Christmas I continued to struggle with energy and feeling like I was just a lazy piece of crap. Decorating the house, making treats for the neighbors, going to see lights... everything was hard work for me. More often than not I would get home from work and collapse in to bed for an hour or two. Even having to stop at a grocery store made me cringe.
Then in January I started having some neuropathy in my left leg and foot. If you don't know what that means, it is a fancy word for numbness, tingling, weakness and sometimes pain from nerve damage, usually in the hands or feet. I originally thought it was plantar fasciitis. I had a painful spot in my foot and when I wore better shoes it seemed to subside a bit, but if I wasn't wearing shoes it felt like I was walking on marbles. This completely frustrated me because I was trying to walk daily to get my energy up and I couldn't because my foot would get so sore.
Then in January I started having some neuropathy in my left leg and foot. If you don't know what that means, it is a fancy word for numbness, tingling, weakness and sometimes pain from nerve damage, usually in the hands or feet. I originally thought it was plantar fasciitis. I had a painful spot in my foot and when I wore better shoes it seemed to subside a bit, but if I wasn't wearing shoes it felt like I was walking on marbles. This completely frustrated me because I was trying to walk daily to get my energy up and I couldn't because my foot would get so sore.
Hubby and I decided we needed a long weekend to reset and booked a trip the end of February to Zions National Park. While we were there, sleeping on the most uncomfortable bed I had ever slept in at a hotel, my left arm, side and hand started feeling numb too. I thought I had just slept on it wrong at first. My back was sore, the bed was lumpy and hard... so while we had a wonderful trip, doing some light hiking and lots of good eating, we ended up leaving a day early simply because the bed was horrific and my body wanted a good night sleep back in my own bed.
When we returned home, my lower back was sore for a bit, and the neuropathy continued to creep across my whole left side. The biggest frustration for me was that it was starting to affect my piano playing, especially with my left hand runs, so I finally made an appointment with the my nurse practitioner. She put me on a quick, strong dose of oral steroids and within a few days, the feeling was back in my leg and foot, but my hand and arm were getting worse. Additionally I had started getting this horrible "zinging" sensation in my spine whenever I pushed my head downwards. It felt like an electric shock going all the way down in to my pelvic area. Sometimes it would shoot down my arms too... a very scary sensation.
My nurse practitioner was out of town for about 2 weeks, so I made a follow up appointment for as soon as she got back, and she put me on a second dose of steroids and set me up for an MRI of my neck with the thought that it was maybe a pinched nerve or a herniated disk causing me all this grief.
I had never had an MRI before, so to say I was extremely nervous would be an understatement. I am pretty claustrophobic, so they gave me a valium to help calm my nerves, but when I walked in there and saw how small the space was that they were going to squeeze me in to, I was still a little panicked. The staff at Lone Peak Hospital were wonderful. They placed a panic button in my hand that I could squeeze if I couldn't take it any longer, they put earplugs in my ears to block out some of the drumming noise, but they also put a washcloth over my eyes so that I didn't see anything while I was being moved in to the space or the MRI was taking place, and honestly, THAT was what made ALL the difference. All I saw if I opened my eyes was bright light that gave the affect of having all the space in the world. The drumming didn't bother me at all. I guess that is a blessing of having a drummer for a son. :) I just found myself imagining him playing the drums and following along with the beats. It was all over with pretty quick, (I did catch myself snoring at one point), and it would be just a few days wait for the results.
The waiting time is the worst. We were pretty sure that it was just a pinched nerve or herniated disk, but as usual I had looked things up online, freaked myself out and was 90% sure I was dying of something. In fact... in reading about ALL my symptoms that I had had over the past few months, I got a pit in my stomach when I read that I had experienced just about all the symptoms of someone with MS! To know me is to know that I always think the absolute worst of any situation, so my dear hubby helped talk me down off the ledge I had perched myself on, after all, M.S. is pretty rare... no way that was what it was.
My nurse practitioner was out of town for about 2 weeks, so I made a follow up appointment for as soon as she got back, and she put me on a second dose of steroids and set me up for an MRI of my neck with the thought that it was maybe a pinched nerve or a herniated disk causing me all this grief.
