Right hand - has been sinking in slowly over the last year around my thumb knuckle/snuff box/between thumb and index finger. Doctors and other people acknowledge it, but no doctor can tell me what is going on. They all just say it does not look like MND atrophy. Here are two pictures. I DO HAVE a different, weak pinching grip, but it is not "clinical". I've had this different grip since it started changing. Lately, something new: anytime I hold a hair dryer or like I have this window washing machine - my hand tires quickly, especially the palm side thumb thenar, and causes like a burning, fatigued pain and I have to switch hands. This is telling me that whatever is happening with my hand is progressing. It does NOT twitch though. Hardly. 1-2 per day, but not every day. I had a ganglion cyst removed, because that was the only thing any doctor could blame this change on, but since it's been gone and all is healed, it has gotten worse. When I do a push up type movement, where I press my body weight on the palm, the thenar on my right hand hurts like he** and I can't do it. I DO have some weird sensory things happening at random times where it feels like a TENS unit pad is on it. The same path/spot will vibrate/pulsate with like an electrical feeling that the TENS gives you. Then it stops. I get a ...not sure what it is...a vibration? fine twitch that I can't see but I can feel?...on the side of my index finger, at the base, the side towards my thumb. This comes and goes too.
here is the best picture I can take which shows how the snuff box is sinking in and one spot between the thumb and index finger. It is hard to capture what it really looks like on camera. The muscle itself has not changed, nor has the palm side thenar, from what I can tell, but the thenar is sore.
Left arm/shoulder - this has been a mess. Clinical weakness, abnormal EMG (positive waves, fasciculations, increased action potentials), diagnosed by one neuro with plexus neuritis and by other two neuros that this is not what I have, but they don't know what it is. It started with lots of pain in my arm in Dec., and I still get it from time to time. Some strength came back after cortisone therapy and was ok for a bit, but I am feeling like it is getting weak again like how it was before the cortisone. I have lots of areas in my shoulder and arm that are sore in the sense where they are really tight/stiff. This worries me. My upper arm and back twitch all the time. One good thing, I had a constant twitching in my forearm, non-stop, for weeks - and that has stopped completely.
Left elbow - newly discovered - when I press on a certain spot or when I press it against a table, it hurts like he**. It's right by one of the bones. It's not red or swollen and only hurts when I press on the area (so of course I don't do it). I only found this when I was pressing along my arm to see where everywhere it was sore. When I press around the area on my right elbow, it does not hurt.
Right shoulder - this is new - is also getting really tense and stiff. My whole neck/shoulder area on both sides are stiff and it hurts to move around. Gabapentine for the nerve pain does not help this pain. Nothing else has helped. Not heat, not physiotherapy, not TENS, not any creams, not Flexeril. The whole area is rock hard. And my right shoulder is starting to twitch constantly (as opposed to the random, bouncing around twitches).
My right cheek - for months now, I've had a tingling and light twitching of my right cheek (comes and goes), by my mouth and I'm having to constantly wipe saliva away from the right corner of my mouth. No idea what this is.
My tongue - new - I felt some pops of my tongue in my mouth and I've stumbled over words, where I would have to start the word over or I don't complete the word all the way.
Body wide - still get the random twitches all over
Tests/other:
- Brain MRI in April was clean.
- EMG of my right hand thumb thenar in Feb was normal (but I don't know if I can trust the neuro)
- Cervical neck MRI showed two herniations, but 3 neuros and 1 neuro surgeon agree that the hernations are not the cause of any of my arm problems.
- MEP and SEP in Jan and Feb were normal.
- ANA has been positive since it was first tested in 2012. A low positive: HEp2-IgG = 1:160, Pattern = homogenous - but all doctors are not sure if this is "just me" or is this is related to any of my symptoms.
- My immune blood work was not normal recently, but it could have been due to the cortisone. Tests will be repeated.
- My TSH was low normal, 0.67 mU/L, and one neuro said he wanted that repeated, but my primary care doctor was not concerned with the value.
- Lyme test results in today - negative
- Vitamin B12 is normal (346 ng/L), and the holotranscobalamin is normal (69.1 pmol/L)
- I have been diagnosed with GAD, depression and psychosomatic disorder and am taking Prozac 10mg in the AM and Opipramol 50mg in the PM.
- Family history: My mother and her half sister are breast cancer survivors, my grandmother on my father's side survived stomach cancer, my grandfather on my mother's side suffered many strokes and also had problems with his thyroid, my mother's cousin on her father's side has a serious neurological problem (we do not know exactly what it is, but last time we visited him last year he couldn't speak, was slurring - we think myathesnia gravis, since his wife mentioned the word "gravis" to us). My mother has fibromyalgia, neuropathy and thyroid issues, but are all considered to be due to the intense chemo therapy she went through. My father has had some heart issues, and a major abdominal aortic aneurysm surgery behind him.
- I went back to the gym yesterday to do very very light exercises, and I was shaking all over, even just from standing and trying to stretch my thighs, I was wobbling and shaking.
What goes through my head as long as I am awake:
What is going on!?!? This is not just BFS or psychosomatic. Are any of these symptoms related to coming off of cortisone, like the outbreak I have on my back/chest? Are any related to the herpes virus that broke out on my lip right before the pain started in my left arm? Could this be something auto-immune or related to thyroid stuff? Cardiovascular problems? Is my thumb just overused? Could any of this lead to MND - with this tight/stiff muscles, twitching, weakness, sinking in of my right hand, tongue/stumbling? Where do I go next? Who do I need to see? What tests do I need? I can't believe so many doctors and no one knows! Maybe I have multiple things going on and these are additional things to BFS? I am trying to move on, doing all that I can to relax and do fun things (massages, sauna, reading books in the sun, going to concerts, vacation get aways with my husband, etc). Should I go to the US and seek treatment? If so, who? Am I not going to the right people here in Germany? Is 1 year, 10 months since twitching started long enough to clear out bad stuff, or does that not even apply to me since I've had an abnormal EMG? I feel like I need to submit all of this to an expert of some kind...who? A rheumatologist, a MND doctor, a different neurologist, an orthopedic doctor? And where, here or in the US? Until then, I can only try to treat and record my symptoms and of course, OBSESS.
I mean, from where I was 1 year and 10 months ago, this has progressed beyond just random body wide twitching! I am not expecting anyone on here to respond, or to answer these questions. I am just posting to update where I am and what is going through my head. I also find it helpful to post things on here, collect any opinions and then use the posts to go back to as reference.
