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planningguy

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I thought long and hard about a new thread title, but couldn't really come up with anything. So you get what crossed my brain after a long day at work. For those who haven't read my other thread, basically this is kind of a new page in my thinking and approach to figuring out what's going on in my body. I also thought that by writing a little about it here some of those who are nervous could take heart in knowing that there's a whole world of treatable possibilities out there.

Basically I've decided to put together a matrix of possibilities matched to my own personal symptoms. I was really hesitant to do this at first because I didn't want to come across as a hypochondriac obsessed with every little ache. That's not how I see myself. The truth is that based on what I have read in these forums, I feel the need to be more proactive in the diagnosis process.

My local Dr. and neurologist felt that my condition might be autoimmune, yet the specialist I saw at the U of U felt that possibility had been excluded. The frustrating part was, I didn't know why. I didn't know exactly what he was referring to, and I wasn't clear on what avenues had already been explored. It was a piece of medical opinion that floated by so quickly with the stream of others that I didn't even ask a follow up question.

The next steps for me are a muscle biopsy and a trip to the rheumatologist (Currently scheduled for October 9th). I've been told that the muscle biopsy is to exclude a metabolic disease process. Although my right side feels weaker, the U of U specialist wants the muscle taken from the left quad. He said that the results from the biopsy should close the door on muscular disease (The EMG of my right side and one point on my left leg was "normal" for which I am grateful, though I am interested on reading my chart when I gets here later this week).

So while I float along waiting for the next step, I had a couple of symptom questions for my "matrix." For those of you who might be reading this for the first time, please understand that these are just a couple of questions regarding a handful of symptoms. They are not the primary symptoms that concern me (significant muscle fatigue, weakness, cramping, and difficulty swallowing are among those that do), and my docs are not even thinking ALS right now. And so...:

1. I have a constant vibration feeling that goes on in my body, sometimes like a phone ringing. It's usually in my legs, but I feel it in my arms as well. I had written it off as being sensory, but a few times when I have glanced at the part of my body experiencing it I have realized that a muscle was contracting a couple of times a second for the duration of the "pulse." Is there a specific name for this type of twitching?

2. Sometimes my muscle twitches cause involuntary movement. I thought this was called clonus, but that seems to be more dramatic and involve large muscle groups. For me its been a smaller muscle group in my forearm and my thumb. Is it possible that the twitch is just hard enough or triggering a reflex?

3. I hate to drag this one up, but I am curious. Does it really matter where the twitching is? My twitching tends to be pretty global (Arms, legs, trunk, and face), but the fasciculation is more limited to my calves and shoulders. I also now have tongue twitching (though not wavy fasciculation that I'm aware of). The only reason that I ask this is in the Mayo Clinic's ALS synopsis they list among the symptoms, "Muscle cramps and twitching in your arms, shoulders and tongue." I realize the goal of the website is more to let people know when to start thinking about seeing a doctor, but the areas seemed pretty specific (and limited to the upper portion of the body).

That's all for now. Any thoughts would be great.

Robert
 

wright

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Hello Robert

Your endeavor is a huge one and I wish you luck with it. I don't want to be pessimistic about things . . . but I must say that without a great deal of medical knowledge, it simply cannot be complete. It is absolutely mind-boggling how many diseases and syndromes there are out there that even specialists don't have a complete awareness of. If you could put all of their minds together, then maybe they could come-up with a close to exhaustive list. Having said that, I do think you should continue with it and do your very best to make it as complete as possible.

I'm also a little confused as to why your latest neuro has dismissed your condition as being autoimmune. Many of those diseases are very difficult to "catch" no matter how many tests are performed. On top of that, you are now going to go see a rheumatologist . . . and they specialize in autoimmune diseases. I read over your initial thread . . . and I still think you have some type of post-viral autoimmune problem. Of course that is merely my opinion, but I think given your symptoms and how they progressed, I think it is a viable one.

Now for your questions:

1) Twitches can manifest in many ways. It could have also been coincidental that you saw those twitches as you were having those vibratory sensations. Large fiber myelinated sensory nerves are responsible for the vibratory sensations we are able to feel, so it could certainly be a neuropathy that is affecting those types of nerves.

2) The movement of limbs as you describe is called myoclonus and not clonus. The non-pathological kind are hypothesized to be caused by a release of muscle tension. Myoclonus doesn't sound like what you are describing, though. Are your fingers moving as your forearm muscles twitch?

3) It doesn't matter where the twitches are. Any type of skeletal muscle can twitch . . . whether it be from ALS, BFS, neuropathy, etc. Many times you will also hear that tongue twitches are more indicative of ALS and that is complete BS . . . not to be confused with BFS. :-D

I would like to finish this post by saying that I have to agree with your physicians: your symptoms don't sound like ALS. Keep hanging in there and I truly think your matrix idea is a good one.
 

planningguy

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Hi Wright,

Thank you for your quick and informative response. I know the matrix is a huge undertaking. I never expected it to be anywhere near comprehensive. I just see it as an opportunity to be better informed and involved. Thank you for the encouragement.

