First Major Attack

Three months went by, my first anniversary approached. One day i noticed my feet were asleep and no amount of wiggling would wake them up. The next day, my legs were numb/tingly from the knees down. The next day, from the waist down. It was like i was being slowing dipped into prickley water, LOL.

I of course started to get scared, but still just thought i had a pinched nerve, altho i knew from research that numbness on both sides of the body was NOT good. I went to my MD, and had MRIs done.

By the end of the week, i was "asleep" from the chest down, and then it started to spread down my arms to my hands. Until this point, it was just tingly 'fallen asleep' prickles, but then it got very painful. I was terrified, i could not use my hands, my arms were like wet spaghetti, i could not use them effectively to do anything, and the pain was like when you chew on aluminum foil (if you have fillings), only in my arms, if that makes sense. Touching my sweet baby's soft skin was like dragging my hands across sharp, jagged glass. It was excruciating. This was all on my first mother's day, by the way. No one from either side of the family called or even gave me a stupid card either, LOL , altho i think my husband said happy mother's day, cautiously, haha, as he knew i was in a lot of pain.

So the next day, the Monday after Mother's day, i desperately called my MD AGAIN for test results. She called me back and said,

"Jennifer, it's not good. It's MS"

YIKES! Not the greatest way to deliver the news, but what else could she say? But i just fell apart. My newborn daughter was lying on the sofa looking at me, sobbing, i can still see her concerned face, staring at me, scared. the first thing i asked my MD was, "Will i have to wean?" and she said i probably would, as the drugs would be major. I had a hundred questions, none of which she could answer, so i headed back to my neurologist.

I was terrified, i called my husband, and he rushed home from work. I was just devastated, i remembered hearing Montel Williams had MS, and at that time I thought, "oh , how horrible, i bet that will happen to me" and sure enough it did. I didn't even know much about it, except that they say you can be blind one week, in a wheelchair the next. That's about right too, LOL. Well, to a point.

I went to that original neuro, the one that zapped me, and we talked, about medication, breast feeding, all that. I think he was OK with me breastfeeding on medication. (I had researched it right away and saw promising data on continuing).

My mother and aunt work in the medical field , and they jumped in to find the best neuorologist in the area, who fortunately turned out to be a leading MS doctor. He is also the sweetest man I hav eever had the pleasure of meeting. I chose him as my neurologist and continued seeing him. He looked at the data i collected concerning breastfeeding and agreed that as long as i was OK with it, he was too. So, i planned on starting Multiple Sclerosis meds soon. I chose Copaxone

First I was scheduled to have 3 days of at-home nurse administered IV steroids, to help me heal, as i was in such bad shape. I had the ttypical 1000 mg of solumedrol i believe, administered via IV, over the course of an hour, once a day for 3 days. The nurse starts the IV, helps with the first administration and then taps it off. I plug into the IV drip myself the next 2 days. I could not nurse my child until 4 hours after the drip finished, but compared to everything else, that was pretty minimal. I was prepared - i purchased a breast pump and pumped milk for her to have during the afternoon. After the 3 days, i went back to nursing as usual, even when i started my MS meds.

The high dose of steroids helps the damage to heal fast, but it does not make one heal any better than they would without it. It just cuts the healing time a BUNCH. Thank goodness, becuase all i could do was lie in bed, crying from the pain. I could not pick up my child, (altho i could hold her in my sling if someone handed her to me) I could not take care of myself or feed myself. But after about a month, it got much better. I could use my hands, altho the discomfort was EXTREME. It was like holding onto a jackhammer for a long time, and the jarring, buzzing sensations that it brings.

For a long time, i could not do anything with my hair, i just coudl not use my hands. Putting my hair in a ponytail these days is like an amazing feat to me :) Picking my nose is like a club med vacation :)

But the most awful thing back then was not being able to lift my baby. I could hold her if she were handed to me, but people would constantly come up to me and take her away from me "Oh you poor thing, let me take that baby from you!" And I did not have the strength or dexterity to hold onto here, so they just plucked her from me.

It sounds odd, I could hold her, but not stop them from taking her? -I should not say that i did not have the strength - I was always strong, but i had no feeling in my hands and arms, i almost wouldnt even KNOW if i were holding her or not, so if they took her away, i couldn't tell, except that obviously i SAW them doing it. i could flail around with my dead spaghetti arms, but i could not grab her again. It was a very depressing time. I was so helpless, and i felt taken advantage of (everyone likes to hold a new baby, and now was their chance.) I am still angry about those days.

Long story short, FLASH forward, it took about 3 years, and my hands are still scratchy and clumsy, but i can do anything i need to do, except maybe read my mother's braille books. I realized how much feeling had finally came back about a year ago, when a light switch felt funny to me, and i looked at it, and saw it had dried paint on it, something i never noticed before. I told my husband about it, and instead of being happy, he was so sad for me, HAHA. But I can sew, turn pages, write, type (sort of) and i can ALMOST feel the difference betwen wet and dry (very important when doing cloth diapers haha)

I went from the broken glass hands to feeling like i was doing stuff with tongs, to feeling like i was doing stuff while wearing big rubber gloves, to feeling like my hand have dried crazy glue on them, if that makes sense.

First symptoms & early diagnosis

I first had definite MS symptoms in May 2003, i had just gotten married and while i didnt know it at the time, was abotu 10 days pregnant haha. my face went numb & tingley, from my mouth to my eye, right side. I thought i was having some sort of dental problem, like a tooth nerve was mess up. Doctor had no idea, and sent me to a neurologist. bu tthis time i knew i was pregnant, so i just figured it was a side effect of the pregnancy, like bells Palsy or something. Or relaxin from the pregnancy causing my nerves to relax and pinch or something. The neurologist mentioned MS and i promptly disregarded him. Since i was pregnant, they couldn't do many tests, certainly not an MRI. But he did hook electrode up to my head and zap me with electric current through my eyes, to my brain, to see how long the message took to return. I had to lie on a table and YES i flew up into the air, like those medical shows, where someone yells "CLEAR!" and zaps the body. Yes, it hurt, hahahahaha.

So i left that appt with a 'wait and see' recommendation, since there was nothing else to do. eventually, the facial numbness faded, but let me tell you IT WAS SO ANNOYING to the point of causing depression. Facial pain is very upsetting, don't ever disregard it if you know someone has it. Maybe it is becuase it is so close to your brain, LOL. Anyway, it faded and so did any concern.

I continued my pregnancy and had a normal, wonderulf, painful birth a week early, and my first child, a girl, was born in Februaru 2004. Business as usual, happily breastfed and learned to be a mother.

MS Blog startup

I really am supposed to be keeping track of symptoms for doctor updates, so what better way than here. PLus, it might help someone newly diagnosed, so by all means feel free to lurk.