Hot Legs' Story

[Momzilla]

My symptoms started in August of 2004.  I was at work and my left hand started going numb.  It was like it was asleep and no matter what I did it would'nt wake up.  A few days later it was all the way up my arm.  Within about 2 weeks it was in both hands and arms.  I went to a workmans comp doc. who thought I might have carpel tunnel.  After a nerve conduction test that was ruled out.  He sent me to a neurologist who ran several test  (which all came back negative) and decided it was all in my head.  A few weeks later it was like a band moving down my body.  First my stomach, hips, thighs, shins, and feet.  Everything went numb and tingely.  I then went to my family doctor who ran several test and found nothing, so he sent me to another neurologist.  She found 1 lesions in the brain and several which where called insignificant also in the brain and from the 2nd to the 6th vert. in the neck was complete demyelination.  She was pretty sure it was MS but would not diagnose me.  By then I was in some pretty severe pain.  The only treatment I received was pain pills and anti-seizure medication for the tremorsl.   I was finally layed off after my short term disability ran out.  I could not afford to pay for the insurance myself so I then had no insurance.  My neurologist would no longer see me.

A year went by and my family doctor was great.  He helped all he could and kept my pain medicine perscribed for me.   I called Mayo Clinic and they set me up an appointment and told me not to worry about no insurance that they would work out a payment plan.  When we got there it was just the opposite.  We had to borrow about $12,000.00 or more to pay for the test.  We also had to pick and choose which test where most important because we could'nt afford all of them.  To make it short we left there with no diagnosis and no money.

Finally in June of 2007 my medicare started.  I had an appointment on June 1st with a neurologist.  We went over there with every test, film, and medical record that we could get our hands on.  After a couple of weeks for her to go over everything and get new MRI's to compare plus order a couple of more test, she diagnosed me with MS.  She has spent the last 2 weeks trying to get a hold of my doc. from Mayo to see if he could help her in determing which medication might be best for me to go on.  Just like I thought he will not call her back.  I knew he would'nt because my family doc. had tried many times to no advail.

I am now on a 6 day round of steroids and will be starting either avonex or rebif within the next couple of weeks.

It has been the hardest 3 to 4 years I have ever had to deal with.  I am now in a wheelchair and in constant pain.  I have seizures on accasion, no bladder control what so ever, almost no mobility from the waist down, loss of memory, constant tingeling and weakness in both hands, slurred speech, no sexual functions, depression, anxiety, and a list of other things.

I am 42 years old and I have been married to the most wonderful man in the world for 25 years.  We have 3 children who are 24, 23, and 13.  Plus 4 grandchildren.  Three and a half years ago I was running, fishing, playing ball, and a very athletic person until this hit.

I'm not bitter.  God has a reason for everything and I may never know what that reason is but I will still live my life for him.  I do pray that when I start my treatment and rehab that someday I will be up on my feet again.  It just takes alot of prayer.

Thank you for listening to me.

Grannyhotwheels  (Carol)

[Momzilla]

Of course this is CAROL's continuing saga.  I posted it because many were interested due to all that has happened to her recently.  She is such an inspiration to us all!

I know it is difficult for her to type answers to everyone's question's so I wanted to post her original diagnosis.

She just never stops!!!!!

Keep on keepin' on, Hot Legs!

Zilla*

[T-lynn]

Glad your up and walking,the leg braces will help,I know they are not the most attractive but they provide support.I've worn one on my right leg for a year plus and after my last attack now one on the left leg.I only use my cane for long distant walking shopping and so forth.

Determination is what gets us through most of this and I hope you are running in the next few weeks.

[T-lynn]

Your story is all to familiar,I had ON and transverse myelititis in 1998,didn't know this until I got medical records from the surgeon a year ago.I didn't walk for 2 years after that back surgery.There is hope.I had little ones at that time and no family help,lived in a different state.

If I would of been treated back then there might of been a better out come,this disease progresses differently in all of us.Stay positive.I really get disgusted with defective neuro's that don't know what the heck they are doing.

Power of prayer is the best medicine.You keep the faith you'll be walking again.

[grannyhotwheels]

Here's just a couple of more things to bring it up to date:

Around the first of August my doctor convinced me to try Low Dose Naltrexone.
After reading the post from others who where on it I descided it was for me.  To make a long story short my doc. never explained to me that I would have to be weaned off of my pain meds before starting it.  She just called the scrip in and told me to start it on Tuesday night.  I asked if there was anything special I should do while taking this and she said no that there where no side effects for LDN.  Well once I took it is counteracted or did something with my other meds, and I almost died.  I was in ICU for 3 days.  It caused all kinds of problems not to mention to most horrible pain I have ever felt and I have had 3 children naturally.

Once I finally got through all of that my family doc. started me on physical therapy.  I go 3 times a week and it was going great until I woke up a week or so ago and could'nt move my right side.  It was completely paralyzed.  I was rushed to the hospital with what I already knew was a stroke.  Thank God it was not near as severe as I first thought.  It's a little slow going but I'm slowely getting the use of everything back.  Thanks to a hard working therapist that really pushes me.  

Here's the good news the other day he put braces on both legs and low and behold I was up and walking.  Of course I had to use a walker but I still feel 10 feet tall everytime I stand up.  I'm doing pretty good with it.  I am walking all over my house and soon I'll be able to go places with just the walker.  Then I pray eventually a cane.  

The only drawback is it puts me in some pretty bad pain but determination has to have at least one drawback.  Right?  

Well that pretty much gets me up to today.  Oh yeah one more thing that really bothers me is that my doctor I was seeing the perscribed the LDN has yet to call me and see if I lived or died.  I was supposed to have an appointment with her last week but instead I called and asked for my records to be sent here.

I can't wait to see what happens in my life next.  One thing is for sure and that's that it's never boring.  I may be running in a couple of weeks.lol

God Bless you All,
Carol