Sunday, June 17, 2007

To know me.

The year after I had my daughter in 1986...is when I started noticing problems. I had lived with epilepsy all my life, so that wasn't the case here. I had been diagnosed with that at the age of 8 months with that.
Backing up a bit here...I got married to the man I live with now in 1985.
What I was experiencing was falling alot. My legs would just fall from underneath me. Since I had epilepsy, I had a neurologist all my life as well. I would tell him these things. Experiencing alot of drowsiness and dizziness as well. I had my son and a baby girl to take care of and 2 jobs. I was concerned.
A few years went by, I was still having these falls. I was then having them so often and so bad, I would break bones. My feet, ankles, and constantly on crutches. I was always tired. My doctor would tell me that it was all in my head. I changed doctors.
I then started having problems with my eyes. They would hurt. Problems with double vision and blurriness. I was sent to an eye specialist in 1994. At that time...he seen in both eyes something wrong. He then sent me to another neurologist. He wanted him to test me for ms. He seen damage behind both of them, which he told me that was odd.
All I knew was I was having alot of problems and no one was taking me seriously!
I went to see this new neurologist. Again, he told me it was all in my head. My problems were getting worse. My legs were worse. My left leg would sort of drag at times on my bad days. The pains were getting to the point to where I would literally scream.
I still had to live my life, go to work and take care of my children because it was "all in my head."
I live with an alcoholic and he also knows what I have gone through. He has witnessed everything!
I am also a survivor of child abuse. I have over come all of that as well. But I guess old patterns never die. My big mistake!
I finally was able to get my neurologist to take me serious about my sleep. He then sent me to a sleep specialist. It showed that I have 3 sleep disorders. I told him about whatI was going through and the pains I was having. He was the only doctor that listened to me! He ordered an MRI for me.
Then, my neurologist finally took me serioulsy. The MRI showed something. He then ordered all kinds of testings that took me 3 years to take and have the results back. He found that I had fibromyalgia. He also told me that there was 2 other tests that came back negative, but never gave me the results! The one test was the EMG test that I had this March. It was also negative as well. It proved that I did have ms.
This neurologist that diagnosed me with the fibro. which I do have, told me not to go back to him unless I go to another neurologist and he needs my records! I did NOT like him one bit. That made no sense what so ever. He is the one that told me all these years that it was all in my head! If and only if he would have listened to me for once....my body wouldn't be as advanced as it is to this very day!
My new neurologist that I really like...that has given me the diagnosis of ms and is now working with me, is getting those very records.
Now....one of my points is this....as I stated at the very beginging, and how long I've been having these very same things accuring. Ok? And...I've been living with the very same people as well. Wouldn't you think that at least ONE of these very same people would at least remember what I'm going through? 2 of them do....my kids. How about that. And I don't have to reming them every single day of my life. I don't have to explain to them the whys and the whats every single day. They already know and remember. No, I do not have no place else to go. If I did I would  be there right now. I do not qualify for any disabled living places because of my age. No...I don't have any family members. Right now, things are calm. Thank you God! I've prayed so very hard...and I thank each and everyone of you for all of your prayers too! Thank you!



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13 comments:

Anonymous said...

Im glad things are calm and Im glad you have some who care and know

Anonymous said...

Lisa,
Can you explain (email me maybe?) how a negative EMG test proved that you had MS?   Thanks!
Glad things are calmer for you now too!

Nancy

Anonymous said...

Hi Lisa,

It's Angella again, and I have to tell you that my prayers are with you 100% for all that you are going through both with the doctors, as well as the man in your life. I myself have massive cluster migranes, as well as I am Bipolar, and I too have been the victim of physical, mental and emotional abuse at the hands of both family and stranger, as well as being raped. as far as the doctors go, I haave been told for many years that these migranes that I have are all in my head or caused by stress, and I have had every known test, and seen many different doctors and specialists, all off and on since I was 11, and I finally found some hope at the U of M hospital here in michigan. I know what you are feeling about the doctors, and how it makes you feel, and that we might not have some of the severeity in the issues that we have if someone had only listened to us the first time. I know that what I am going through does not hold a candle to what you are dealing with, but I do undrestand the frustration both with the doctors as well as the others in our lives. I still don'r have a whole lot of support, because people think that I am making it up...it is such crap!!!! However I have grown accustomed to dealing with things on my own, because that is the story of my life, and the way that I have always had to be..
 I hope that this year will bring you more hope and support, and I will be here reading your journal, because I feel the need to give support to people that I feel deserve someone in their corner..despite all the things in my own life, I found the way to go to school, because I wanted to help people cope with the emptiness from the people they love not always being their for support. I finally graduated from college in 2004 with a degree in social work...it is a long road to get to your dreams, nut as long as we fight for what we want it is priceless...
Talk to you again soon, and I will keep you in my thoughts and prayers..

