a diagnosis after one episode, then nothing.

We're glad you stopped by to share your story. If you have any questions, we'll be glad to help if we can.

Also, why don't you pose your question in the General Questions and Answers Forum? You could ask if other members have had a diagnosis after one episode, and then nothing. More members interact in that forum, and so you may get more responses.

In any case, you've only been diagnosed for not even a year. Some people have few relapses during the course of their disease. You may be one of those fortunate ones. And if your DMD is causing you way too much discomfort, you can always switch to a different one.

Good luck to you!

Take care,
KoKo

[dre73]

Welcome, and living with MS has been a difficult road for many of us, including myself. I got diagnosed in Aug 2007, after the same symptom you had, optical neuritis, i've had countless relapses, countless mri's and am going on my 3rd attempt at a med thats gonna work for me. Dont dwell on wanting something to show you that you have it, grace the reality that you're possibly the lucky few who might breeze thru a few yrs or so with no relapses. Good luck!

[Jonaatsen]

Hey Diana

I was diagnoses in february and I still struggle every day. Not physically, but emotionally. I cannot seeem to understand why this is happening to me; i cannot get my head around it. I'm hoping this will eventually result in an acceptance of some kind, with the help of my GP and a psychologist. My boyfriend and family do what they can, but because they are also involved, I cannot speak a 100% freely about what is on my mind, hence the psychologist. Know that you are not alone and allow yourself enough time to come to terms with the cards that you were dealt. In return, I will try and do the same . Make sure you take painkillers or fevertablets to reduce the flulike symptoms. I always take one Ibuprofen of 800mg before injecting with Avonex and I don't have any side effects.
Greetings from Belgium,
Jona