Okay....we just got home from my appointment about 45 minutes ago. By the time the doctor showed up, I thought I was going to throw up. Good thing he walked in before I did. :-)
.... Let me try to explain this all in writing. Here is what I know:
1. I wish I had an ultimate answer to give you. I wanted to walk out of there able to say that either 1) I have MS or 2) I don't have MS. Obviously, I was much rather hoping to stay No.... :-) I don't really have that answer, BUT this is what I do have....
2. According to the MRI, the neurologist found six lesions/"hot spots" on my brain. Could it be associated with MS? Possibly....BUT, he said that they can also be caused by things like migraines, traumas, etc., and that they can be from an autoimmune response. So....yes, lesions CAN mean MS, but they don't necessarily mean MS....if that makes sense.
3. He said that, "I didn't look at your MRI and think immediately that 'Wow...she definitely has MS...which, if it was bad, would happen." He reminded me that MS is not a disease that can simply be diagnosed with a quick look at a simple MRI....it is a diagnostic disease that takes time to diagnose through various testings, progression of symptoms, etc..... So, I say that--since he didn't immediately know for sure that it was MS--it is a good thing. It just means more waiting...and I've been doing that for three years now, so that--I know--is something that I can do.
4. He did some physical testing in the office--reflexes, responses, etc....and he said that I wasn't showing signs of any nerve damage....another good thing.
5. He did notice the sharp difference between my right and left eye and that my right eye has had a sharp decline in vision, which is "interesting"; however, he said that, with classic MS, that eye's vision would not be correctable with things like glasses or contacts. For me, glasses help. It doesn't give me 20/20...but glasses do help that eye tremendously, so I take that as a really good "anti-MS" sign.
6. He wants to see me on November 8th (two weeks) to see where my symptoms are at, if they have subsided or worsened, etc. At that point, if they have not gotten any better, I need to have further testing. First is another MRI--but this time "with contrast/dye"...that type of MRI will show if the lesions are active/evolving or inactive...which gives more answers. Also, if it is something like MS, over time, there will be more lesions, they will change, follow a pattern, etc. At THAT point, we will be closer to an answer. Unfortunately, with this MRI being my first one, and being without contrast, this has to be more of a "baseline" to start from than an absolute answer. If there are still questions, I may need to do a spinal tap if he thinks there is reason to. Apparently, 90% of people with MS will have it show up in the results of a spinal tap. He doesn't think I need to do one right now, though....
7. He gave me a prescription for a sleeping pill because he wants to see if, after having definite solid sleep nightly for two weeks, does it seem to make a difference. Uh.....okay...... I'll do it for these next two weeks until I see him, but that's it. I don't want to take a prescription strength sleep aid long term, but I'll do it for two weeks just to be able to answer his question.
8. Since, after whatever happened to me since I had the Mirena inserted happened, I go through periods of remission from my symptoms and "crashes"(which is an improvement from two years ago when I was sick all the time!). I asked the neurologist, "But what if, in two weeks when I see you, my symptoms have improved again, but then they come back in three months? That happened to me just again this last time....I was great for three months, and then--all of a sudden--my body didn't work. What if that happens again?" His response was, "Then you come see me, and we will do another MRI and further testing to see if anything has changed."
So.........as much as I am frustrated because I wanted to walk out of there with a YES or NO answer, I at least feel like I took a step forward. Number one, he didn't immediately say that I was a definite positive for MS. That is great. Number two, this MRI, etc. was a baseline that I know have to compare in the future. If I still have issues as the future progresses, they are going to do another MRI (with contrast) to see if I have even more lesions, if these have changed, etc., and use that information to give me a more complete answer. This first round of testing was a baseline....which is one more step forward than I was a week ago....and I have to remember that is a good thing. One more step toward an answer that I have been looking for.
So now I wait and just live my life. I'm not going to live it in a "what if" state....that state sucks. I'm just going to live and not think about it on the days that I don't have symptoms. Then, if I continue to have symptoms, or if they return at a later date, at least I know that I get to go back in, use this information that I have now, and get even one step closer to an answer. Until then, I fit into the category of "Unknown Autoimmune Disease"....
I wish I had an answer for you all. I wish I had one myself. But, instead of focusing on that, I choose to focus on the fact that I don't have a BAD answer today. Today, I don't have MS, the neurologist doesn't diagnose me as such....and we will continue to find answers if my body decides that I need more at a later date. When I get those answers, I will share them with you--I promise.
Until then....I have to go. My family is down in the family room watching "The Great Pumpkin, Charlie Brown", and I'm not going to miss it. Time to get back to life and focus on the answers that I do have....that God has blessed me with a great family and a life to continue enjoying. So, I'm not going to wallow in disappointment of lack of answers. I'll get them when I get them. Until that day, I'm going to enjoy the life that I have with those I love.
I can't begin to express how much all of your thoughts and prayers have meant to me. I feel them. I really do. I appreciate you more than you ever know.
Not a definite bad diagnosis, and one step forward, folks....THAT is what we focus on.
