My options

Had my first neurology appointment today as a MS patient.  I met with Dr. Fleming, who I had seen 5 years ago.  He seemed to feel the need to explain why he missed my MS 5 years ago.  I told him I completely understood.  I mean I had symptoms that were very similar to migraines. The diagnoses then seemed to fit.  This recent "flare-up" was a little worse and with the additional lesions on the MRI it was logical to check for MS, unlike 5 years ago.

Dr. Fleming is a big fan of analogies and described my MS this way:  Imagine an iceberg.  The very top is like people with obvious MS symptoms ( numbness, weakness, etc.).  Under the water are like people who never have any symptoms and never really know they even have it.  I'm at the water line.  Just barely any symptoms.  Of course this can change at anytime.

He sent me home with some information about current medications that may help manage or reduce MS flare-ups.  He cautioned that theses info packets are basically advertisements and should be taken with a grain of salt. 

• Rebif
• Betaseron
• Copaxone

He did prescribe Oxybutynin for my bladder.  That's right folks, I am one of the luck MS people who constantly has to pee like every 2 hours.  It's been such a problem that I can't get a full night's rest.  I'm hoping this will help.  He recommended that I cut the first dose in half (so my body can acclimate itself) and take it tomorrow morning while I'm having my morning tea and breakfast.  Then keep track of how much time there is between potty breaks.  You just had to know that right?!  Then, if I'm happy with results, I can take it at night before bed since that is really the only time it's a problem for me.

He is also sending me some info on a current trial going on that I might be interested in.  If I decide to do it I will have to drink worm eggs...eeewwww.  Here is a pdf file link describing it. 

[PDF]Fleming's Worm Egg Research Entering Second Phase

It's does look promising.  He said the reduction of lesions for some MS participants was 60%.  That is very encouraging.

Multiple sclerosis explaination

From talking with several people after my diagnosis and getting a lot of questions I realized explaining MS would be helpful.  I'm going to be quoting from the National MS Society a lot so if you want more detailed info go to their website: http://www.nationalmssociety.org

First off, the cause of MS is still unknown.  They do know that it's a disease of the central nervous system (the brain, optic nerves, and spinal cord) and is labeled as an autoimmune disorder.  basically that means my body's immune-system is attacking the protective coating around my nerves called myelin.

So the white spots on my brain in the MRI scan are areas where the myelin coating is damaged and replaced with scars of hardened "sclerotic" tissue.  Dr. Fleming says it's more like blisters on the brain than hard tissue.  When that happens the nerve signals can't transmit properly or may be severed completely.  This can cause a wide variety of symptoms depending on where the damage is. Symptoms like:  "blurred vision, loss of balance, poor coordination, slurred speech, tremors, numbness, extreme fatigue, problems with memory and concentration, paralysis, and blindness and more. These problems may be permanent or may come and go." - nationalmssociety.org

"Studies suggest that genetic factors make certain individuals more susceptible than others, but there is no evidence that MS is directly inherited." - nationalmssociety.org.  I was officially diagnosed at the age of 32 but I showed symptoms when I was 27.  This is a very typical age to get MS.  In most cases MS is not fatal but most struggle with increasing limitations.  So far, my vision, concentration, memory, and speech have been affected.  These kind of symptoms are considered invisible.  While they affect me greatly it may not be noticeable to others.  I feel like what makes me me is slowly being stripped away.  The talkative social butterfly I use to be is shrinking.  I fear getting involved in social situations (especially those with unfamiliar people) because I don't know if my verbal abilities will fail me or not.  I worry about being in charge of something and my vision, memory or concentration just won't allow me to get the job done.

Studies also suggest that those lacking certain vitamins and minerals add to their susceptibility.  After doing some research and reading about others with MS and what they have done health wise that has helped.  I have chosen to take vitamin D3, fish oils, B-12, Migrelief (B-2, magnesium, feverfew in it) Newchapter organics Every Woman multi-vitamin + Herbs and minerals.  I take these all twice a day except B-12 which is a morning only pill.  Since those who are overweight and unhealthy have more MS symptoms than those who are healthy.  I'm going to probably join the YMCA and start a swimming regiment.  Heat and humidity can cause MS symptoms to flare up.  In my case I noticed when I work out my vision in my left eye become unbearably blurry.  I'm hoping that swimming will keep my body temp level while I exercise.  I'm also going be more strict on my diet.  Sticking to South Beach because I've done it in the past and know it works.  I have an appointment July 21 with my neurologist.  At the appointment we will be deciding what needs to happen next.  I may or may not be put on medication.  We'll see I guess.

I hope this all help explain a lot.  If you have more questions, just type them up and I'll try to do my best to answer them.

The diagnosis

Got a call from Dr Seeger's nurse Shannon, and she told me that I have an excess amount of proteins that is considered a positive test for MS.  I got the call at 7:50AM right around the time we were dealing with a severe thunderstorm.  I cried with the God this morning.

Day of hospital testing - Done!

