Day of Electrodes

So tomorrow is hopefully the last of all my testing. I get to spend hours at the hospital with electrodes glued to my head, woo hoo! I guess the secret will be out that I’m crazy, lol. The fun begins at 9:00 am, and for approximately the next three hours I will have a VER, BAER, and SER done.

VER-Visual Evoked Response

VER's evaluate the visual nervous system for optic tumors, retinal disorders, and demyelinating diseases such as Multiple Sclerosis.

As with other testing, the technician will measure, mark, and prep the scalp for the electrodes. Six will be used for the VER, 5 on the scalp and one behind the left ear. Each eye will be tested individually. An eye patch will be placed over the non-test eye, you will be seated in front of a computer monitor and a checkerboard pattern will be visible, this is the stimulus. You will be asked to focus on a small red pulsating dot in the middle of the screen for a few minutes with each eye separately, while in the background the checkerboard squares will be moving.

The procedure takes approximately 15-30 minutes.

BAER- Brainstem Auditory Evoked Response

BAER's are used to evaluate the auditory nervous system (including the brainstem) for acoustic neuromas, brainstem tumors, hearing disorders, demyelinating diseases, etc.

As with all testing, the technician will measure, mark and prep the scalp for the electrodes. Four will be used for the AER, two on the scalp and one behind each ear. Headphones will be placed over the ears to deliver a series of clicks to each ear individually. This sound is the stimulus.

The procedure takes approximately 15-30 minutes.

SER- Somatosensory Evoked Response

SER's evaluate the nerve pathway from the peripheral nerve through the spine to the somatosensory region of the brain. (Somato = body, Sensory = reception and transmission of the sense impressions). SER's evaluate spinal cord injuries or disease, neuro-musclar disease, and demyelinating diseases.

As with other testing, the technician will measure, mark, and prep the scalp and prep various other points along the nerve pathway from the arm and leg to the brain. A small electrical current is applied to the skin overlying a nerve or nerves on the arm or leg. The electrical current is the stimulus.

The procedure takes approximately 1 hour (60 minutes)- 1 ½ hour (90 minutes).

After all that I get to spend another hour or so having an EEG done.

EEG- Electroencephalogram

An EEG is a recording of electrical activity of the brain. It is a diagnostic tool used to evaluate seizure disorder, stroke, infections of the central nervous system (encephalitis etc), degenerative disorders (Alzheimer's, Parkinson's), head trauma (accidents), headaches, brain tumors, etc.

The technician will measure, mark, and prep your scalp and place a small metal disk (electrode) in each of the 27 areas. The disks “pick-up” the electrical activity of the brain. This activity is transmitted through the wires to the EEG computer where they are amplified sufficiently to be seen on the recording.

The procedure takes approximately 45 -60 minutes. Activations will be done to stimulate the brain: Eye opening and closing, flashing a strobe light at different speeds, and over-breathing for about 3 minutes.

I have a feeling that it will be a very long day. To top it all off, they want me to have no more than five hours of sleep for the EEG, but to be well rested for the other tests. Ok, so how do they expect me to do that? I say get normal sleep because come noon when the EEG starts, I will be ready for a nap.

I’m just so ready for some answers. I have done test after test without results from any of them, so thank goodness this is the end.

Neuro and Canes

I finally heard from the Neurologists office today, I have an appointment July 6 to hear all the results from my blood work, LP, EEG, VER, and BER. Sounds like a fun filled day. I guess I need to decide for sure if I am going to start meds or just stick with doing things the natural way. With the way my legs feel today I would do anything to make it all better. I guess this is just a preview of what is to come. *Oh Joy* I went to the bank and post office today and it was rather difficult to get to and from the car. I hope there aren’t many more days like this just yet. I suppose it’s a good thing that I made plenty of  Baked Spaghetti last night, because I think that will be tonight’s supper as well.

When do I know it’s time to buy a cane? What kind of cane do I get? I don’t want to push it to soon and get one before its necessary, but on days like today when I feel a bit unsteady and weak, should I have one on hand?

