SCARED AND CONFUSED

[gypsy]

HI EVERYONE. I AM NEWLY DIAGNOSED WITH MS AND IM REALLY SCARED. IM 31, MARRIED WITH THREE KIDS, AGES 15, 12, AND 6. IM A MANAGER AT A MAJOR NON PROFIT REPRO HEALTH CLINIC.
ABOUT A MONTH AGO, I BEGAN HAVING BLURRED VISION IN MY LEFT EYE ONLY. A FEW DAYS LATER I STARTED HAVING NUMBNESS AND TINGLING IN MY LEFT HAND. I WENT TO THE ER BECAUSE I THOUGHT I WAS HAVING A STROKE. THE ER DOC RULED OUT A STROKE AFTER A BUNCH OF TESTS (CT SCAN, EKG, LABS) AND TOLD ME I SHOULD SEE MY PCP AND MAYBE HAVE AN MRI. I ASKED HIM WHY AN MRI, HE SAID TO RULE OUT SOMETHING LIKE MS. THAT WAS THAT. I WENT TO SEE MY DOC 2 DAYS LATER. SHE ORDERED AN MRI. ON WEEK LATER, I HAD AN MRI OF MY BRAIN. IT SHOWED TWO MASSIVE LESIONS IN THE LEFT SIDE. THE NEURO THAT I WAS REFERRED TO THEN ORDERED AN MRI OF MY SPINE. THAT ENDED UP SHOWING A LESION IN THE CERVICAL CORTEX OF THE SPINE. THE NEURO SAYS THAT NORMALLY, TWO INCIDENTS HAVE TO OCCUR TO MAKE A DIAGNOSIS OF MS, HOWEVER GIVEN THE PROGRESSION OF MY SYMPTOMS (I CAN NO LONGER FEEL MY LEFT HAND AND THE NUMBNESS AND TINGLING HAVE CONSUMED THE ENTIRE LEFT SIDE OF MY BODY) AND FAMILY HISTORY (MY MOTHER HAD MS, SHE WAS 24 WHEN DIAGNOSED) HE IS CERTAIN OF THE DIAGNOSIS. I AM SCARED. I DONT KNOW WHY THIS IS HAPPENING TO ME. I CRY ALL THE TIME. I HAVE PANIC ATTACKS ABOUT MY SYMPTOMS. I CANT EVEN PUT MY BRA ON BY MYSELF ANYMORE! THIS SUCKS! I HAD ORIGINALLY OPTED TO START AVONEX, BUT CHANGED MY MIND AFTER READING ABOUT THE SIDE EFFECTS. MY DOC SAID I COULD CHOOSE IV CORTISTEROIDS AND SPEND A FEW DAYS IN THE HOSPITAL, OR DO AN EXTREMELY HIGH DOSE OF ORAL STEROIDS (PREDNISONE) EVERY DAY FOR TWO WEEKS. I'VE CHOSEN THE PREDNISONE. I FEEL LIKE IT WILL BE THE LEAST DISRUPTUIVE TO MY BUSY LIFE. I SHOULD ALSO MENTION THAT A FEW MONTHS AGO MY HUSBAND WAS IN A HORRIFIC ACCIDENT AND BROKE NEARLY EVERY BONE ON THE LEFT SIDE OF HIS BODY (LITERALLY) AND YES, WE ARE NOW BOTH MESSED UP ON THE LEFT SIDE. I HAVE BEEN HELPING TO CARE FOR HIM SINCE HE'S BEEN HOME IN ADDITON TO CARING FOR THREE KIDS AND WORKING FULL TIME. THIS IS AN ABSOLUTE NIGHTMARE. I JUST WANT TO WAKE UO ONE MORNING FEELING NORMAL AGAIN. WILL THAT EVER HAPPEN?

[KoKo]

Hello Gypsy

Welcome to the MS World Forums - nice to meet you

My goodness, in a matter of a month your world has been turned upside down. (I think the word you used - "nightmare" - is appropriate here.) I'm sorry to learn of your husband's accident too.

I can see why you are full of anxiety, fear, and confusion. Everything seemed to happen so fast, and you have your husband, kids, and job to attend to.

Let's keep hopeful and positive that your steroid treatment will curb the current inflammation, and your symptoms will ease up. And then perhaps the MS will go into remission. It could happen.....

Also, you shouldn't have to struggle with panic attacks and extreme anxiety. There are medications to treat those symptoms, at least to take the edge off. It's not good to be living under extreme stress, especially at this time.

I can't promise that you will feel normal again. But I'm going to make a guess that you will feel better than you are feeling now, over time. That's my wish for you

Many of us find that by taking each day as it comes, and dealing with each challenge as it arises is more beneficial than letting our imaginations take us to (and overwhelm us with) all the worst case scenarios.

Keep us posted as to what's going on and how you're doing. We'll be as supportive as possible. Best wishes to you and your family

Take care,
KoKo

[cocogirl]

Hi Gypsy, and welcome but sorry for reason. Many of us have eye problems from MS as our first sxs. I have had many optic neuritis problems so that is my problem. I only read the last of your post because of eyes bothering me and you asked will it ever get better. For most of us we do have better periods because we have RRMS. I know that for many it gets better because we go through the grieving process and dealing process and then we get the gumption process going. Each person is as different as the sxs of MS. We are here for you and will listen to whatever you have to say. I was not trying to complain about the type, I was trying to explain that I didn't read all of your post but I am interested.