I had never had an MRI before, so to say I was extremely nervous would be an understatement. I am pretty claustrophobic, so they gave me a valium to help calm my nerves, but when I walked in there and saw how small the space was that they were going to squeeze me in to, I was still a little panicked. The staff at Lone Peak Hospital were wonderful. They placed a panic button in my hand that I could squeeze if I couldn't take it any longer, they put earplugs in my ears to block out some of the drumming noise, but they also put a washcloth over my eyes so that I didn't see anything while I was being moved in to the space or the MRI was taking place, and honestly, THAT was what made ALL the difference. All I saw if I opened my eyes was bright light that gave the affect of having all the space in the world. The drumming didn't bother me at all. I guess that is a blessing of having a drummer for a son. :) I just found myself imagining him playing the drums and following along with the beats. It was all over with pretty quick, (I did catch myself snoring at one point), and it would be just a few days wait for the results.
The waiting time is the worst. We were pretty sure that it was just a pinched nerve or herniated disk, but as usual I had looked things up online, freaked myself out and was 90% sure I was dying of something. In fact... in reading about ALL my symptoms that I had had over the past few months, I got a pit in my stomach when I read that I had experienced just about all the symptoms of someone with MS! To know me is to know that I always think the absolute worst of any situation, so my dear hubby helped talk me down off the ledge I had perched myself on, after all, M.S. is pretty rare... no way that was what it was.
Well, finally my nurse practitioner called with the results, but unfortunately it wasn't the news I was hoping for. There was no pinched nerve. I had some spinal stenosis, which is narrowing of the spine at the top which could cause some of the neuropathy, but what they were most concerned about was that there were also a few lesions on my spine, one of which was 9mm long, which was in her words... "characteristic of MS". She immediately put in a referral for a Neurologist for further testing and diagnosis, and several weeks later I was set up for an MRI of the brain. Another bit of a scary experience, but this time they gave me two xanex which totally helped me calm down. (This MRI included dye pumped in to my brain through an IV, so needles and small spaces... the perfect anxiety inducing combination for this gal! :)
I had to wait 8 days to hear the results of the second MRI which was a little frustrating, but after having met with the Neurologist and giving her a rundown of all my symptoms, we were hoping very much that this was just a one time infection that had "tricked the body". Not so lucky. They found some vague white matter near the ventricles. I'm not going to lie, her words over the phone punched me in the gut a little... "This is M.S." That was today, June 15th. She then went on to tell me that the next step was to do a lumbar puncture so they could do a "cerebrospinal fluid oligoclonal band test". Basically, it looks for inflammation-related proteins in the cerebrospinal fluid that are not present in your blood. It will give us the last piece to the diagnosis.
I'll admit that I've been in a bit of denial throughout this process. Even as of today, I haven't done a ton of research on MS. I just keep telling myself that if there is any small shred of possibility that I DON'T have MS, then I will just hold on to THAT. So now, I am hoping that the results of the lumbar puncture show it isn't MS. I'm not losing that hope. The lumbar puncture is set up for this upcoming Monday. I'm scared as hell of that procedure so I've already had a blessing. I then have a follow up with my neurologist the following Tuesday to go over the results. Here's hoping for miracles!
Ironically, I came across this meme today which I haven't been able to stop laughing about...
Hey life, I don't want your damn lemons!!!! :)
I'll admit that I've been in a bit of denial throughout this process. Even as of today, I haven't done a ton of research on MS. I just keep telling myself that if there is any small shred of possibility that I DON'T have MS, then I will just hold on to THAT. So now, I am hoping that the results of the lumbar puncture show it isn't MS. I'm not losing that hope. The lumbar puncture is set up for this upcoming Monday. I'm scared as hell of that procedure so I've already had a blessing. I then have a follow up with my neurologist the following Tuesday to go over the results. Here's hoping for miracles!
Ironically, I came across this meme today which I haven't been able to stop laughing about...
Hey life, I don't want your damn lemons!!!! :)
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