Supper Tonight

Baked Spaghetti

Ingredients:

1 (8 ounce) package spaghetti, cooked

2 Tablespoons butter

1 cup grated Parmesan cheese, divided

1 (24 ounce) carton ricotta cheese OR cottage cheese

1 pound ground beef

1 (25.75 ounce) jar Italian-Style spaghetti sauce

1 (8 ounce) package shredded mozzarella cheese

Directions:

1. Preheat oven to 400 degrees F.

2. Line a 13x9x2-inch baking pan with aluminum foil. Spray with non-stick cooking spray (coat well).

3. Combine hot cooked spaghetti with butter; stir until butter melts and coats spaghetti.

4. Add ½ cup Parmesan cheese; stir to coat. Arrange spaghetti in an even layer in foil-lined pan.

5. Spread ricotta cheese over spaghetti. Sprinkle with ¼ cup Parmesan cheese.

6. Brown ground beef, drain; add pasta sauce and heat until bubbly. Spoon over cheeses.

7. Top with mozzarella cheese and remaining Parmesan cheese.

8. Cover with foil. Bake 30 minutes.

9. Remove foil cover and continue baking 15 minutes or until cheese is lightly browned. Let stand 10 minutes before serving. Serve with tossed salad and warm Italian bread.

Medicine vs Herbs

I have been reading on the Patients Like Me forum, which I highly recommend,  about Curcumin and it has sparked my interest. It is supposed to block the progression of MS, and hey, I'm all for that. Considering that I am the daughter of an Herbalist I have witnessed what herbs can do for people. For some reason I just don't want to start taking any of the Interferons quite yet. I think I will try Alpha Lipoic Acid, Turmeric (which is where the Curcumin comes from), Omega Oil, Vitamin D3 with K2 Sublingual,  FerroFood (Iron with a glandular proprietary of bovine and porcine, along with Vit.C and B12), cross my fingers and hope for a miracle. I know there is no cure for MS, but I can do whatever I can to slow down the progression of it and to help myself feel better.
I would love to be able to get back into working out a little bit. I could really stand to lose some weight, besides that, it is very important to stay active. It's been about 10 years ago since I've worked out and I loved doing it back then. I know I wouldn't be able to do even 1/3 of what I could do back then, but to just get on the bike and do some light weights would feel good. Right now my body is so sore and getting up out of a chair is painful. Maybe after starting these herbs I will be able to move about a bit more easily.

Supper Tonight

Slow Cooker Pork Steaks or Chops

Prep time: 10 mins

Cook time: 4 hrs

Servings: Yields 4

Ingredients

1/4 cup olive oil

1 cup chicken or vegetable broth

2 cloves garlic, minced 

1 tablespoon paprika

1 tablespoon garlic powder

1 tablespoon poultry seasoning

1 teaspoon dried oregano

1 teaspoon dried basil

4 thick cut boneless pork chops or 2 large pork steaks

salt and pepper to taste

Directions

In a large bowl, whisk together the olive oil, broth, and all dry ingredients. Pour into slow cooker. Cut small slits into to each pork chop or steak with the tip of a knife, and season lightly with salt and pepper. Place pork shops into slow cooker into the slow cooker, cover, and cook on high for 4 hours. Baste periodically with the sauce.

Parmesan Noodles

Prep time: 5 mins

Total time: 20 mins

Servings: Yields 4

Ingredients

1 (8 ounce) package of your choice of pasta

3 tablespoons butter, melted

1/8 teaspoon garlic powder

2 tablespoons chopped parsley

2 tablespoons grated parmesan cheese

Directions

Cook pasta as directed on package, drain well.

Toss everything together and serve immediately

Baby Carrots with Dill Butter

Prep time: 10 mins

Cook time: 10 mins

Servings: Yields 8

Ingredients

1 (16 ounce) package baby carrots

2 tablespoons margarine

1 tablespoon chopped fresh dill (you can use dried dill as well)

1 tablespoon fresh lemon juice

1/4 teaspoon salt

1/8 teaspoon pepper

Directions

Place carrots in a saucepan with enough water to cove. Bring to boil, and cook 10 minutes, until tender. Remove from heat, and drain. Gently toss with margarine, dill and lemon juice. Season with salt and pepper.

