Last post Tue, Sep 02 2008 2:48 PM by scrambledbrain57. 28 replies.
I was disgnosed in 79 and totally scared witless. The only answers I got is with questions. There was not much known about ms then and no meds either. I was told to go ahead and live my life, I did as best I could.
Hi Jesse,
At first I was numb really, then I was relieved to have a name that belongs to the symptoms that I had been experiencing. Actually they were looking for Lupus when they found the lesions on my brain and diagnosed me with MS. I guess I didn't really take it hard or anything because I was already handling Full Body RSD, Fibromyalgia, and Osteoporosis so having one more on the list really didn't make that much of a difference to me....if you know what I mean. lol.
How are you handling your MS now? Are you in a wheelchair full time now? Where did they find your lesions when they diagnosed you? How old were you when you were diagnosed?
I am sure you are living a wonderful life and handling things quite well now, aren't you? I'm sure you have your moments, like we all do...lol, but for the most part I get a feeling that you are doing very well. I could be wrong though, I don't know....just a feeling. =)
~Take Care of YOU!!~
Many Blessings,Coach Marla
I'm Lisa Catherine. I found out about my MS in 1992 and was scared to tears, happy I wasn't just losing my mind, and it turned into an anger I'd never had before. I cried a lot and then learned all I could. Even in 92 there wasn't much they could do for MS yet so I was told the same thing, live your life keep your body cool if you can't, that was a known by then, and eat well. Once they found medicine to help it turned out I'm allergic to steroids, so that was out of the question and so when I have a flair up I really am wiped out until it passes.
I'm in an elct. wheelchair now, however that's from a surgery gone bad on my back... I used a scooter the past few years before the wheelchair, walking became a bit scary for everyone around me who were so worried I would fall and get hurt... I'm sure you know that feeling !! I think family worry more about me nowadays then I worry about myself. I try to keep cool, I live in Wyoming, where the winters are long and we have windown a/c.
How are YOU doing with your illness and are you coping okay ?? Do you work ?? I went on SSI when I was 32, I do work, however it's as a lay Sister of St. Benedict, and well, we don't get paid... however it is my joy and my passion to do what I can in this work and helping others fills me in so many ways.
Where did you grow up ?? Share as you feel ready !! Blessings, Lisa Catherine
Right after 9/11 I started having trouble walking. I was going to work and hanging on to walls with my fingernails to keep from falling. I had a lot of pain. Because I had just changed jobs I was waiting for my new insurance to kick in. When it did I went to my osteopath who cracked my back and said, Come back in 2 weeks.
Two weeks?! I couldn't believe it! I made an immediate appointment with a surgeon who thought I had a herneated cervical disc and would need immediate surgery. He got me in for an MRI of my neck that day. As he examined my films, he pulled the cervical collar off my neck and said, Your neck isn't the problem. You either have undiagnosed syphilis or MS.
I, of course exclaimed, No and no!!!
He sent me to the neurologist next door who took one look at me and had his nurse help me into a wheelchair. She rolled me accross the street and they admitted me into the hospital then and there. The following day an MRI of my brain an a spinal tap, I didn't even feel, revealed the diagnoses of MS.
I was devistated. I could hardly believe it! You see, my brother had MS. He had his first symptoms at age 17, diagnosis at age 24 and he was dead by age 30. I took care of him at home until he died. He had Primary Progressive MS. He was a quadro and it was very bad. That was in the 1960s.
Fast forward: Here I am being diagnosed with MS at age 51 almost 30 years later! I never had any other recognizable symptoms. No optic neuritis, no numbness or tingling, no anything but terrible back pain after a teenager failed to yeald right of way and totalled my car and my back. Then 4 years later the walking problem...
To say I was dumbfounded is an understatement. I was totally blown away! Thoughts raced around in my muddled head, How can my parents go through this again?! How long before I'll be as bad as my brother? Will I ever go into remission? Will I be able to work and care for myself? How soon will I have to commit suicide before I become a burden to my family?! What the heck is God doing and why?!
Now, six years later, I have the answers to some of those questions. I did go into remission and I did walk again. I was able to work a little while longer and then had a big relapse. I decided it was time for the suicide plan. My brother had said, I should have killed myself when I still had the chance. Now I can't even do that.
I was not going to miss my opportunity before it was too late, so I called my Mom to say good-bye. I was just sure she would approve of my idea. MS can make you depressed and mess with your ability to think rationally. Well, she called my doctor. He talked me out of my plan and made me promise to check in to the hospital psyche ward. As I lay in the psyche ward I lost all feeling and ability from my waist down. I knew my life had changed forever. I would not be going back to work in the feild that I loved so well and had worked in for so long. I lay there and asked the Lord, What is it you want of me? I thought I was doing Your Will! What ever can I do like this?! I'll be useless and a burden. How can I ever serve You in this condition?!
I lay there feeling like a beached whale. I was deep in self-pity, anger and fear. I should not have let them talk me out of suicide! Jesus was with me though. His Holy Spirit filled me with comfort and love. I said, Lord I do not know what You want from me. I don't understand this at all, but whatever it is You want me to do, I'll do it. If You want me to live like this, I will. My body, my spirit, my mind and my soul are yours Jesus. Your Will be done not mine.
A sense of peace came over me and as my life changed, I embraced it.
pambe
Hi Lea, I see this is your first post. Welcome to Disaboom. Unfortunate that it took that long to find the answer. The medical community and health insurance companies can be terribly disappointing.
Hi Pambe,
Wow! From the very beginning I observed your joyful, hopeful spirit. Now I know why. Thank God for the intervention while you were down in the pits, He lifted you up and out.
Sherry
Hi Jesse79 and welcome to Disaboom. I don't have MS but one neurologist ordered a brain MRI because I had the early symptoms. Results were normal. I still have all those symptoms. The second neuro doc did a nerve conduction test and an EMG which had normal results. He told me, "I can do nothing else for you". I wondered if he thought I was faking symptoms or something. I have ddd, djd and stenosis, RA and Fibro. I have a really messed up spine and 7 herniated discs which I suspect could cause all the nerve pain, numbness, tingling, balance problems and crawling sensations. Oh and deep pain in my eyes, or eye muscles. Anyhow, your first post started an interesting thread.
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,
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