Matt, I and the kids left our house at 8am on Wednesday, July 6th, to drop them off at John and Jenny's house.  John and Jenny will be keeping the kids til July 10.  During that time they are even going camping at Lake Emily for the weekend.  Lucky ducks!  Karen is going to be driving our kids to the camp grounds since there isn't enough room in John and Jenny's van.  Then Karen is going to meet my mom and dad in Plover on Sunday and give them the kids who will then spend the rest of the week in Wausau.  they have never gotten to do this before and now that my mom is not working it's a great opportunity to be out on the farm.  So by the time the kids return on the following Saturday they will have been away for a week and a half!  We have never been apart for that long!
Anyway after we dropped of the kids and said our goodbyes laced with behavioral reminders and I love yous, we headed off to the UW hospital in Madison.  We had to be there by 9:30am for check in.  My first appointment was an EEG at 10am.  Basically the doc glued wires to my head and I watch a checked TV screen that moves for a half and hour for each eye.  Pretty easy and very boring.  When I was all done he used nail polish remover to get the wires and glue off (well most of it).  I had glue chunks in my hair the rest of the day.  I then checked at the registration desk about where to go for my lab work.  They said I didn't have lab.  I knew I did so I went up to neurology and asked them.  They didn't have record of it.  I wasn't convinced so I asked to talk with Val, my doctor's nurse.  Well Val was on vacation but her substitute checked Val's notes and sure enough the order for lab was there.  It just never got entered in to the computer.  If I wouldn't have been persistent, I would've had to drive all the way back to Madison just to do lab work cause someone dropped the ball.
After getting directions for the lab area I got 4 vials of blood drawn and then Matt and I went to eat at the cafeteria.  Oh my goodness was the food selection awesome!  I was really hungry by that time so I bought more that I should have.  Dumb dumb idea.  I was full during my spinal tap and very uncomfortable.  Well, more uncomfortable than I had to be anyway.
The spinal tap procedure was... Well to be honest, awful!  Matt wasn't allowed to be in there with me which sucked.  Also, I'm sensitive to lidocaine and if given a lot I tend to get sick.  Doctor Seeger said that was going to be a problem because that is usually what they use and any other substitute was a lot like lidocaine and would cause the same problem.  Since I'm usually fine with a little, she had me do the spinal tap sitting up so the process would be 10 minutes long and not 20-30 minutes long.  I was totally fine with that.  However the downside is I had to hunched over my full stomach, blech.  After I got injected with the lidocaine I got sick.  I felt the urge vomit.  Now this might have been because I was nervous about what was coming next.  I'm not sure. I did manage to keep it in and after my hair was pinned up I felt a little better.  I was told not to move because she marked the area and if I moved she would lose the spot.  But I was hunched over for about 10 min and my shoulders and neck where getting very sore and we hadn't even started the spinal tap yet.  I told her I was worried I would end up moving because I hurt so bad.  I asked for a pillow or something so I could rest on that while I was bent over.  She said "Oh you mean I forgot to give you a pillow?!  Sorry about that!"  Seriously lady?  She finally hands me a pillow but I was so tensed up by that point because my neck and shoulders were killing me.  I did feel the needle for the spinal tap and I felt it the whole time.  There wasn't just pressure like most people say.  I think that had to do with the limited lidocaine she gave me.  I felt shock bursts go down my right leg several times which made me involuntarily flinch.  The last shock was the worst as she was pulling it out.  My right side has been sore ever since.  I hope I never have to go through that again!  She did show me the vials of spinal fluid.  It's clear like water.
After she put a bandage on me I had to lay down for 1 hour.  Matt was allowed back in the room and we watched TV while I drank caffeinated beverages and ate salty pretzels on a full stomach.  Again blech.  I had to eat salty things and drink caffeine to help my body replenish and to prevent a migraine.  It was about 2pm when we were finally allowed to leave.  I was told to lay down as much as possible for the next 24 hours and not do much for a week.  Matt took me home and cared for me.  I was so hopped up on the caffeine I couldn't sleep so we watched episodes of The Big Bang Theory.  I did succeed at not getting a migraine. Yay!
I've been watching videos on Netflix or reading my book again today.  I still hurt but not too bad.  Luckily I have an awesome hubby who is doing everything for me.  How blessed am I!  Finally got to shower and still can't get all that glue out of my hair.  Dr. Seeger said she hopes to get back to me by Monday on the MS test.  She said she will call regardless if the test is positive or negative.  So I should know by next week if I have MS or not.  I have peace about it which only the Lord could provide.

Relapse

So I have been struggling with my vision again in my left eye.  Doctors ordered another MRI and when compared to my 2006 MRI there are more lesions (white matter-plaque or scar tissue). They actually look like little light gray spots.  The concern of MS came up again so this time I get the joyful experience of a spinal tap. *sarcasm*

I'm very nervous about this procedure.  I get weak just thinking about it.

Here is what I will be experiencing on July 6th:

Lumbar Puncture

For a lumbar puncture, you lie on your side with your knees drawn up toward your chest. This position helps widen the spaces between the bones of the lower spine so that the needle can be inserted more easily. A numbing medicine (local anesthetic) is put in the skin. Then a long, thin needle is put in the spinal canal to collect a sample of cerebrospinal fluid (CSF). Your doctor may need to move to another area of your spine if it is hard to get to the spinal fluid.  Process takes about 20-30 minutes.

After the procedure, I will have to lay in the supine position for 24 hours, then for 5 days I have to take it easy so the puncture site can heal.  Matt is taking the day off for the lumbar puncture and will be caring for me.  Jenny has so graciously volunteered to take the kids for a while.  Kiki, John, Jenny & boys plan to take the kids camping at Lake Emily too while I'm laid up.  Then, my mom is taking the kids up to Wausau just because she wants too.  I don't know which day yet she will be bringing them home.

I ordered my 2006 and 2011 MRI images and notes.  Seeing ones own brain is very surreal!  It took some studying and practice but I think I am now able to discern a lesion or two.  The speech area of my brain has some lesions so that explains a lot!  Recently I have been having a very difficult time speaking.

Here is a picture of some of my lesions:

Turns out the vision problem is an inflammation of the optic nerve of my left eye.  I don't know if this is related to the lesions or not.  The doc said to take baby Aspirin and see if that improves my vision.  So far, little to no improvement.

Well, that is the skinny on what has been going on with me.  I will update when I can.

Sam's knitting instructions