Now....I have a life to keep on living, and that's what I'm going to do. I have some squirrel-ey kiddos, my sweet husband, a Charlie Brown movie, and a pizza shaped like a Halloween pumpkin to get to. Life, everyone....chose to live it, and deal with the "bumps" when they show up.
Keep smiling. It's a choice. And I have much to be thankful for. I may not have definite answers today, but I don't have bad ones....and any other ones will come eventually.... It's okay. I'm getting really good at this waiting thing. :-)
Love you all--Kristi
Thursday, October 25, 2012
Longest. Day. Ever.....
Sooooooo......I definitely agree that it is time for an update. I'm sorry that I disappeared there for a bit.
Let me try to do a somewhat quick overview of where I'm at.....
I've concluded that I am really great at jinxing myself. A few weeks ago, I was talking to my husband about how much better I was feeling. I had even stopped taking my Progon B (natural progesterone) for about three months, and I wasn't feeling like I was a slave to my cycle anymore. Other than the vision loss in my right eye that never returned, I was really feeling, overall, pretty good.
Then, BAM.....
A couple of Sundays ago, while packing to prepare for a family vacation in San Diego, I woke up just not feeling quite "right"....but not bad enough to really over analyze anything. I was excited to get going on our vacation, and I had a lot to do....
Within a few hours, I noticed that I was having a difficult time remembering what I was packing, or why I went upstairs, or what I walked into that room for (you know the drill).....
Then, I started feeling disoriented...almost dizzy....
Then my hands and feet started to tingle....and soon my hands got weak.
Before I knew it, I couldn't fold a pair of socks well because it was like I couldn't get my hands to do what I needed them to do quickly enough...if that makes any sense.....
By the end of the day, I was pretty emotional because--like I said--I was doing really well, and now I am suddenly thrown back into this scary, "Oh no, what is wrong with me" mental panic that the Mirena has gifted me with far too many times during the past three years of my life..... I just finally had to admit defeat, and I went upstairs and cried myself to sleep.
The next day, we still left on our vacation, and--thankfully--I felt better. Not "normal"...but much better than Sunday. It was like I felt like I had a "hangover" of some sort from whatever happened on Sunday. I wasn't suffering, but I wasn't strong. More annoying than anything. Over the past two weeks since, I still have these "bobbles" that are just off....or weak....or....whatever....just not quite right.
I told my husband that I wanted to go see my doctor about it, and he agreed that I should.
When I went to see my GP after returning home from my vacation (he has finally admitted to me that he agrees that it was something with the Mirena that made me so sick), I told him what happened on Sunday, and he agreed that--even though many of the women who have dealt with all of this regarding the Mirena ended as MS-negative--what I just described did sound like a "textbook MS flare" and that I should finally officially test for it. I agreed that it was time....I need to know for sure. Why? Because although I hardly ever think about it on my strong days, when I have a day like that Sunday, it all comes flooding back...the fear....the panic....the "what ifs"......
I'm just done with it. I need to hear a neurologist look at me and say, "I'm looking at a picture of your brain, and it looks okay. You don't have Multiple Sclerosis....or a tumor....etc. etc. etc." And if, God forbid, I get bad news, I need to finally accept that and move forward with treatment. If it is MS, then I obviously have to start a protocol for that to slow the progression of the disease, and if I don't, I know that I need to just keep doing what I'm doing for this "unknown autoimmune disease" that so many of you have been diagnosed with that seems to mimic MS to the letter (minus the brain lesions). Either way, I'll know.
I did get my blood work back, and everything looks okay except my vitamin D level is too low. I thought that was interesting, and I am now finding that many women who were sickened from their Mirena are also severely vitamin D deficient. What is crazy is that I have been supplementing Cod Liver Oil supplements (2 a day for months) to aid in my vitamin D, and I am STILL overly deficient. I'd hate to know how low it would have been if I wasn't taking them!
My husband looked up a bunch of information on the internet, and I was interested to see that extreme vitamin D deficiency can cause many of the symptoms that seem to have re-entered my life over these past couple of weeks--numbness and weakness in the limbs, cognitive difficulties, joint and muscle pain, extreme fatigue, etc.....
I also see that many people with MS are vitamin D deficient; however, people who are vitamin D deficient do not necessarily have MS. So........I am PRAYING that my result is going to come back as negative because I need more time. I now know about this deficiency that I can address (the doc has me taking an additional 2000 units of vitamin D3 per day until I get can my levels up) before my body gets "broken down" enough to officially go into Multiple Sclerosis. That is my prayer...."I need more time. Please don't let me find out this information and have it be too late."
Which leads me to today. My brain MRI is done, and I meet with my neurologist in two hours and 15 minutes to find out if I do or do not have Multiple Sclerosis. I'm not going to lie....I'm nervous. This day is taking forever. Please-O-Please-O-Please-O-Please.......
I got this text from my husband (who is at work):
"You are heavy on my heart and mind, babe. No matter what today brings, we are still going to live an amazing life TOGETHER. I love you more than life itself."
I'm a lucky woman. You hear that, Mirena? You didn't take everything from me.....