Easy Lasagna Rolls

Ingredients

12 lasagna noodles, cooked, drained

2 cups ricotta cheese (or cottage cheese) I prefer Ricotta

1 1/2 cups mozzarella or 6 Italian Cheese, shredded

1/2 cup parmesan cheese

2 eggs

2 tablespoons parsley, chopped

1 (32 ounce) jars spaghetti sauce (I have become a big fan of Classico Spinach Florentine Sauce)

1 -2 cup mozzarella cheese, shredded, for topping

Directions

1. Mix ricotta cheese, 1-1/2 cup mozzarella and parmesan cheese with eggs and parsley.

2. Place one lasagna noodle on work surface.

3. Spread 1/3 cup cheese mixture on noodle evenly.

4. Roll up tightly like a pinwheel.

5. Place seam side down in microwave-safe baking pan, that has 2 cup of spaghetti sauce in bottom.

6. Cover rolls with remaining sauce and sprinkle with additional mozzarella cheese.

7.Cover with microwave-safe wrap and microcook on high 10-20 minutes, until cheese is melted.

Easy in the Kitchen

As a wife and mother dealing with the pain of MS, I try to prepare meals that are fast and easy with as few ingredients as possible. Standing in the kitchen is one of my least favorite things to do just because it causes me more pain. So on occasion, I am going to try to remember to post some delicious recipes that the whole family will love. I hope your family will enjoy them as much as mine does.

What If’s, Here and Now

I feel like I had a fairly productive day yesterday. I filed a complaint with the North Carolina Medical Board against Dr. Jeffery and I contacted an attorney. Crossing my fingers that when the attorney reads my information, he will decide that I have a malpractice suit. Whether it is the doctor that is directly responsible or another staff member that was supposed to call me. SOMEONE needs to be held accountable for not informing me that I have MS. I also called Wellmont Bristol Regional Medical Center to get a copy of the second MRI that supposedly caused him to diagnose the MS. Now I have to wait until they send me the release form to sign, then send it back to them,  so they will in return send me the MRI Disc.  I still can’t believe how irresponsible this doctor was. When I filed my complaint, I looked to see if he had any other complaints filed against him and he hasn’t. I guess I was just the lucky one that he screwed over.

It really makes me wonder how much better I could have been feeling for all these years if I would have been doing therapy. Maybe I wouldn’t have been having so much back pain, and had all the tingly in my legs and muscle weakness. The best thing  would be,  maybe I wouldn’t feel so stupid by forgetting words or getting so tongue tied when I speak. I just can’t believe this shit! I guess I can sit here and think about all the “what if’s” instead of the “here and now” and get nowhere, or I can focus on getting treatment now and taking care of myself. I have the rest of my life to battle against this disease, so taking it one day at a time is all I can do I suppose.

Diagnosed With MS 4 Years Ago, Wish Someone Would Have Told ME!!!!!!!

You have GOT to be kidding me!!!! I'm pretty sure I would remember a conversation about me having MS and starting treatment!
I had requested my medical records from North Carolina Baptist Center /Wake Forest University from Dr. Douglas R. Jeffery, M.D., Ph.D, Associate Professor at the Multiple Sclerosis Clinic. I tell you so much information so you can see what a “Professional” this Neurologist is.
On February 14, 2007 I had an appointment with Dr. Jeffery, I was referred to him by my primary doctor at the time, Dr. William Mark Handy. Who happens to still be the best doctor I have ever been to.  Anyway, I was referred to Dr. Jeffery for the purpose that Dr. Handy suspected that I had MS and Dr. Jeffery was an MS Specialist. My first visit wasn’t that best, he had no bedside manner at all and he did mention that MAYBE there was one spot on my MRI that could possibly be a lesion but it was barely there, so it was hard to tell. He wanted me to have a cervical MRI and come back in six weeks for the results.
So I had the MRI and went back on April 5. Forgetful me didn’t take a copy of the MRI with me and he wasn’t happy. He flat out told me to go home and lose weight and I would be fine. So once again I left his office without any type of answers whatsoever and never heard from his office after that.
As time went on and my pain got worse, Dr. Handy referred me to a Rheumatologist to see if they could help me. On my first visit, Dr. Christopher Morris diagnosed me with Ankylosing Spondylitis (AS). Throughout the past few years I have tried every TNF inhibitor to treat the AS,  without any luck. Which brings us up to date.
I was having this weird eye/head thing going on so I went to my primary doctor, Dr. Kevin Kaufhold. He sent me to have and MRI to rule out tumors or any other bad things that might be floating around in my brain. LOL  Well as we know, the results are in and it is MS. Lovely, just lovely!!!
So now I am starting over with a new Neurologist, Dr. Galea and hopefully he knows what he’s doing. Since I am going to a Neuro I thought I would contact Baptist Hospital and get a copy of my record from Dr. Jeffery. So today I got the mail and my records were in it. Much to my surprise this is what I read…

