Multiple Sclerosis

I was 28 years old, married  6 years with a 3 year old daughter when first dx.  My progression has been slow and I was able to be fairly active in my familys activities.  I am 57 now and can still walk--gimpy, drive and do most things albeit differentally.  I have progressive ms and so far I do not choose to take any ms drugs.  The only thing I take is merapix for leg spasms.  I was in denial for many years and it wasn't until I quit working in 04 that I finally came to terms with my ms.  I am now on SSDI and enjoying every precious moment of life.

 LEA, I ALSO HAVE MS, LIKE YOU, EVERY DOCTOR I WENT TO PUT ME ON MEDS, FOR OTHER REASONS, I WASNT CRAZY, I KNEW IT, AND ALL THE MEDS ,MADE ME ILL,  IM ALLERGIC TO SO ,MUCH, THE HARD PART FOR ME, IS NOT BE ABLE TO GO OUT SIDE, I LOVE THE OUT DOORS AND SUN, BUT THE HEAT MAKES ME SO ILL. I STILL WALK SOME BUT USE A WALKER, I GOT ELEC WHEEL CHAIR, HUBBY THINKS I DONT NEED IT, BUT HE WILL FIND OUT IN TIME I WILL.  I MISS >>>>ME. BUT NOW ITS MY LIFE, I ALSO ASK >WHY ME>>>> I ALWAYS BEEN NICE TO OTHERS SO >WHY ME.  I HAVE TRIED TO FIND SOME ONE TO TALK ABOUT THIS WITH, CAUSE NO ONE UNDERSTANDS WHAT WE GO THRU. THANKS FOR LISTENING,

Hey Jenny, WHY ME... I can understand that question! Because I have my faith, today I can live without the answer. I used to wonder, How could a loving God do this to anyone? Now I focus on, Since I am this way, what can I do with it? I was so afraid  I would be a useless burden. I was so wrong! I'm as busy as I ever was.

What having MS has done for me is allowed me to reach out more to others. I was a prideful person. Now I have much more humility (I hope) !  In my career, I used to help others, but I never thought about how I let doing that put me in a one-up position. It was subtile, but I esteemed myself by it and I wasn't aware of that. 

In the beginning I did not know how to let others help me. I had a hard time asking. I got frustrated because others didn't do things the way I would have done them. I would try to do things myself and end up in a heap on the floor. I'm sure you've had enough experience to know the list of frustrations. Today I am so filled with gratitude! It's amazing how others want to be there for us! Sure there are the "A-Double-Scribbles" who yell at us just because we're in a wheelchair. It happens, but I don't take it on. Compared to the people who want to help, they are few and far between. I'd rather be crippled and in a wheelchair than that mean-spirited! I say a prayer for them.

Anyway, I'm just blabbing on! The real truth is the things I am learning are the virtues that count in life! Humility, gratitude, patience and faith far outweigh what I had before. Maybe when I realized this wasn't done to me, but for me things got beter.

Thanks for the topic Jesse! Thanks for the things everyone shared! Welcome Lea!

Be blessed to bless others,

pambe

Fear, Disbelief, Naw couldn't be...they just had to be wrong! And...what was I going to tell my three kids? But at least I had a name for the weird symptoms I'd been having. My GP sent me to a Neurologist for the battery of tests to see what was wrong. The last of those tests was the dreaded spinal tap...did I mention I am a big needle phobic? That was the one of course that clinched it. The day I went in to get the results of all the tests I was sitting on the edge of the exam room table and he waltzed in, patted my knee and said "well, you have MS and I'll see you in three months." And took my chart and waltzed out of the room! I waited a few mins hoping he'd come back and explain things but all I got was a nurse ushering in the next patient. My eyes were glazed over and like a zombie I left the office, found my car, started it and somehow through tears drove home. That was June of '95. And he did not see me in three months...I found a new neurologist with a much more caring bedside manner. So at 42 yrs of age I called my "daddy" and his calm voice told me to call the MS Society and get as much info as I could and boy it's a good thing I like to read! I tried Avonex and had a very bad reaction to it and then several months later tried Copaxone and had tissue necrosis...and did I mention I HATE needles?? So, I started taking a lot of herbal supplements for different symptoms. My body just didn't like drugs is all because the other worked much better. I stayed working full time until Jan of '02 and just last month left my part-time job but not because of the MS. I use a three wheel scooter to get around and my insurance kicked in for a new Power chair. Every day is a blessing. I went back to College in '03 to learn how to paint with my non-dominant left hand so I now keep myself busy with that. Keep fighting and find your passion! The key is to never give up! Candy

Jenny I am very heat sensitive but I wear an ice vest collar and wrist bands. MS has not stopped me from enjoying the outdoors. I love my power chair it gives me such freedom. Life is beautiful, even on the bad days can always find something wonderful. Good-luck. Have you ever heard of the spoon theory? It is a great way to explain what it's like to have something like this to your family and friends.

Well, my main reaction was one of relief, mainly because I had been through so much and even suspected it myself, tho I didn't want it to be, as I was working two jobs, and loved what I was doing.  

Seven and a half years ago when I was in really bad shape, falling, etc. and was sent to a doctor,  he asked me what I my symptoms, and then went to look up some things,  came back in, and said what he was suspecting was MS, ordered an MRI, blood work etc. After other things were ruled out, and I had lesions on my brain, he said he was sure it was MS, but that I needed to be seen by a Neuro, made an appointment with one in Augusta, GA.  I was unable to keep that one as Mom and my sister felt that I should be closer to them.

