Worried about where this is going - 1 year 10 mo. update

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Worried about where this is going - 1 year 10 mo. update

Postby Xina535 on May 4th, 2015, 5:07 am

Currently going on in my body:

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.

https://roxythegray.files.wordpress.com/2015/05/img_7029-e1430733106340.jpg

https://roxythegray.files.wordpress.com/2015/05/img_7030-e1430733088706.jpg

https://roxythegray.files.wordpress.com/2015/05/img_7029-e1430733106340.jpg

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.
https://roxythegray.files.wordpress.com/2015/05/image_5.jpeg


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. :oops: :shock:


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. :shock: :oops: 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.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Xina535 on May 4th, 2015, 1:57 pm

I forgot to add....I AM however accepting recommendations on which clinics/doctors/specialists I should try to see when I am in the U.S. ....in the South Florida or Raleigh/Chapel Hill areas. Potentially also the Boston area.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby leroyb on May 5th, 2015, 1:14 pm

Your hand looks normal to me Xina? is there anything you can't do?

Bar the left arm I think I have had all your of your symptoms.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby nickston on May 5th, 2015, 1:59 pm

Your snuff box is SUPPOSED to be sunk in. That's why it's called the snuff box. Look it up. And some of the other spots you're concerned about have no muscle there anyway, just tendons. So it can't be atrophy. Surprised your doc isn't able to tell you this.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby leaflea on May 5th, 2015, 2:45 pm

Xina, you may not believe me and I am telling you the truth. Your hands look perfectly NORMAL in the photos. My hands have changed, too. Visible only to me, but unmistakable to me. I was obsessing about this and showed the doctor at Mayo who told me "perfectly normal aging hands." I have friends who also tell me they think their hands changed in appearance seemingly overnight. Hypervigilance. Wear gloves until you get over the need to examine them.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Xina535 on May 6th, 2015, 4:58 am

Leo/Nick/Lea,

Thank you for reading and posting your thoughts. It feels good to know there is support out there.
All of you focused on my hand out of my other issues. I appreciate the concern, but I would like to clarify a few things about it:

1) About the appearance of my hand: 4 Neurologists (one professor), 2 Orthopedic doctors, 1 Hand Surgeon, 1 Neuro Surgeon and my primary care doctor ALL acknowledge that there is "wasting" of some kind going on in my right hand. One orthopedic doctor and the hand surgeon thought it could have been because of the ganglion cyst, but they weren't sure. This is why I got the cyst removed. Only got worse. The professor neurologist couldn't explain it and said it was psychosomatic. The other orthopedic called it "atrophy" but was not sure if it was muscle or fat atrophy, and he was SURE it was a tendon issue, so he did an ultrasound of my hands and found nothing. My primary care doctor is the only one who has seen this change over the last year, from one vein being shown, to the areas becoming more sunken in. My left hand is totally unchanged. All have said this does not look like a typical MND atrophy, but NONE of them have any answer for me. So Nick, yes, the snuff box is supposed to sink in, that's normal, but how can all of these doctors all see the change in my hand and say it's something, but they are not sure what? This is slowly starting to *beep* my whole family off.

Here is a picture of the both side by side, taken this morning as comparison. Another note - it is very hard to capture exactly how things look in real life. My husband thought I was imagining things over this last year, until recently, where he really sees and can't deny the changes happening. He also sees that the camera does not show what it really looks like. Lea - since we met, it has changed a lot. If this was aging, wouldn't my other hand also be changing? You mentioned "hands" and "them" - meaning plurar, but I have nothing changing in my left hand, besides it being shakey and unstable due to my upper left arm. Also, why would I also have a change in my grip and weird sensations in my right hand that I don't have in my left? (See point #2 & #3 below).

https://roxythegray.files.wordpress.com/2015/05/img_713012-e1430904360314.jpg

2) About the function of my hand: Ever since it started changing, I felt a change in my pinching grip. It's not clinically weak, but it has been different, for a long time now. As it progressed, this feeling has becoming stronger. One of the 4 neurologists literally saw how I grip differently. He had me demonstrate me gripping my scarf in his office many different ways with both hands. He acknowledged it and ordered a brain MRI because of it (which was clean). So Leroy - the things I can't do are: pinch grip like I could before and now recently, hold things in my hand for a short period of time before my hand hurts (in the sense of being tired/fatigued) and then I have to switch to my left hand, which is also unstable due to my left arm problems.

