Wow, so I can’t even explain how frightened I am about having my feelings out in the open. I am not a touchy feely person to begin with. Very passionate, but not usually open about it. So having it out on the internet is beyond anxiety-producing. I have had to seek out quite a bit of affirmation from others in order to do it. How do people write like this all the time? It is definitely not something a control freak like me should be doing!
Anyway, moving away from that bit of fear, let’s move on to the next one. I have an EMG/NCS tomorrow and I am beyond nervous. I think most of the nerves are from the unknown. You know, doing all these tests and labs but not getting any information on the results for 6 weeks!!! It’s driving me mad. I have to be frank though, I am a bit nervous about the whole thing involving needles with electrodes being placed all over my leg muscles and then having them shock me over and over for a total of 30 minutes. I’m told it can be painful, but not overly so. OK. I’m pretty good at dealing with pain. But I have never had my muscles shocked and I am pretty nervous about it! Either before or after that, they will shock my nervous system in the same manner. Thankfully those electrodes are not attached to needles! All of this is part of diagnosing the muscle issue that my doctor believes to be Polymyositis.
So why do they choose the leg muscles? They do this because with Polymyositis, the weakness/problems start with the muscles that surround the torso. So shoulders, hips, thighs… you get the idea. It can go beyond them, but it always starts with them. So we are starting with my thighs (maybe hips too?). The order actually says “lower right extremity.” Not sure if that includes the hip. They are trying to determine why I have pain and muscle weakness. This is the EMG part where they shock the muscles. They send the shocks into each muscle, one at a time. This gives them information on how my muscles are responding to stimulation. Basically, like re-creating a signal from the brain to the muscle. The pamphlet said that they put audio to these results and it can sound like hail on a tin roof. I think that hearing hail is bad.
The NCS part of this is testing the neurological end. Basically trying to see if there are any miscommunications, misfiring, etc. of my nerves. So, it is possible that the pain and weakness come from something being wrong with my nerves.
These two results will determine whether or not I get a muscle biopsy. The muscle biopsy is done to see if you have any necrosis, as well as to help determine if you have a different condition masking itself as polymyositis (or the other way around). It seems that these things are incredibly complex to diagnose. But, I guess we will know a little more in a few days. At least we will know what it feels like to do these things!
Guys, I cannot even begin to explain how frustrated I am that I can’t organize this health blogging in a coherent way! So, I’ve reverted to my Israeli days. I am just going to have to do it in chronological order. Sorry that it isn’t organized by topic, Godly moments, and such, but this roller coaster takes too many turns to do that!
So what has me writing again today? Well, it hit me how much God has surrounded me with good Godly people. I have two friends (both very far away from me) who are wonderfully supportive and non-judgmental. Very important during high-stress times as we all know that sometimes our thinking needs a little adjusting! There are people in my church who have reached out to me in ways that are so helpful. People who pray for me (and they really do it!), people who are close by to help, people who have autoimmune diseases and have offered their support, and the list goes on.
So often, due to the craziness of our life and the rate at which we had been moving, we (myself and my family) have felt so isolated. It is especially isolating during times of difficulty. You never know how people will react to things like this. Here, the support has been tremendous. There have been men that have reached out to Clay (my husband) and his work has been supportive of letting him go to important doc appointments with me. It is really such a blessing.
God has always made sure that we had people around us to help. I remember the time in TX when I had to get some exploratory surgery done. The army would not let Clay take off work. I had no one to watch our toddler and no one to do after care with me (a two week endeavor). My parents were able to come for part of it, but there were big gaps. That’s when God moved. Clay got off work for two days (one to take me to surgery and one to take me home), my parents came (from KY) for the time they could, and a wonderful lady from church, who we had recently gotten to know, brought food (I was not allowed, nor able, to cook). My recovery was so piecemeal, but it was completely orchestrated by God.
I guess it is just amazing me how much God does make sure the details are taken care of. It seems like organized chaos to us (sometimes without the organization), but it is all to his plan. With all the doc visits, labs, and procedures, it will take God to keep it all together. It is so nice that the Holy Spirit brought these thoughts to mind today. I needed a reminder that God does take care of us, even in the details.
