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Multiple Sclerosis Success Story

  
  
  

submitted by Cindy B. of Maryville, MO

I was diagnosed with multiple sclerosis (MS) in October 2002.  At that time, Dr. Rowe said it appeared that I have had MS for about 20 years.  Some people like me are relieved when we are given the diagnosis of MS.  I was shocked, but relieved at the same time.  I finally found a doctor who "listened" and saw how I was feeling.  For 20 plus years I was misdiagnosed.  I felt like a guinea pig.

Various doctors told me I was just depressed.  I felt like my symptoms were all in my head.  I became angry and irritable.  I had been diagnosed with Chronic Fatigue Syndrome; Lyme disease; fibromyalgia; inner ear infection because of balance problems; arthritis, depression and the list goes on.  Who wouldn't be depressed?! 

I was so relieved to find out what and why I wasn't feeling well.  I eventually had to stop working as an LPN because of my poor balance, severe weakness and fatigue.  I had to give up driving because of optic neuritis and poor peripheral vision.  I had severe headaches and my body hurt so much it would put me in tears.  I began falling more frequently, had tremors and began dropping things.  I also had to give up babysitting. 

My ophthalmologist questioned me..."Has anyone mentioned you might have MS?"  He referred me to my neurologist, Dr. Rowe.

After I was diagnosed, I was put on Avonex and physical therapy.  I'm happy to say, I've been able to volunteer at a school for 20 years now and I love it.  They are very supportive and understanding when I am sick with a relapse or just don't feel good.  I have a hard time knowing when I've done enough, and over done,until my body tells me so. 

I would like to suggest to those of us who have MS to try some type of volunteer work, if at all possible.  We don't have to let MS stop us from being a useful and worthwhile person.

Even though my MS has been progressing, I still work at school.  I am having to cut back.  Some days, or weeks, I can't go at all.  I feel that volunteering gives me a sense of purpose.  What works for one person doesn't always work for other.

I owe a big Thank You to my neurologist, Dr. Rowe and his team for all they continue to do for me.  Because of them and medications, I am able to keep going - just one day, one hour at a time.  Don't give up!!

Cindy also provided helpful information about transportation for those on Medicaid.  In Missouri, contact Logisticare at 1-866-269-5927  http://www.logisticare.com/home.asp Before you call, have the following information ready:
Your name 
Your address 
Your Medicaid number 
Date & time of your appointment 
Doctor's name & type of doctor
Doctor's address and phone number
  
There is a $2.00 copay.  Driver's cannot ask you for the co-pay if you can't pay it.  Call at least three business days in ahead.  Logisticare will set you up with the transportation company closest to you.  Driver will call you the day before your trip to let you know who is picking you up and what time they will pick you up.

If you have someone that can take you to your appointment, call Logisticare BEFORE the appointment to get gas reimbursement.  They will send you a form to fill out so that you can reimburse your driver for gas.


Comments

The list of symptoms is much like my own but I found a course of antibiotics improved my symptoms and eventually led to me being diagnosed  
 
with Lyme Disease.  
 
 
 
With all the controversy over diagnosis and treatment of Lyme Disease most doctors believe the blood tests to be nearly 100% when there is much  
 
research that shows blood tests can miss 50% of patients.  
 
Below is a link into presentations to the recent review panel from ILADS doctors contesting the current IDSA 2006 Lyme Disease Guidelines. 
 
http://www.ilads.org/lyme_disease/lyme_slides.html 
 
Steven Phillips presents 25 studies on Seronegativity and Persistent infection. 
 
 
 
Many Lyme disease patients I have been in touch with have MS type symptoms and some are diagnosed with MS but get better on antibiotics, when their doctors realise it was in fact Lyme Disease.  
 
 
 
That is not to say all MS patients have Lyme but because of the controversy, how many are properly assessed for it.  
 
 
 
There have been studies of MS patients showing some respond to antibiotic  
 
treatment, 
 
http://www.lymeinfo.net/multiplesclerosis.html 
 
yet how many patients are even tried on antibiotics long term before given other far more aggressive therapies.  
 
 
 
For more information on Lyme Disease seewww.ilads.org  
 
Posted @ Friday, February 12, 2010 4:32 PM by Joanne Drayson
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