[JoanFrances]

Oh my

I can see why you feel so over whelmed. You have had a lot to deal with in a short time.

But try to remember all we can do is one day at a time. A friend of mine always says, "Reliving yesterday, or worrying about tomorrow, leaves us peeing all over today".

We all went threw the period of time asking the "what if's", but in the end, no one can tell us for sure.

I pray you get some relief and some answers quickly. Please come back and let us know how you are doing, or any time you need a lift or need to vent.

[fishead]

Gypsy honey, it is very natural/human to be frightened. Utilize your supports (family friends community) to help you. You WILL get past the fear, I promise!

[FutureHope]

Care and Concern

It sounds like an overwhelming, scary time in life. I'll try to address two of your concerns. First, "why is this happening?". It is NOT due to anything you have done or neglected to do; and since God does not try us with evil things (James 1:13) he is not doing this to you.
He is good, and has shown that in his creation (Acts 14:17; Romans 1:20). He never acts unjustly (Job 34:10). Unfortunately "time and unforeseen occurrence" afflict all of us (Ecclesiastes 9:11). You can learn more answers to the question "Why Does God Allow Suffering?" in the publication- "What Does the Bible Really Teach?".
Your other question about whether you will ever feel normal again, is complicated. Man is unable to cure all disease. You will have good and bad days now; however, there is hope. When Jesus was on earth his curing people of all sorts of illness demonstrated that he has the power and desire to do so (Luke 7:22; Luke 9:11). Soon, under the rule of God's kingdom all sickness will be eliminated and the ill will be cured (Revelation 21:4; Isaiah 33:24). More information on these points, and much more can be learned from the same publication mentioned above- What Does the Bible Really Teach?- in chapters such as: "What is God's Kingdom?" and "What is God's Purpose for the Earth?".

I know these answers will be very encouraging and reassuring. God has in mind for us as Jeremiah 29:11, 12 show that he has "thoughts of peace, not of calamity toward us", offering us "a future and a hope". He encourages us to pray and he will listen to prayers made in faith, or asking for help to learn about Him so we can have faith.
The publication I have mentioned- "What Does the Bible Really Teach?" is being offered, free of charge along with a free bible education program, by over 7 million volunteers, in over 236 lands, and is available in about 500 languages. These well mannered, respectfully dressed individuals may knock on your door to share this information with you; take the time to listen rather than responding with an "I'm not interested". You will benefit from doing so.

[rubberlegs]

Hi,
the steroids won't slow the progression of MS.

Interferon =future.Take it and feel uncomfortable but keep MS at bay,perhaps stay out of a wheelchair.feel lucky?

Steroids = on your feet now.but cant take too much high side effects. use it when you need it. Apply quality of life issue.

Maybe you can take both I don't see why not but I'm not a Dr either.

[autotech]

Gypsy,

like everyone has said take it one day at a time! Just do your best to find a way to keep going, and don't play the "what if" game, and the same with the "Why ME" game. Only adds to your stress... From here on all we can do is try and make the best of the hand we were just dealt..

[golfwidow]

[quote]Hi,
the steroids won't slow the progression of MS.

Interferon =future.Take it and feel uncomfortable but keep MS at bay,perhaps stay out of a wheelchair.feel lucky?

Steroids = on your feet now.but cant take too much high side effects. use it when you need it. Apply quality of life issue.

Maybe you can take both I don't see why not but I'm not a Dr either.[quote]
______________________________________________
Just wanted to ask you to look into the side effects of steroids........the DMD's seem to delay progression of MS.......the steroids just speed up recovery from relapses ( not sure that is the correct word) BUT I do know that use of steroids on a regular basis does come with lots of side effects....................just check it out before you depend on them totally !!!!!1

[gypsy]

Thanks everyone.
I'm still on the steroid regimen and yeah, the side effects are yucky, but some of my symptoms have eased up. The HUG is gone!!! And the optic neuritis has improved!

I go back the the neuro on 7/12 and will be starting Rebif. I'm a little concerned about the side effects of that as well.

The flu-like symptoms scare me because I have a history of febrile seizures.

I really, really want to feel better right now from this "flare-up", or whatever you call it. The doc is not sure if I will get full feeling back in my hand.

But, I also look forward to slowing the progression. If I can get through this and keep other symptoms at bay, I'll be happy.

I had a bit of a breakdown last night, crying to my husband that I'll probably end up in a wheelchair. He didmt know what to say except "It's ok, hun, lotsa people use wheelchairs." I just laughed because he sounded so ridiculous.

[Deer In Headlights]

What are you thinking having 3 kids? Don't you know that

causes that? Obviously just kidding. I have 4, one boy 5and

3 girls 7,10, and12. I was dx last Sep and have had 10

Ty injections. It took 3-4 months to get rid of the constant

headache, but it still comes to visit once in awhile. I don't

know if it's getting better or if I'm just getting used to it,

NO, I'LL NEVER GET USED TO IT. I just want to let you

know that this is a good site to go and get info.

Good Luck
Jeff