Multiple Sclerosis

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

Hi Jesse,

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

 

 

 

I was relieved. For so long doctors were telling me nothing was wrong. I thought I was either crazy or had a terminal disease and they were missing it. Well it all came down to them not wanting to spend money to run any tests. I have Kaiser ins. It took 13 years before they let me see a neurologist and it took him 5 in to tell me he thought it was MS and then a couple weeks of various tests which confirmed it. He was shocked at how long it took them to refer me to him. He made me feel so much better. I was not insane and I wasn't dying. Unfortunatly I missed out on valuable years of injections which may have slowed the progression. By the time I got to see him I could no longer walk on my own and now am in a power wheelchair. I have horrible spasams that at times are hard to control. I am grateful I do not have something worse yet saddened that so much time I thought I was nuts or dying...I could have been getting help and maybe today I could have still been able to walk.

Pambe......that's a beautiful story of acceptance and survival........with meaning and purpose. Thank you so much for sharing it with us................much peace and love to you............Norma

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.

 

Sherry