Anonymous said...

I know that you have waited a long time for the calm. I am just so glad that you have it. I just know that everything will work out for you.
Kelli
http://journals.aol.com/kamdghwmw/noonmom

Anonymous said...

I'm glad things are calm now.  I've had docs tell me my problems were all in my head.  I got rid of them.  NOW......my brother and his wife are saying the same thing because his wife is a drama queen & I told them I didn't want her in my life.  LONG STORY!  Everything I have has been proven by tests or surgery except migraines.  No test to prove that.  I've have seizures since 1987 after being in an accident with a semi-truck which I suffered multiple injuries including to my head.  Though the EEG's, CAT scans, & MRI's have always been normal, I will have seizures unless I'm on BRAND Dilantin.  Twice, I have been weaned off the Dilantin and within 2-3 mos., I would have seizures.  I tried the generic but I still had seizures so I went on brand and I haven't had a seizure in 7 yrs. but I will have to take the medicine the rest of my life.  I'm glad you found a neurologist you like.  I'm confused......were you diagnosed with MS by EMG or not?  Praying for you everyday my friend.
Hugs,
D

Anonymous said...

have a good week:)

Deb

Anonymous said...

I do not know what to say here but i will let you know your in my thoughts and prayers daily.
love and hugs
Katie

Anonymous said...

I didn't realize you'd been having symptoms your whole adult life. I'm glad things are calm now.
Pam

Anonymous said...

Well, that is a summary of some very hard years. And they're not getting any easier. Hang on in there, we're always there for you.

Anonymous said...

I don't know what to suggest.  There are a lot of people in this complex I am sure are as young as you are with varying disabilities.   This is a HUD complex.  As long as you are disabled and MS would qualify you for that you should be able to get into a place like this, but if you are not able to live on your own then that would be out.  I have not investigated other possibilities which might be termed assisted living which is a step beyond is disability.  Some leave here to go into these kind of places.  I sounds like the man who calls his journal Caregivingly yours has his wife with MS in another facility now.  I just went to his journal and read that he brings her home but takes her back.  Once my mother got into a wheel chair then she qualified for a care center.  It sounds like you are in a very difficult situation that would be hard for a well woman to solve let alone one as disabled as you are becoming. Some mates, both men and women, don't respond well when something goes seriously wrong with the other partner.  Some rise to the occasion magnificently  I found living alone with my kids was best when I was down.  They were more protective of me than anyone.  When they all left home, then I moved in here where I plan to say until I either die or need to go to another facility.  Doc helps me a lot and I help him.  But we do have separate apts. to cut down on irritability.  Just have to keep searching for a solution, and one that your partner will agree to  Sounds like he blows hot then cold, very cold.  So difficult.  He is disabled, too, in a worse way.  Gerry

Anonymous said...

Lisa, Lisa, oh my Gosh what you have lived through.  You've been to hell and back.  You are always in my prayers, you are such a nice person, you deserve so much more in life.  But from your adversity, you have survived.  Yes, you are a survivor.  You are brave.  I am proud to know you, honored, actually. Merry

Anonymous said...

(((((((Lisa))))))))))) sorry I'm just now getting to this entry. I am so behind in alerts. You have been through so muc in your life. I didn't know you have dealt with this so long. I am so sorry. I wish I could make things better for you. I can do one thing, and that is pray that you find some peace and the doctors can help you.
Love,
Cindy

Anonymous said...

Awwwwwwww Lisa you have been through so much and are still an inspiration to many, Hugs Lisa