Another Mom Blog

Saturday, August 23, 2014

So I Guess I Have MS

Apparently I had forgotten for a while, well sort of at least I was able to put in in the back of my mind. I am assuming my medication Copaxone was actually working. I've stopped taking it because I am now getting my body ready for the invitro fertilization to carry my a second baby for my good friends.

Although my symptoms never actually went away, they seem to have come out from the back shelf I put them on. My dizziness is ok, but I am tingling, numb, exhausted and my arms and legs ache with intensity,

For a while I didn't always believe that I do have MS. I had received a second opinion for a MS specialist Neurologist and she agreed with the diagnosis.

So some days I'm feeling newly diagnosed all over again when my symptoms are kicking my ass. I am hoping that things get better when I am actually pregnant. Both Neurologists agree that the body tends to go into a protective state while pregnant and many women experience no symptoms at all. Please let that be me.

Thursday, May 22, 2014

AIP Abandoned, sorta...

So it probably wont come as any surprise that my attempt to follow the Autoimmune Protocol failed, or was just abandoned. After about two weeks I found that I was annoyed all the time and generally unhappy about what I was doing, and in the end it is just all about quality of life so I had to make the choice. It wasn't helping my symptoms (yes I know, you are supposed to go for 30 days) so I made the choice to just eat. It was really becoming an unhealthy obsession for me.

I am still eating a paleo style diet, most of the time. I have read TONS about gluten, grains, dairy and sugars and it convinced me that they really have no place in my everyday diet. Does that mean that I don't have it ever, no. Again, I'm making the choice to have some of those items in moderation from time to time.

I am not doing much better in terms of my symptoms. It is weird and frustrating at how unpredictable it has been for me. Many days I feel OK, but the dizziness and tingling and numbness is always there, just in different intensity.

I've begun taking Copaxone to treat Multiple Sclerosis. Copaxone is what is called a disease modifying drug. It is supposed to block my immune system from attacking itself and reduce the amount of "flare ups" or "relapses" I have. So far nothing is different with my symptoms, though it is not exactly supposed to treat the symptoms.

It has been frustrating to me that I've got nothing to deal with the symptoms. I can deal with the tingling, numbness, but the dizziness just overtakes my life sometimes. The dizziness also comes along with fatigue. I wonder if it is the dizziness that makes me tired or the fatigue that makes the dizziness worse. Either way it sucks and I hate it.

The other night the dizziness was just making me want to jump off a roof so I took a Meclizine, which is a complete waste of time, I'm not even really sure why I take it. It is sometimes prescribed to people with vertigo or dizziness associated  with the vestibular system, but really I have dizziness caused by a disorder effecting the central nervous system, why then take it? I was desperate. Again, big waste. I was still dizzy and I spent the whole next day (at work) like a zombie. I was so tired, I barely even remember the details of the day.

I should have called out sick from work yesterday but I couldn't bring myself to do it. I couldn't bring myself to go home. Doing so would be admitting that I am not iron clad and as strong as I like people to perceive me to be. I don't like to ever be vulnerable, I always need to be in control.

I feel like I have lost all control now.

Tuesday, April 29, 2014

I think I am feeling better

I'm not sure, but I thought I should write it down so I can re-evaluate in a few days.

I still have some tingling and some numbness, maybe I will always have those residual symptoms. I do think that my fatigue has improved. Dizziness, still seems to come and go.

Yesterday I noticed that I felt pretty good. I didn't feel like I wanted to lay down on my desk in the afternoon, or need to anyway. I still feel a little floaty when moving my head suddenly but its not as bad.
Maybe this was bound to happen anyway? Maybe my diet is effecting my symptoms, I don't know.

Like I said, I do still have tingling happening. I haven't completely gone AIP. I have been having wine and coffee. I'll nix those next to see what happens. I also think there may have been some gluten in a sauce I ate yesterday with lunch.

Monday, April 28, 2014

One week on AIP

Sorta.. yup that's right I didn't make it. Damnit. I read over and over that to do AIP correctly you must really not cheat for 30 days to figure out what is causing the problem.

Though I said I wouldn't, I cheated and ate a piece of cake.

The hubby and I went out to dinner for our anniversary and I ate like I should for dinner, then I ate the cake. So I guess I am sorta starting over. Blech.

Yesterday I did some cooking to set myself up for success this week. I made herb beef patties and chicken patties. I also did some garlic mayo. The beef and chicken patties came out great! I put them in the freezer to take out for breakfast in the morning, all I need to do is heat it lightly in a frying pan.

I am not sure about the mayo, it has a really heavy coconut flavor. Maybe if I added more olive oil, but I was afraid that would be too heavy. I need to play around with that one.

I also made a batch of flounder to top my salads for lunch for the week. That is not picture because I forgot about them and burned them to jerky, so there goes that plan.

Wednesday, April 23, 2014

Day Three of AIP

Today is day three of following the The Autoimmune Protocol, it hasn't been too bad so far.

Last night I really really wanted a little Cadbury mini egg, but I refrained. I don't know if I am feeling any better yet, not that I expected too this quick. I feel generally achy today, especially on my left side, my left leg hurts and I'm having spasms in my left arm, tingling in my feet, still floating.

I find I have been struggling a little with breakfast. For some reason we all have ideas of what breakfast should be. Eggs, toast, bacon, cereal, pancakes, why? Why do we put certain foods into certain categories like eggs for breakfast, sandwiches for lunch.

