"ARE YOU SURE IT'S MS"?

All this time taking therapy, living life, being happy, seemingly satisfied with my diagnosis. Symptoms worsen and I can't help but have that thought "ARE YOU SURE IT'S MS"?
What if we are wasting time not treating the "real" problem? What if it is cancer or something else we could've caught early enough to treat? It doesn't matter how much the doctor reassures me I am on the right course of treatment, when I am having a "flare-up" there is still that tiny part of me that thinks like that. Maybe it's denial. Or just maybe......I am afraid.

Ok, so I hate that I actually was thinking like this. The fact is I feel back to my "normal" now and know this not to be true. I can say it - I do have MS and I get scared when my body doesn't do what I want.

I will read this the next time and maybe it will reassure me.

MEDICATION CHALLENGE

Figuring out how to take your medication is a bit of a challenge. This may seem textbook to physicians, but matching up a symptom to an ‘actual feeling’ of a symptom, is another story.

I remember my doctor asking what my pain level was on a scale of 1-10. I replied that it wasn’t pain; it just felt like my legs were on fire. He told me that most people would identify that as #10 pain.

I took every medication the doctors told me to, well everything except for the anti-depressant. I am not sure why, but that was difficult for me to agree to. I didn’t know how it would help, it wasn’t like it would change the fact that I couldn’t walk. After a very discouraging day and long outburst of tears to my mother, she urged me to just try. On that day, I think I would have agreed to just about anything.

The doctor prescribed Lexapro.

I have to say that adding that anti-depressant was key for me. I believe it helped me to be calmer about my situation, leading to less stress emotionally and physically. I was also prescribed Amantadine (Symmetrel) to help with the fatigue. These medications helped me so much.

I have learned which medication helps me with which symptom. My most frequent combination seems to be Neurontin and Ultram to help alleviate my most frequent symptom, a burning sensation of my lower extremities.

MY BODY WAS DIVORCING ME

I left the hospital feeling as if I was going to get better, back to “my normal”. At this point, I was very positive and quite optimistic. If I could ambulate from room to room regardless of how much rest I would need after doing so, that was progress to me.
In the hospital I was trained to administer my own daily injections of Copaxone. The initial prick, even though it didn’t hurt much, was intimidating. I would hold the needle over the injection site for quite some time before actually using it. It became quite easy in a very short while.

Copaxone is expensive (double my mortgage payment) and not covered by my insurance. After paying out-of-pocket for the first months therapy, a patient assistance program, Shared Solutions http://www.sharedsolutions.com/Home.aspx sent me an application. I was extremely excited to be accepted by their program. They have helped me with the cost of my injection therapy ever since.

At home I followed my physicians’ orders to the letter. I started an oral medication regimen consisting of Neurontin, Norflex, Ativan and Mobic.
Fatigue is crazy. If you ever had the flu or an illness that left you in bed, you can probably imagine what it's like. When you do get an illness like that, soon you feel your strength coming back and it continually progresses. This is how I thought it was going to happen. I thought after that walk around the corridor I would continually progress.

I couldn't even sit upright for long; my arms would get heavy, my back, buttocks and legs would feel numb, tingly and "burn". I could just lie in bed for hours without moving and that was what I did when my body said to. It was my body that was in charge of me now and not my brain. My body was divorcing me. 

My Anxious Beginning

In December of 2008 was my first trip to the emergency room. I was on the floor of the kitchen and couldn't move my legs, they had a burning sensation (on fire) & my heart was racing. My kids were there, I can't even begin to imagine how scared this made them. At one point I was asking them to call 911. My husband finally got home and drove me to the hospital. I had him call my parents because I was so scared I was having a heart attack.
ER treated me for anxiety and sent me home. It made me feel embarrassed and like it was all in my head. I never experienced anxiety before.
Walking became very painful; it felt like my legs were extremely heavy and “on fire”, like sand bags were being added on to my every step. My physician gave me Vicodin to see if it would give me some relief. It helped with the pain, but my legs were still getting heavier with each step and I had to rest so often throughout the day to get around.

I was then sent for an MRI of the spine that did show a protruding disc so I was sent to Physical Therapy. The films and my symptoms did not add up. Therapy seemed to worsen things and eventually I could not ambulate (walk).

I could no longer work; I stayed in bed on my side with pillows between my knees. When I had to use the rest room it was easier to crawl, so that is what I did.
My son's birthday was at this time and I was in bed for it. I tried to stand in the living room just for the singing and had to lay down by the time the candles were lit. That felt so bad.
My doctor decided to send me to the neurosurgeon to be sure my symptoms were not related to "disc protrusion". That doctor performed a complete neuro/reflex exam and found this was not to be the case. My parents took me to that appointment. Getting me there was upsetting to them. I cried the entire way in pain. The doctor kept asking why I was crying and wondered if I had experienced some traumatic event in my life that would indicate a psychological problem called PTSD (post traumatic stress disorder). He asked if I lost a child, a husband, physical abuse, etc. 

The truth was that my life had always seemed normal. I was always on-the-go. I have four boys, a full-time job and a wonderful family. I never had anyone close to me pass away, both sets of grandparents are still alive and I am almost 40, I have always considered myself quite fortunate!
What a discouraging visit! I said to my mom, "maybe it IS all in my head". My mother assured me that they just needed to figure it out.

My aunt took me to my next appointment, to the neurologist. I lay on the back seat of the van the entire way in tremendous pain. If I could have, I would've laid right on the office floor to wait.

When I got in the room I laid on the table, hoping for some answers this time. I begged the doctor to please just help me to walk again. He direct admitted me on January 22 for "probable MS". That diagnosis was scary, but glad he had a treatment plan.

An MRI of the brain showed lesions x3, the MRI of the spine looked ok and my lumbar puncture was negative. Two days after admission, I began I.V. Solu-Medrol 1 gm twice a day for 3 days. After about the third dose of that I walked the corridor. That was enough to give me hope that I could get better.