For starters my MRI brain scan came back fine. No lesions. There was one abnormal blood vessel that the technician noted by my neurologist thinks it is a structural difference and not a concern and could in no way be causing my symptoms.
The MRI images were fascinating! It was like looking at a 3D animation of my brain as she quickly scrolled through the layers of images. I think I was extra amazed because I was looking at my OWN brain!
So all the tests so far have been normal and have not indicated any condition that could be causing my symptoms. I have had many blood tests so far including ones for vitamin deficiencies, thyroid conditions, Lyme disease, and there were more. My PC and my neurologist have both told me not to google my symptoms and while I think it is not a good idea to obsess, I am done taking a passive approach. I am requesting all my lab results so I can follow along and educate myself.
My next tests are a 24 hour urine test for heavy metals and more blood work including a test for Myasthenia Gravis, a protein electrophoresis serum test which can indicate several conditions including Multiple Myeloma, a CPK which tests for muscle damage, and a Anti-SSA AB and ANTI-SSB AB which test for Sjorgren’s Syndrome and Lupus (although I think I already had a test for that).
I feel like I could deal with anything as long as it is not ALS which is a fatal degenerate nerve condition that affects a person’s voluntary muscles that eventually makes it difficult to breath and has a 3-5 year life expectancy. I just couldn’t leave my kids. But good news is I have lots of unusual nerve sensations which do not appear to be associated with ALS.
My neurologist has told me she has not ruled out anxiety as a large factor in my condition and while I would love for her to be right, because then there really would not be anything wrong with me, I don’t think she is. I think I am just not that powerful nor am I that anxious. My husband doesn’t think it is anxiety and my mother and sister do not anymore either.
So what an I experiencing?
There are things that are consistent and things that are different everyday. There are about a couple days a week that I feel almost normal, maybe 80 percent strong but then it comes back. There are also about a couple days a week that something new or extreme happens. For example on Christmas Eve and Christmas Day my my speech was quiet, muffled, slow, and slurred. It was surreal for me and I could tell it upset my mother. Eating was also extremely hard. I had to eat slowly and take chewing breaks half way through one piece of food. I have been having nerve sensations and muscle weakness with eating and talking for a while but these two days were extreme. Last night I had a brand new symptom. It was they first time I have had any join pain. The second knuckle on my left ring finger became painful. I couldn’t bend my finger. Then most of my arm became very hot and cold and I got painful pins and needles throughout that hand and arm. Then the first knuckle in my pointer finger started to hurt. It was like a battle in my arm for a couple hours. Then like most of my symptoms it improved. I still have tingling and pain in that knuckle, about 60 percent better but not completely. My “normal” seems to be lots of tingling and weakness in my limbs that causes shaking from normal activities like standing, taking a shower, or holding a big glass of water. Late in the day I often get muscle pain in my left forearm that feels like I am holding up a heavy weigh and can’t put it down (when the muscle is actually perfectly relaxed). Also I get fatigue from talking and eating. Another symptom that is with me daily is intermittent numbness in the fingers of my right hand and butterfly like muscle twitches all over.
Strange, right?! Nothing I couldn’t just deal with but I should continue to try to find out what is wrong. Maybe there is a cure for what I have or a treatment to keep it from getting worse. At the very least I would like to know what I am dealing with. Or maybe it will just get better on its own. My neurologist said this is a real possibility.
Does this thing have a positive side? Yes! And actually it wasn’t that hard to find…
I am eating even more fruits and veggies and exercising more. I am learning about interesting medical stuff. I am feeling stronger in other ways and maybe I will even lose a few pounds! Although it can be a little painful sometimes and a little scary others, overall it’s nothing that prevents me from enjoying life.
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Aside from all THAT, we are having an awesome Christmas week! How’s yours? Please share!