3) About the sensory things: This is the really the only thing I am hanging on to for hope with my hand, since all doctors told me my herniations in my neck are not big enough to cause the things happening in my arms. There were times over the last year where I did have pain, sometimes burning, weird pulsing TENS like electric sensations (ex: in my palm side thenar and just recently, just the tip of my thumb). The TENS feelings still happen, but the only pain I get now is in my palm side thenar, where it is sore on it's own and even worse when it's being pressed.

Leroy - about the other things besides my arm that you have had...this is one of my points. My left arm is a major concern for me, as that is where the abnormal EMG was done. I am scared to get a full blown EMG of my entire upper body (which I think I need), because what if there are others that show abnormalities? The one neuro only did two muscles, the deltoid and the bicep. Bicep was normal. Again, what about the others? Paraspinal, shoulder, triceps, forearm? so with an abnormal EMG, that is beyond BFS and beyond anxiety or psychosomatic, right? The slurring/excess saliva/tense muscles/other twitches could be anxiety/psychocomatic/BFS, but not my left arm.

This is all why my post is titled "Worried about where this is going..."

I did get acupuncture yesterday on my left arm and felt an immediate "release of pressure" is all I can describe it as. I am going to get more sessions, so I hope a series of sessions can help. I got my first of 10 infusions this morning. It will be combined with acupuncture all done by my primary care doctor, since she believes this can help. Otherwise, I don't know where to go or what to do or who to see! Below are the things I am being infused with, hoping that the things that fight infection can help with suppressing anything that might be attacking my nerves.


Uro Loges - for bladder and kidney health. Contains Oleum terebinthinae D8, Berberis D4, Solidago virgaurea D4 und Sarsaparilla D4. I think she said this was to help detox.

Toxi Loges - to fight infections. Contains Echinacea D4, Apis D12, Ferrum phosphoricum D10, Lachesis D10, Baptisia D4 und Hepar sulfuris D10. The description says the Lachesis is snake poison. :shock:

Dysto Loges - to help reduce nervousness, insomnia and muscle spasms/stiffness. Contains Gelsemium D6, Passiflora incarnata D4, Reserpinum D8, Coffea D6, Chamomilla D6 und Valeriana D4.

Hepa Loges - for liver health. Contains Taraxacum D4, Quassia amara D6, Lycopodium D4, Myrica cerifera D5 und Chelidonium D4. I think this is also part of the detox she mentioned to me.

Pascorbin 7.5mg Ascorb/50ml - Vitamin C - to help my immune system fight infections.

Magnesium Diasporal 2mmol - Magnesium - to support muscle health and reduce tense/stiff muscles.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Xina535 on May 6th, 2015, 5:11 am

Going back to the left elbow thing:

I've noticed I can't rest my arm on anything or it hurts. I get lots of tingles/twitches weird things happening in my elbow. This seems to me that my ulnar nerve is irritated or something, and could be adding to my arm symptoms. Does anyone know if things happening in the elbow could either cause upper arm conditions (like stiff, sore muscles, twitching, etc.) or be caused by upper arm conditions (like pinched nerve, inflamed nerves from above)? Maybe this is its own thing... :?:
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Re: Worried about where this is going - 1 year 10 mo. update

Postby misterjuanperalta on May 6th, 2015, 6:05 am

Ulnar nerve is C7-T1. If NCV was abnormal, it could explain symptoms. There are some tests and exercises you can do. Ask your Dr. for more information.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Xina535 on May 6th, 2015, 6:14 am

misterjuanperalta wrote:Ulnar nerve is C7-T1. If NCV was abnormal, it could explain symptoms. There are some tests and exercises you can do. Ask your Dr. for more information.