“At this point, I believe we have confirmed a diagnosis of multiple sclerosis. She has additional imaging evidence compatible with that diagnosis by MRI scan. At this point, we will plan to go ahead and start her on Rebif therapy.  I will see her back in six weeks. I have talked to her about all the side effects of this therapy. She will return to clinic in six weeks and will check her baseline CBC and liver function test. I wish to monitor interferon and interferon-induced hematologic and hepatic toxicity.”

And that takes us back to the beginning of the blog…You have GOT to be kidding me!!! Never did he tell me during that visit that I had MS nor did we ever discuss treatment. I am pretty positive that I would remember having such a conversation! I am beyond pissed that I was in no way informed of such a diagnosis. Don’t we all think that if I was told that I had MS that I would have been treating it. I don’t know if he got a copy of the MRI later and made the diagnosis and someone forgot to call me, but I NEVER received another phone call from his office again.
Bad enough that I was never told about the diagnosis,  but now I have been taking TNF inhibitors that has a side effect of demyelinating disease. So for the last four years I could have been treated for MS, but instead I was taking drugs that can cause it as well. Isn’t that just a HUGE kick in the ass?

Heat Intolerance

If you have ever been around me in the summer, then you know all to well how crappy I feel with the heat. With this darn M.S. diagnosis comes another explanation of why the heat kicks my ass...

"As people with MS, we have plaques on our nerves where demyelination has taken place. This slows the ability of the nerves to function, and heat further slows down nerve impulse transmission in demylinated regions. Even a very slight increase of as little as one-quarter to one-half a degree in the body’s core temperature is enough to cause symptoms of heat intolerance."
http://ms.about.com/od/signssymptoms/a/heat_intoleranc.htm

What a Freaking Nightmare

After having an LP done on Wednesday I had developed a spinal headache. This morning when I woke up I felt like the front of my head was going to literally explode! The only thing I knew to do was to have a blood patch done, so I called Cari to come and take me. Jeff had already missed two days this week due to Samantha having her adenoids out and my LP so I didn't want to have him leave work to take me. Cari came to get me and off we went with me in my PJ's to the Pain Management Clinic at Memorial Hospital. They said they could get me in at 11:00, well they failed to mention that they were squeezing me in and we waited forever. When they finally got to me, they told Cari she had to go to the waiting room. Now this is where the fun begins...they had me lay on my side and started the procedure. First she numbed it, which didn't feel so good and then she tried several times to find the space to insert the needle. After several tries, and hitting bone, because apparently I have too much arthritis in my back, she decided that she needed to use x-ray to help guide her. They had me lay on my stomach with 3 pillows under me to help expand my spine so she could get into the space much easier. Well after numbing me up some more, here we go again! She managed to get it right in, but then came hell. I felt a sudden heat wave come over me, sweat was pouring and I felt like I was going to throw up. I announced the latter and that I needed to move and I would feel better. In a matter of seconds I was panting and dry heaving, as quick as it started, they had a cold rag on me, a pan next to my mouth, oxygen and was calming me down. I stayed face down dry heaving, all the while repeating for them to hurry and finish. As soon as she got the blood injected they quickly rolled me onto another bed. I immediately felt better. I don't know if it was from my big belly being pushed on or if she hit right on a nerve or a combination of both, but damn it, I will never go through that again. It was a nightmare!

Good news is that it did it's job and got rid of my spinal headache, bad news is that the pain in my back and hips is horrible, Oy vey! Annnnnnd, to add to the crap of a week, my insurance FINALLY approved my tonsillectomy and uvelectomy so I can have my gianormous tonsils out to help with my sleep apnea. After months and months, they decide it's ok. Well the timing couldn't be worse, soccer conditioning has started which means Skyler will need rides to and from at the crack of dawn, if I wait until July Samantha will be in Summer School at Disney. God forbid insurance approve it when it was convenient for me.

All in all, let's just chalk this week up to being not the best I've had all year.