So, the EMG and NCS were done on Wednesday. Let’s just say I’d rather not do that again! Yes, it did hurt but not overly so. However, it was extremely uncomfortable and I do not like the fact that my body parts were reacting on their own. The NCS was done first. They put a shock through my nerves in various places on my leg. They stayed below the knee. Thankfully, they did not see anything that made them want to continue on my other leg! The shock felt like a burn through the nerves. You could literally feel every nerve! Visually, it would be like a lightning bolt that splits and splits and splits all over the sky. Or an upside down tree without leaves. The current would make my foot (sometimes feet) twitch or jump off the table. This burning lasted for a few hours after the appointment. The technician said everyone is different. Some sleep through it, others have pain, others have burning, others go numb… everyone is different. However, there is not enough current to cause damage. I don’t remember what my report says, but it was VERY small amount of volts. Doesn’t mean it doesn’t hurt, but it won’t do damage. The technician said the amount of volts is the same as static electricity when it makes your finger throb. So a really hard static electricity is the same as what they give you during the NCS except they deliver it straight on your nerves.
The EMG went better in my opinion. It was more “normal” feeling in that it was pain I was used to. If you have ever received a shot that has left a knot under your skin, that is what it felt like afterward. My muscles felt bruised. For the EMG, they went all over my right leg and hip. However, after speaking with me, the doctor decided to also do my right arm, my neck and my back. Not sure if it’s relevant or not, but I didn’t even feel the needle in my neck. (yikes!) I’m guessing that’s residual damage from my back surgery?
Anyway, both tests came back with no damage to the nerves or muscles. The tests also confirmed that all pathways were working properly. So I am guessing that means there is no necrosis. I have no idea what this means regarding a diagnosis, but it is nice to know that my nerves and muscles can work properly. Now we just need to figure out why they won’t work properly and why they hurt all the time.
I was very blessed to have my father-in-law and his fiancé help me out this day. He watched my daughter while she went to the doctor with me. It was nice to not have to go alone. Plus, it is always good to have someone else there to hear what the doctor says. I felt kind of off the rest of the night but by Thursday morning, I was good to go.
Of course, Thursday morning is when everything fell apart. You see, that’s the thing with all of this, things fall apart randomly. I was feeling ok when we got up. Not great, but I could function. And believe me, those functioning days are hard to come by lately. However, my daughter was not on the same page. Emotional stress caught up to her (and probably a sugar crash from all the sugar she had from grandpa!) and we had some issues. Dealing with that completely depleted my strength for the rest of the day. Literally, one incident with my kid took out everything I had! I was in bed the rest of the day. Not just in bed, but in bed almost unable to move my arms and legs from the extreme fatigue. I hate days like this!
Of course, my daughter thought it was her fault and we had to work through that. (we did it lying in my bed!) This thing effects my family just like it effects me. And I think because I am usually very cerebral, logical, etc., it really bothers them to see me emotionally upset. And I seem to get emotionally upset over the weirdest of things. But yesterday, being stuck in bed all day, not being able to move around, really made me mad. And once I was done being mad, I was sad. All in all, Thursday was an exhausting day. And I have scientific proof for that as my Fitbit showed I got the best rest Thursday night going back a month! (lol)
So that brings us to today. Today has been ok. Fatigued, but able to get through the day. Just trying to get all my ducks in a row. I finished giving blood today. I think this was the third time this week I gave blood. Thankfully it is the last. For now anyway. My EMG and NCS results are in the system and we should have my blood work back from CA by the end of next week as well as the other blood work that’s been ordered. Now I wait.
This is torture for me. I like things to move efficiently and I like to know what’s going on. But there is nothing I can do until March 25th, when I see the rheumatologist again. She is the gatekeeper to all the information. It is possible that she will call me before that appointment time, but I think that is only if something is urgent and has to get dealt with immediately. Or if she has to order more tests. But, there’s nothing to do now but wait.
To see what I am doing to manage my symptoms and to see the timeline of events, go here.