I still don't know why the specialist made the comment about autoimmunity, especially since he concurred that my next step should be to see a rheum. At first I thought I had misheard him, but my wife was in the room taking notes and confirmed what he said. My only thought is that he may have been speaking to a very narrow window of muscular diseases. I'll try to comment more after I see his notes (Office assistant said they were just waiting for his review and signature).

The involuntary movement in my forearm does cause some of my fingers to move as well (my ring finger mainly, if I recall correctly). I doesn't happen very often, but was a new one that surprised me a little.

Thank you for the clarification on twitching. I have always thought that was the case, but am surprised to see how many locations its called out. I know a lot of nervous people must read about it on sites like the Mayo, and figure the wheels are coming off.

A final aside, I have read a couple of people comment whether or not Wright is a first or last name. After seeing your location, I was speculating that your choice of handle has more to do with the Rowdy Raider than anything your mother named you. Just curiosity, it's not like we have an informal betting pool on the forum or anything :mrgreen:

I think we all benefit from your knowledge and experience. Thank you again for taking the time to respond.

Robert
 

Al

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Kind of like trying to unmask Batman if you've seen the new movie.

AL.
 

Sammantha

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Hi planning guy! I too have a sort of matrix going on.. I think i have myotonic muscular dystrophy with brisk reflexes and clonus due to anxiety. I keep coming up with all these alternative diagnosis but all the symptoms dont fit. In myotonic muscular dystrophy you dont have UMN involvement... So maybe anxiety is causing this, hmmmm. I dont know what to think all i know is that i have no diagnosis, my neurologist doesn't think ALS but wants to see me on a regular basis because "there is something going on." I think i might know what you are talking about with the vibration feeling. When i stretch i can feel vibrations throughout my muscles but that is the only time. Except the occassional "shake"... A muscle will just shake suddenly then stop. I have twitches everyday, but they start out like big pulses and now look like facics. Hope you find answers.
 

Sammantha

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I forgot to write about clonus. I never have it that i notice, but when the neurologist jerks my foot my ankle keeps moving. Only on my left side.
 

planningguy

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Kind of like trying to unmask Batman if you've seen the new movie.

AL.
And I thought why I got a shock was because I spilled Coke on the keyboard :)
 
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planningguy

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Just a quick post. I promised ballet pictures, and uploaded the best one to the album in my profile. She loves to practice in the living room, and will go up on her toes from time to time. Everyone once in a while she'll ask daddy to pick her up so she can practice her "leaping."

The funniest thing... ballet was a concession for her. She really wanted to do tae kwon do with her brothers, but wasn't old enough :)

Robert
 
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trying to stay positive

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Oh my goodness, she is ADORABLE! You have absolutely beautiful children! My daughter took ballet for a short time when she was three years old, but I had to pull her out because she always wanted "the pink crown" and would throw a fit if it wasn't her turn to wear it!:oops:
 

brendapals

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Robert-
Yes, your daughter is adorable! I was never blessed with daughters, but as soon as I can get my teenagers to put the pictures on here, I will have new pictures of our 7 yr old "trying to fly"= we had wind gusts today of over 50mph, they took an old bed sheet and tried to "catch" wind with it and fly!
Thanks so much for sharing the picture,
Keep the faith,
brenda
 

awieleba

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soooo adorable! Kids are soo precious, and we enjoy every minute with them.
 

planningguy

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OK, I'm almost finished with the symptoms portion of the matrix and had a quick question:

The knuckles on my both hands have "sunken." Its pretty pronounced on my right hand, especially the knuckles of my ring and pinky finger. I have searched in vain for a reason, but "sunken knuckles" in google only brings up boxing anecdotes or completely unrelated medical information (I am not a pugilist, by the way... so much for the easy explaination :) ). At first I thought it might be related to atrophy, but my grip strength isn't that bad. My hands just get sore and cramped from time to time (particularly the right one). Any ideas?

Thanks in advance,

Robert
 

planningguy

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Thanks for the compliments. My kids are angels, and fatherhood was one of the most pleasant surprises of my life.

Robert
 

awieleba

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what do you mean by sunken? My hands have a baggy look at my joints or knuckles. Almost like I have extra skin. Maybe from muscle loss? I have lost muscle there. I have one pinkey that the knuckle pops up a little, but comparing to the other is hard, I broke the other pinkey 2 yrs ago playing tennis, so it is hard to tell. ONe thing I noticed with my fingers (while were on the subject), I noticed that my index fingers at the top knuckle seems to be turning in, just a little on both hands. It is notable. From the middle knuckle up it is thinner and curves inward. It seems to be the same on both pointers. (maybe I wont be able to point the finger at anyone soon!) It is new, because when all this started I thought I had RA because of the joint pain.....who knows, just wanted to share my finger story, who else would care?
 

fmarino

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I know I have seen Wright say that we don't have muscles in our fingers and that our fingers move via the hand muscles and forearm muscles.

Isn't that what Rheumatoid Arthritis looks like and isn't RA autoimmune?
 
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