No Biggie

I feel overwhelmed from all the love and support that I received from my family and friends, that includes ALL of those Facebook friends! I was sooooo nervous this morning at the thought of having an LP done. You hear so many horror stories from people and see on TV how it is done, and it looks so scary.

We got there at 7:00am to check in and right from the start I LOVED my nurse. His named was David, he just made me feel so calm & comfortable by cutting up and just being himself. Jeff said he was relieved that I liked him from the beginning because he knows how I can be if I don't like someone. LOL  Everyone that came in the room was so nice and told me that the procedure was no big deal, and they were right. I was taken into the "freezer" where I  rolled onto a very hard table on my stomach with a pillow under me. They sterilized my back and shot up my IV with some good drugs to relax me. Then the doctor numbed the area and stuck the needle in, they tilted the table so that the spinal fluid would drip out and VOILA! I think it took all of 20-30 minutes. Shew, it was nothing like I thought it was going to be. It really wasn't any big deal at all. After they were done I had to spent three hours at the hospital laying on my back or side. I slept most of it while my wonderful, patient husband sat there by my side. Without him by my side I wouldn't be able to get through any of this.

As soon as I sat up I got a bit of a spinal headache so I reclined in the car on the way home. Once we got home, I didn't last long in the recliner before heading to bed. I ended up sleeping for about 3 hours this afternoon. After having a nice rest I am feeling better, I still have a slight headache but nothing too bad. Hoping that tomorrow I will feel normal and that in a few days I will hear the results of my LP and blood work.

I would really love to know who in the hell deicided that step parents dont freakin count. Especially the ones like me who take care of the children everyday. So because I didnt give birth to her I don't count when she has surgery.But the so called mother that sees her 2 days a week and doesn't help support her at all counts more than me. Not to mention the fact the she never noticed that her daughter couldn't breathe through her nose.  I have known the child for two years and I noticed the first time I spoke to her. It's a bunch of shit! So the biological mother  that doesn't call throughout the week, or  make sure that she's clean and has clean clothes to wear or takes her to school and helps with homework, matters way more than the one that does?

Day o' Fun

Today was wonderful! Well it didn't start out so great. I had went 2 days without taking my Cymbalta because I ran out and it is so expensive, I thought I would try to get off of it. HUGE mistake!!! Talk about feeling like complete and total shit! I had my husband run to Walgreen's to get it first thing this morning, guess I needed a fix. lol  I got up and showered hoping it would make be feel better, but that backfired. Then my day started to get better, I got a text from my niece, Amber. Her and my sister, Christy were going shopping over by me and invited me along. I love spending time with my sister's, nieces and nephew's, other than my husband, they are my favorite people on Earth. We had a fabulous day just wandering through Barnes n Noble, Target and The Christmas Tree Shoppe. We scored big at The Christmas Shoppe! I have been in search of a beach umbrella anchor and Christy remembered seeing one in their ad.

For a whopping $1.99, so excited!

They also had a beach buggy that I would love to have to drag all of my crap through the sand. It, on the other hand, was not so cheap.

Another bargain was Spray Sunscreen for only $2.99. I think I will go back and get a few more bottles at that price.

Amber is always being silly and I, of course have to snap pictures...

He went to Jared!

Her boyfriend has been replaced!

Does this come in a bigger size?

Nothing better for summer fun than a Gazillion Bubbles

Just in case you aren't picked on enough, wear this around the neighborhood...

or this one

Looking through them with her "Special Eyes"

Who in the hell would ever want this hanging on their wall?

She has crabs...lol

Oh my sweet, goofy Amber, she makes me laugh.

At Target we also came across some Retro toys, which took me waaaaaay back to my childhood.

I had ALL of these toys and I remember playing with them all, but my favorite one was the Record Player. Oh to be a child again, with not a care in the world!

First Neuro Visit

Lucky me, I had my first Neuro appointment yesterday. It involved lots of neurological tests like touching by nose and standing with my feet together with my eyes open and then closing them. Apparently it’s a bit of a problem if you fall to the side when you close your eyes. lol  Who knew I had that problem? Not me!  He checked all my reflexes and reflexes that I never knew existed. I was scratched on with a pin and had a light shined in my eyes, and they drew at least 7 vials of blood.  He asked me a thousand questions and asked Cari (my sister) another thousand about me. So by the end he concluded that I had MS and other diseases merging with it. The only problem is that he is unsure of what the other diseases would be.

