Wednesday, March 07, 2007

The dreaded diagnosis....

Often in life...when one huge obsticle is removed, another one comes along to take it's place. This is what happened to me. Gotta love challenges. ;)

Last September 3rd, when DH and I were getting ready to leave for a super fun vacation to South Dakota to see Mt. Rushmore for the first time. I woke up in the morning not super excited and rushing around getting ready for our big trip, but very concerned. My left leg was completely numb from my knee down. At first I thought maybe I slept on it wrong. I tried to shake it off and just get ready to go. In the shower I could not feel the water on my leg. I couldn't feel the heat of the water or the drops hitting my leg. I could feel the texture of the tile floor on the bottom of my foot. I could feel nothing. When I got out of the shower I pushed my sharp fingernail deep into my leg, this should have hurt...yet..I felt nothing. I could see the mark it left on my leg...but it felt more like a gentle dull push...not a sharp painful prick.

When I got out of the bathroom I decided to tell DH what was going on because I was getting very concerned. Nothing like this has ever happened to me before. He down played it, but I could see the concern in his face. We decided that this was just a fluke, it would go away and why ruin a long planned vacation because of it.

So we went.....and it was fun...but the worry was starting to rise as the numbness rose up my leg. By mid afternoon the numbness was up to my thigh. I could not figure out what was happening to me. It was so strange....and very scary. But...I would not let it ruin our vacation....even though it was trying awefuly hard. ;)

By the time I when to bed that night the numbness was just below my bottom. DH and I figured maybe I had a pinched nerve or slept on it wrong and it would be better in the morning. DH massaged my back and hoped that would help.

The next morning was the scariest of all. I woke up and the numbness had traveled to the middle of my back. My whole leg, genitals and trunk were all numb on the left side. I was completely freaked out now. DH still was thinking it was a pinched nerve and to just block it out. I couldn't...I was so scared...I need to go to a doctor. So, in a strange state....in a strange town...we looked for an emergency room. We traveled 50 miles to a hospital in South Dakota and I saw a wonderful doctor who was very nice. He quickly ruled out sciatica (what DH and I were hoping it was) because it had traveled up my back. He said it looked like I might have had a stroke, but I was so young. He did a cat scan, and fortunately, it was negative. He then said it looks like it might be Multiple Sclerosis, but I would need to have further testing by my regular physician to make sure. He said that there was nothing more they could do for me in the emergency room...to enjoy the rest of my vacation and go see my doctor as soon as I get home. So we did....well...at least we tried to enjoy the rest of the vacation. :)

When I got home I went to see my regular doctor who didn't really know what it was, but also mentioned Multiple Sclerosis...even though I didn't tell her about what the other doctor had said. She did an MRI and I would have to wait a couple of days for the results.

Two days later she called my husband, she left her cell phone with him and told him to have me call her as soon as possible...I asked DH if he thought it was good news...he said well...she left her cell phone..doctors don't usually do that if it's good news..she really want you to get a hold of her. I was hoping DH was wrong...

He wasn't.....

When I called her back, she said that the MRI found a leision on my spine which is what was causing the numbness. This could be caused by two things, either a tumor or Multiple Sclerosis. *Sigh* I didn't know which one to hope for.....she said I should go see a specialist, a neurologist. So, the next day I met my wonderful neurologist.

She looked at my MRI and said she wanted to do more testing...but was 99% positive it was MS. She showed me a pamphlet on MS and it had a picture of an MRI with a spine lesion, and it could have been mine. *double sigh*

Now I was officially scared, she wanted me to go in to get a brain MRI, to see if there were any other lesions. She gave me a bunch of info on MS, and the whole time I thought, why am I getting all of this info on MS...I don't have MS...all of these doctors are wrong. Surely, I don't feel like I have a disease...I just have some numbness...it will go away. It has to go away...I am young..I have so much to do...I can't be bogged down by this disease. Not now...can't it just come back later?

So, the brain MRI came back with lesions...very small ones...but lesions. So it was confirmed. I have MS. The neurologist was very aggressive with her treatment. She started me on it immediately. I had to get a pic line put in (this was not fun) It's like an IV that taps in to your artery (I think, it's like a super duper IV, that can stay in longer than a regular IV). So, then I had to have 5 IV steroid treatments, that was not fun. Then, she started me in a weekly injection medication called Rebif. This medication is self injected 3 times a week....for the rest of my life...to keep the diease at bay. There is no cure for MS....but there are treatments that are supposed to slow it's progress...so hopefully I will have a "normal" life longer.

Since my diagnosis, I have had one more flair up. It happened in January. This time it was numbness on my right side...which even after treatment is still there. Luckily, after the treatment for the numbness on my left side, it is completely gone. So I am hoping the right side will be gone soon too. I have my 6 month check in April...I will be getting more MRI's done them. I am hoping that there are no new lesions. In MS, there are two different types of lesions. white (active) lesions which do not represent permanent nerve damage and black (dormant) lesions which represent permanent damage. Luckily, when she did the MRI before, I only had white lesions. Hopefully the one in April will show the same...and no new lesions.

Anyways, that the dreaded diagnosis, MS. But, MS these days isn't what it was in the past. There are lots of treatment options and things one can do with diet and alternative medicine to slow the progression of the disease. The people you see in wheel chairs, are unfortunately the ones that did not have treatment available to them. If you were diagnosed with MS before 1998, the basically gave you the diagnosis and sent you on your way...they could do very little for you. So I feel blesses that there is so much hope now for people with the disease. I am also meeting more mobile people with the disease. It's good to see...because when I was first diagnosed I was getting ready to go out a shop for wheel chairs and sell our house and move to a single level home...now...I am going to live my live the way I always have (well...trying to keep stress at bay, watching my diet and take better care of myself (which I should be doing regardless).

1 comment:

  1. Oh my!! I am so sorry to hear that!! I hope it stays in remission type thing for a long time!

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