Several weeks ago I had the EMG/NCV of my legs and I pretty much got the answer I was expecting. The test showed absolutely nothing. SURPRISE, SURPRISE…..yeah right! The thing that I wasn’t expecting was what the Dr. told me next. He said that even though it’s rare for the test to show a false negative result for nerve damage, it can happen. I don’t know if you can imagine how that felt.
That’s right, relief. I found a Dr. who not only believes me, but understands also.
Wow, more than one those do exist!
and to finally hear the words
“I believe you!”
it’s not something that someone like me who has had the issues I have hears very often and I can’t even express how much I needed that.
Usually I get a negative reaction or a feeling of there’s nothing they can do for me and I was ready to give up on ever feeling better, but Dr. Wagner changed that for me. It actually gave me the feeling that I don’t need anyone else to validate the symptoms or even give me a cause for them.
For that reason I don’t know how much more time I’m going to invest in getting a diagnosis. I think that knowing that someone believes me is enough and I’d rather just focus on controlling the symptoms. I don’t have that need to prove anything anymore and that is such a great feeling.
A little over a week ago I had a 4-5 left-sided trigger point SI injections shots in my back. That was the most painful injection I’ve ever have had. The Dr. thinks the hip pain I’ve been having has to do with my Sciatic Nerve so I had to suck it up and get it done. I just wanted to be able to move without having to worry about randomly screaming my lungs out and scaring anyone who happened to be around me. Although I still have some of the pain, that goal seems to have been accomplished. I’m thinking that I may need to have the injection repeated. I know that it can take a few injections before you get the full affect. At least that’s have it was with the Caudal injections.
Even though the numbness started in my hands I wasn’t having any numbness in that area the day of the test. I even thought to myself how funny would it be if that test actually showed something. What do you know….. it did! I guess I have mild to moderate Carpal Tunnel in both hands. Honestly I just think I’m backwards and you know what?
I’m okay with that!
I think that actually makes me kind of special:)
So now I have to decide whether to have that nerve biopsy or not. I’m a little scared to have one done because of what I’ve read about it. From what I understand the nerve is exposed and carefully divided into its many fascicles. Each fascicle is tested electrically during surgery to determine if it carries motor or sensory function, it then is covered with an occlusive dressing which is removed after 3 days, revealing some stickers underneath. These stickers are left in place until you see your surgeon about one week later for a wound check. My biggest concern is there could permanent nerve damage as a result of having this test, but it may be necessary if the numbness I’m having keeps spreading. This may sound funny and is very annoying, but lately I can be bare footed, but the numbness that has spread from my feet up into my legs makes me feel as though I’m actually wearing boots. Even when I do have shoes on, it won’t matter how straight my socks are on or if not a speck of dust is in my shoes, it feels like somethings not right such as my socks are scrunched up or rocks are spread throughout the entire shoe. So you probably can imagine why I only wear shoes on as a need to basis.
I hate to admit it, but I think I need to put my pride aside and start looking for a walker. Recently I had to use my old one since I couldn’t walk the distance I needed to without something holding me up, but I was embarrassed by how people looked at me with pity. The thing is I need to start accepting the fact that it is going to get worse. Eventually I’m going to be almost completely hunched over. I have what is called flatback syndrome due to failed back surgery. Right now the surgery to repair it only has a 47% success rate and I don’t like it when the odds of ending up worse is greater than the odds of getting better. Not even worth it, doing fine getting worse on my own. Still can’t believe that fixing my scoliosis caused me to have a spine that is now too straight. The fact is I’m so straight, I’m falling over, lol. I am looking forward to getting a scooter one day. I already made plans to race the kids!
Well, that is all for now. All I can do is take one day at a time and I will and get through each one, just like I always have.