So now I am in for lots of testing and waiting. I’m not looking forward to having the Lumbar Puncture (LP) done. Being poked in the spine and having to lay in bed on my back all day is by no means my idea of fun. Then I have a fun filled day of testing that include an EEG (electroencephalogram), VER and ABER (http://www.webmd.com/multiple-sclerosis/evoked-potential-test-for-multiple-sclerosis). Hopefully after all of the testing and thousands of questions I will finally get some answers.

I Think I Prefer Neuro Over Tarantino

So tonight has been good, just sitting around with my husband and daughter watching movies. We watched "True Grit", which I was not impressed with. Now we are watching "Reservoir Dogs", oh my, what a terrible movie! I just can't get into Quentin Tarantino movies. Oy vey, now she has changed it "Pulp Fiction", wish I could say that it was better, but I can't :(

Tomorrow I have my first Neuro, appointment, I'm not sure how I feel about it. I'm nervous at what he will tell me and whether or not I will I like him. Sister number 3 is going with me, I am very glad to have her there with me. I'm sure she will think of lots of questions that I won't even think about asking. I do have a list of a few questions, plus a list of symptoms and all my meds. Although, since I am no longer taking meds to treat AS, my list has shortened. I'm sure the Neuro will fix that for me though. I wonder how much shit insurance is going to give me about paying any of this. I'm sure that he will want to do further testing, possibly like a Spinal Tap, Evoked Potential Test or Spinal MRI. I will gladly take the latter of the three if given the choice. I guess I will find out tomorrow!

To my wonderful husband

Happy Birthday to the best husband any woman could ever ask for. Without your love and support I could never make it day to day. You are my world, my everything. I love you!!!!!!!!!!!!

My MS Symptom List

So I have decided that I am going to keep track of my MS symptoms here because I tend to put things "where I will remember" where I put them and of course I never do.

Muscle weakness in arms and legs
Tingling and creepy crawling sensation in legs and feet
Extreme fatigue
Sore feet
Pain in hips with limited movement
Pain in spine and lower back with limited movement
Finger joints hurt
Oh who am I kidding, all joints hurt
Tingling in face and tongue
Funky feeling in eyes and head
Migraines
Shortness of breath
Rib pain
Tender abdomen to touch
Memory problems
Mood swings
Concentration problems
Twitching muscles
Head shaking
Episodes of head shaking, paralysis, crying, speech jumbled
Problem finding words
Slurred speech
Blurry spot in eyes
Periphial vision loss at times
Night vision is poor
Problems hearing if there is any background noise
Problems swallowing
Constipation followed by constant bowel movements
Balance is off
Trip over own feet because my leg just won't move
Heat Intolerance
Sore scalp to touch
Occasional leg spams

That is all that is coming to mind as of right now, like I need any more issues!

Shitty Parents

I will never in this life time understand these parents that know that they have a child but yet never see them or talk to them. My ex husband has three children that he never see's. In fact he has never laid eyes on the youngest little girl, she is 8 years old! The other two are twins, a boy and girl who are 19 years old and my ex has just now met with the boy last week for the first time since they were 3 or 4. I just can't imagine living in the same town as all of my children AND paying child support but never seeing them. I guess I shouldn't be surprised by it since he had nothing to do with my son for the first 10 years of his life. Not only did he not see him for 10 years, he didn't pay support either. Now that my son is almost 18 I am still fighting to get support. However, my son texts him and see's him and just thinks he is the greatest. I just don't get it. I don't know why you would want to be with a father who never wanted to be with you.

Then we have my husband's ex who get's the kid's every other weekend, pays no support and won't keep a job, while my husband goes in early and works weekends to make ends meet and is supporting my daughter as well since her father hasn't paid support since 2004. "Useless" as I refer to her, always has money to buy out the damn concession stand at the ball park, or to go to every festival and fair in the summer. She isn't concerned with the children's personal hygiene or eating habits. She is lazy, the kid's will even tell you that. Her new husband texts my husband for advice on how to make the kid's listen and complains about "Useless" saying that married life sucks and that she is an unfit mother. Need I say more?

Then we have my wonderful husband, who works his ass off and arranges his work hours to be at every ball game and gives everything he has to his family.