I decided to make some food so that I could just heat it up in the morning. I made the best, the BEST, sweet potato hash. It was so simple:

Cut up a pound of bacon, I used uncured all natural, no preservatives, cook in a frying pan
Remove the bacon (not the grease) and add two large sweet potatoes cubed, cook until tender and remove
Add 1 sweet onion diced or sliced and cook until translucent, add two cloves minced garlic, salt and pepper and onion powder.
Put it all back in the pan for a minute or two.

Yum! I didn't take a picture or I would post it.

So this morning I grabbed a bit of that to take to work and eat for breakfast, but today was a gym day so I needed some extra protein. I'm still getting used to not having my protein shakes and I miss them, so I have had to be more creative with my protein intake. There was a leftover pork chop in the fridge so I cut that up and ate it in the car on the way to the gym, whatever works!

Monday, April 21, 2014

Paleo Diet and Autoimmune Protocol

So I have spent a great deal of time reading about a the Paleo Diet and the role it can play in healing/managing MS. A Paleo style diet is also known as the Caveman diet. The short of it is, no processed foods, basically just meat and veggies.

MS is an autoimmune disease so I have chosen to try to follow The Autoimmune Protocol because it makes sense to me that what I put in my body effects how I feel. Starting today I will be doing a thirty day elimination diet. I have read a couple of different things, that the elimination phase should be 23 and some say 30 so I am not sure exactly what I will use for a date yet. I am giving up grains, processed foods, dairy, eggs, nuts, seeds, sugar, coffee and alcohol and then I will slowly start to reintroduce them. I will not reintroduce grains though, and I am not sure about dairy, maybe in limited amounts.

I had already reduced my intake of grains and processed foods considerably. After baby M was born I had a month to get back to where I wanted to be to enjoy my Florida vacation. I kept the lifestyle since I felt better on it.

This weekend I ate and drank a lot. I said goodbye to some of my favorite foods and today is day one of the elimination diet.

No coffee today, replaced it with green tea. Lunch, well I forgot to pack my salad so I am not sure yet!
The elimination will be tough, but I can handle it. I need to see if it helps, the fatigue and dizziness is kicking my ass.

Being Diagnosed with Multiple Sclerosis

I thought it was time, to get it all out in words, all of the stuff that has been clouding up my mind for the past couple of months.

On April 1st, I got my official, you have Multiple Sclerosis diagnosis, but by that point I was really already OK with it. 

I started having some strange things happening in February. I had a few dizzy spells and I thought, that maybe it was low blood sugar, or I was tried or whatever. I've been dizzy before, it goes away. But then it didn't and it got worse. One night in particular it was really bad and when I woke up the next morning my left arm was tingling and the left side of my face was numb. I thought maybe I was having a stroke, or maybe it was a migraine or maybe I had a B12 deficiency. I ignored things for about a week, trying various home remedies. 

Feeling like maybe it was an ear infection, or clogged sinuses. After a week I went to my PCP's office and saw one of the nurse practitioners. She said I had vertigo, tried some weird thing where she would lean me back and flip me up really fast to try to correct it. It didn't work. She suggested that I continue to try the antihistamines for the dizziness. She also felt that maybe the tingling in my arm was a pinched nerve from lifting weights, she told me to come back in 10 days if I didn't feel better. 

After about another week of not feeling any better, I woke up during the night with my left leg numb. I could not feel it, the tingling in my arm was so bad I wanted to cut my own arm off. So I called and went back in and saw my regular nurse practitioner. Soo many things running though my head, I think I was starting to make up symptoms from anxiety. She did and EKG, I was not having a stroke or a heart attack. She ordered blood work, that came back normal, she didn't know. At this point, after researching all of my symptoms on the internet, I thought I either had Multiple Sclerosis or a brain tumor, so I asked for an MRI. 

The next day I was in the car with my  boss on my way to one of the homes and the doctors office called first thing in the morning. Of course I was freaked out. The nurse said the NP wanted to see me to go over my MRI, my boss was extremely supportive and we turned around so I could see the doctor. 

I was so scared that I had a tumor, or something scary and immediately life threatening. My hubby was out of the country for work and I felt completely alone and not able to take the news myself, so I called my sister. The NP came in and told me that the results were highly suggestive if Multiple Sclerosis and further testing would be necessary, onto the lumbar puncture.

I have to say I was the most scared of the lumbar puncture than I have been of any other procedure I've ever had. I've had three babies, all without the use of a epidural just to avoid having a needle in my back. I'm not so much afraid of needles, in fact I've given myself injections just fine, I was so afraid that he would miss or something causing me to lose all feeling in my legs. Luckily it went just fine, I really no adverse effects. I had a headache but nothing unbearable that I've heard can happen. 

So two weeks later I met with the neurologist who did an exam and reviewed my results. He said yes I do have Multiple Sclerosis. He feels that I will not suffer any major deficits with being on a disease modifying drug. Currently I still have numbness and tingling, mostly on my left side, but also in both feet. The dizziness comes and goes in intensity but is always there. My neurologist said he thought those symptoms would subside. 

So I'm waiting now, waiting on medication. I will be taking Copaxone, an injection three times a week. It hasn't arrived yet because apparently there is a hold up with insurance, pre-authorization, getting the med from the specialty pharmacy, good thing I'm not dying or anything. I'm also going to see if changing my diet helps, which I will talk about in another post. 

For now, I'm good. It could always be worse, I am choosing to look at it as a life's annoyance that I need to deal with.