Either way, at 4:00 today, I am going to know (and, thankfully, my husband is going to be there at the appointment with me), and--of course--I will continue to share my journey with you all. I just wanted to give you an update and remind you again that I am here continuing to fight right along with you.
I promise to post my results tomorrow. Please pray for me as I continue to pray for all of us.
All my love and support to each and every one of you--Kristi
Let me try to do a somewhat quick overview of where I'm at.....
I've concluded that I am really great at jinxing myself. A few weeks ago, I was talking to my husband about how much better I was feeling. I had even stopped taking my Progon B (natural progesterone) for about three months, and I wasn't feeling like I was a slave to my cycle anymore. Other than the vision loss in my right eye that never returned, I was really feeling, overall, pretty good.
Then, BAM.....
A couple of Sundays ago, while packing to prepare for a family vacation in San Diego, I woke up just not feeling quite "right"....but not bad enough to really over analyze anything. I was excited to get going on our vacation, and I had a lot to do....
Within a few hours, I noticed that I was having a difficult time remembering what I was packing, or why I went upstairs, or what I walked into that room for (you know the drill).....
Then, I started feeling disoriented...almost dizzy....
Then my hands and feet started to tingle....and soon my hands got weak.
Before I knew it, I couldn't fold a pair of socks well because it was like I couldn't get my hands to do what I needed them to do quickly enough...if that makes any sense.....
By the end of the day, I was pretty emotional because--like I said--I was doing really well, and now I am suddenly thrown back into this scary, "Oh no, what is wrong with me" mental panic that the Mirena has gifted me with far too many times during the past three years of my life..... I just finally had to admit defeat, and I went upstairs and cried myself to sleep.
The next day, we still left on our vacation, and--thankfully--I felt better. Not "normal"...but much better than Sunday. It was like I felt like I had a "hangover" of some sort from whatever happened on Sunday. I wasn't suffering, but I wasn't strong. More annoying than anything. Over the past two weeks since, I still have these "bobbles" that are just off....or weak....or....whatever....just not quite right.
I told my husband that I wanted to go see my doctor about it, and he agreed that I should.
When I went to see my GP after returning home from my vacation (he has finally admitted to me that he agrees that it was something with the Mirena that made me so sick), I told him what happened on Sunday, and he agreed that--even though many of the women who have dealt with all of this regarding the Mirena ended as MS-negative--what I just described did sound like a "textbook MS flare" and that I should finally officially test for it. I agreed that it was time....I need to know for sure. Why? Because although I hardly ever think about it on my strong days, when I have a day like that Sunday, it all comes flooding back...the fear....the panic....the "what ifs"......
I'm just done with it. I need to hear a neurologist look at me and say, "I'm looking at a picture of your brain, and it looks okay. You don't have Multiple Sclerosis....or a tumor....etc. etc. etc." And if, God forbid, I get bad news, I need to finally accept that and move forward with treatment. If it is MS, then I obviously have to start a protocol for that to slow the progression of the disease, and if I don't, I know that I need to just keep doing what I'm doing for this "unknown autoimmune disease" that so many of you have been diagnosed with that seems to mimic MS to the letter (minus the brain lesions). Either way, I'll know.
I did get my blood work back, and everything looks okay except my vitamin D level is too low. I thought that was interesting, and I am now finding that many women who were sickened from their Mirena are also severely vitamin D deficient. What is crazy is that I have been supplementing Cod Liver Oil supplements (2 a day for months) to aid in my vitamin D, and I am STILL overly deficient. I'd hate to know how low it would have been if I wasn't taking them!
My husband looked up a bunch of information on the internet, and I was interested to see that extreme vitamin D deficiency can cause many of the symptoms that seem to have re-entered my life over these past couple of weeks--numbness and weakness in the limbs, cognitive difficulties, joint and muscle pain, extreme fatigue, etc.....
I also see that many people with MS are vitamin D deficient; however, people who are vitamin D deficient do not necessarily have MS. So........I am PRAYING that my result is going to come back as negative because I need more time. I now know about this deficiency that I can address (the doc has me taking an additional 2000 units of vitamin D3 per day until I get can my levels up) before my body gets "broken down" enough to officially go into Multiple Sclerosis. That is my prayer...."I need more time. Please don't let me find out this information and have it be too late."
Which leads me to today. My brain MRI is done, and I meet with my neurologist in two hours and 15 minutes to find out if I do or do not have Multiple Sclerosis. I'm not going to lie....I'm nervous. This day is taking forever. Please-O-Please-O-Please-O-Please.......
I got this text from my husband (who is at work):
"You are heavy on my heart and mind, babe. No matter what today brings, we are still going to live an amazing life TOGETHER. I love you more than life itself."
I'm a lucky woman. You hear that, Mirena? You didn't take everything from me.....
Either way, at 4:00 today, I am going to know (and, thankfully, my husband is going to be there at the appointment with me), and--of course--I will continue to share my journey with you all. I just wanted to give you an update and remind you again that I am here continuing to fight right along with you.
I promise to post my results tomorrow. Please pray for me as I continue to pray for all of us.
All my love and support to each and every one of you--Kristi
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