Ended up in Oklahoma, a Neuro was recommended in Fort Smith, AR, went to her, had the spinal tap, that came back negative, she even ordered more blood work, all that came back ok.  She went on to say to mom and I that she didn't  think that the lesions were suspicious of MS, ugh. and said they may be age related. Yeah right, I was in my early forties, and fairly healthy.  Then my vision was getting blurry, which was optic neuritis, that wasn't taken seriously, and I kept getting worse.

In November of 2002, went for several test by the SS office, found out I had Optic Nerve atrophy, wow, I thought I was going to lose my sight, in Dec. I was approved for Disability.  Went for my regular eye check in 2003, the eye doctor sent me to an Ophthalmologist, who ordered an MRI, sent me to a Neuro Ophthalmologist in Oklahoma City, I took the MRI film, they did several test, he looked at my MRI film, came back in, sat down and talked to mom and I.  He said, you do have MS, too lesions to count, wow.  He teaches at OU medical school, Neurology, Neuro surgery, etc. and treats patients with MS.

I was still angry, not at him, but at the one Neuro in Fort Smith, so it was a year later that I went back to my Eye doctor, he ordered another MRI, and made an appointment with a Neuro, of course, the same one that made me mad, so I went out to CA for a wedding, prayed about it, talked to my cousin who is  a Nurse, etc.  Came back, bit the bullet so to speak, kept my appointment, took the letter from the doctor in OKC, guess what, she looked at the MRI, and came back in, said, well, I would could do another spinal tap, but even if it came back neg. this would not change my mind, I am going to com firm it.  We talked about the Meds, and I had my mind made up on Rebif, and the rest is history. Still on Rebif, have only had two flares. 

She has a different nurse, she is awesome, and if she ever moves, I will follow right behind.   No joke, I really feel that her first nurse was the reason that nothing got back to her, and so many people left, since this new nurse, I feel that she has changed for the good.

Sorry for the long post,  but as you can see why I was relieved, even later on I did go through some anger, and tears, only because I had not been through that stage yet.  I am ok with it now, not really but I feel things could be worse. 

Take care and thanks for the great topic.

Lenora

After my heart sank into my stomach, I looked at my husband and everything goes blank from there.

 I know now that the people that I thought were my friends were not. Well, only one of them was and she got married and moved 2 hours away. The rest have stabbed me in the back.

I was talked into doing "audience participation murder myster dinner theater", by the guy who not only wrote the plays but also ran it. I was still getting used to this illness, even though my father had it, I really didn't know what to expect from it. But, I listened to Jan, and did it.

After being involved for about 2 years, and directing one show. One of the girls I'd hired for the show I'd just finished directing went to the director of the next show, her name is Ingrid. And began a little smear campaign. I had no idea. It got to where the entire cast of my show was going out after almost every performance and they were talking about me because of the little manulipultor, Jen.

Well, after I auditioned for the next show I get a call from Ingrid offering me an "under-study" part. I've been doing theatre since I was 15, for about 23 years, I don't do understudies and the person she wanted me to under-study was Jen. She then went on to tell me that [no one] in "her" cast wanted to work with me. Oh, did I mention that I thought that she and I were friends. Seeing how I had been picking her up for our rehearsals because of her DUI and never asked for gas money. She lived passed the restaurant, about 10 miles past it in another city which was 35 miles from where I lived.

I was fired because according to Jan, the guy who ran this thing, Jen and her boyfriend Mark complained that I  gave myself my MS shots infront of everyone all the time. When in reality I had only done it one time because people were curious. It was the shot-gun thingie. I don't do shots anymore. And they also claimed that I complained about being in pain all the time and they were tired of it. One night after the show I read a statement about how upsetting it was that people would say things behind my back when I thought we had an open door policy. And they turned around and told Jan that I made threatening moves towards Jen when I was reading it. Can you believe that garbage? So Jan, fired me.

Since then, I've done NO Community Theatre and not one person has called me. If it weren't for this darn disease I would have kicked Jen, Ingrid, and Marks butts. So what if my husband is a cop.

Do I sound bitter? It's because I am. My life ended. My husband and I were only married for 3 years when this disease hit. I hadn't been out of college for 2 years yet. A Culinary Degree down the drain. And this is what my poor husband is stuck with. He knows how I feel. He knows I honestly look forward to death. No, I'm not going to commit suicide. God don't like ugly.

And believe it or not I am a Christian. I talk to God all the time. I don't blame Him for my illness because it isn't God who gave it to us. God is not the author of illness. Satan is. Read your Bible, I believe it's in the Old Testament, Genesis actually. I do fuss at God from time to time, because I'd really like to be healed. But then I remember that there are people out there that are so much worse than me. The only time I had real pain was when I took the shots. My pain is from migraines. I get fatigued from the heat, which does bite. But eventually I stop complaining.

Sorry for the rambling. I've been doing that a lot today.

Well, it's 3:14 in the am, I think I'd better take some Ambien and go to sleep. Otherwise I'll be up for the rest of the night.

I hope some of what I said made some sense. And no, I don't wish any of those people dead. At least, not since I became a Christian. I am doing my best to turn it over to God. Please pray that I'm able too. The pain that I carry from all of that is literally a private hell.

God Bless