Thank you - none of the neuros did a NCV on my left arm, not even the one who did the EMG. I want to change all doctors, except my primary doctor (although, my family is POed at all of them).
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Re: Worried about where this is going - 1 year 10 mo. update

Postby leroyb on May 6th, 2015, 6:42 am

How is your thenar Xina? If you want to see something really scary I'll take a pic of my left thenar.

Oh and my elbow is so sore if I rest on it on the desk while I am working.

I think I remember reading/being told that the thenar and hypothenar would have similar damage as both are enervated by the same nerve if it was something sinister. Now that could be wildly wrong so if TD or someone else could clarify please do.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Xina535 on May 6th, 2015, 6:52 am

Leroy, I am not here to compare anything or say that yours is not atrophy or that it's worse than mine, etc. I don't even know if this is atrophy and if so, what it is (fat or muscle or both)? I am just posting that there are changes in my right hand, seen and acknowledged by many and felt by me, and it is progressing, but no reason. All atrophy has to start somewhere. I am sure whatever stage your thenar atrophy is at, it was once not as bad. Also, I am very sorry that you have it. Do you have a reason for it?

Did you mean that you can't rest your elbow on your desk while working? And is this on the same side as your atrophied thenar? If so, I am getting to be at the same stage, with resting my elbow, only, it's on my left arm, not on my right.

PS - no change in my palm side on my right hand in appearance, other than, sometimes the thenar area looks a tiny bit red to me, when it is sore. My concern is not there, otherwise I would have posted pictures of it. My concern is on the back side of my hand and thumb knuckle. Sometimes it seems to me like there is a feeling there that something is EATING my thumb knuckle. I can't really describe it. Almost like there is a mild acid under my skin aggravating and dissolving my thumb knuckle, but does not burn. That comes and goes.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Xina535 on May 6th, 2015, 6:56 am

leroyb wrote:
I think I remember reading/being told that the thenar and hypothenar would have similar damage as both are enervated by the same nerve if it was something sinister. Now that could be wildly wrong so if TD or someone else could clarify please do.


I just saw this part after I posted my other reply. Really?!? I hope that is true, and if so, why would I be told that on here and not from ANY of the doctors I've seen? What the HE**!? Anyone reading this have knowledge about that?
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Re: Worried about where this is going - 1 year 10 mo. update

Postby leroyb on May 6th, 2015, 6:58 am

I'm not dismissing your concerns at all Xina. There is something there that is not bfs or anxiety and I believe that applies to me too but I've been told no mnd.

Yep on the same side. Feels like I'm pinching the nerve against the table if that makes sense.

I am very sketchy about that part Xina. I think I heard that or read it.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Xina535 on May 6th, 2015, 7:02 am

You've been told no MND - so does this mean you also have no reason for the atrophy? And it does make sense, the pain is MAINLY there for me in my elbow when it is pressed, although at times, it will aggravate me/be sore around my elbow when it is not pressing against something.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby leroyb on May 6th, 2015, 7:07 am

Yep I showed my hand to Dr Orla Hardiman and her assistant and they clearly saw it didn't look right but they did strength tests etc and said no mnd. Not even required to do an emg. I wanted to argue but they've seen over 2,000 cases so I didn't. I'm in touch with Gary (readytocheckout) on here and I'm sure he won't mind me telling you that he has noted atrophy all over as noted by several different doctors and he had an extensive emg recently of prettty much everywhere and no mnd. They can't explain it but they said no way mnd.

Edit: oh yes, I actually don't believe any of the neurologists i have seen and remain convinced I have some extremely unusual form of mnd
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Re: Worried about where this is going - 1 year 10 mo. update

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