Suddenly new - Brisk knee reflexes??? Neuro visit

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Suddenly new - Brisk knee reflexes??? Neuro visit

Postby Scaredlin on March 10th, 2014, 6:36 pm

Hi! Today was my fourth neuro visit and the FIRST time I have been told I have brisk reflexes or noticed them. They were VERY BRISK looking. He said 3t+ symmetrical knees 2+ symmetrical upper. He was a little surprised by them as was I and he tested them three times. I was a little nervous but I have been nervous during all of my neuro exams, so I am worried that its progressing!

Again, Ive only been at the twitching thing for a little over 2 months. This neuro was a neuromuscular specialist at a major University which Im glad I saw. For those following my incessant posts (sorry!) I am the "burner." I have burning pain all over my neck and traps and sometimes all over- patches on my hips, my head, my thighs, butt, my lips. My arms feel permanently with lactic acid in them. Most thumpers in upper arms but I do twitch all over to a lesser degree. I have terrible occipital head/neck spasms, and these pretty much started out of the blue a few months ago as well and i spend most of my time in pain even though I have been doing yoga, going to chiropractors, physical therapists. Have toe/foot cramps as well.

He did say some reassuring things to me. First he said "I don't know why everyone associates twitching with ALS, Its not related, usually anxiety produced." Second, he said to me that based on my exam he thought I had as much of a chance of having ALS as he did. He said of all the thousands of patients he sees mostly serious, he said I was in the "minor concern" category (he did it with a visual of his arm high to low so I guess thats good:))). He said ALS does not present with burning (although why do I sometimes see that ALS has sensory symptoms??). Anyway, he said he is going to test me for small fiber neuropathy and autonomic. He said after we do the test he will give me something for the pain which I am desparate for. Klonopin does zero for me except put me to sleep. He saw my clean EMG but said he wanted to repeat it more extensively (that got me worried). He said he was not looking for ALS but for cervical radiculopathy and MM neuropathy whatever that is.

So Im off to Disney to try and enjoy some time with my family but feel worried by the "new" briskness in my legs. I am also of course worried that the neck and shoulder pain are somehow ALS related even though all the PT's and chiros said I am full of knots not weakness - I can still lift weights no problems, I just pay for it 2 hours later with the burning and pain. Anyone else with after workout intense muscle soreness after use? I guess Im putting myself in to the "rare" category of presentation (not distal, but neck). Ive just never been a chronic pain case before, and you would think a few good weeks of stretching and therapy would do the trick but this neck and shoulder pain are NOT going away, and them coinciding with the twitching and muscle cramps and spasms still has me very worried!!

I am so sad inside. I really wanted to enjoy this trip with peace of mind and without this immense terrible pain. I guess I have it from 4 neuros, the irrational side of me is conjuring the possibility of "WHAT IF." He did say to me "if I thought you had ALS you would not be going on vacation, I would be testing you right now."

anyone else with neck/shoulder issues, chronic back of the neck pain or brisk reflexes? My CPK is supposed to come back tomorrow and god forbid its high I will lose my mind. I almost don't want to know before the trip.

I need some words of encouragement guys.

THanks
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Re: Suddenly new - Brisk knee reflexes??? Neuro visit

Postby Debd4l on March 10th, 2014, 8:58 pm

Seems like a lot of us here have brisk reflexes. I had them at my exam only in the legs but they were symmetrical like yours. If they are symmetrical it is supposed to be of less concern. I would say yours are most likely due to anxiety if you have seen 4 neuros in two months! I have been twitching for almost 14 months now and have only seen the neuro once. If your neuro said he was not that concerned and that you could do tests after your vacation that is good. When they mention some people with ALS have sensory issues that is true BUT they also have clinical weakness etc. Sensory without clinical weakness is not pointing to ALS in your neuros mind it sounds like. If he wants to test you for other things that is good it means he is being thorough. I am betting your cpk will come back normal just as mine has twice. Have a great time at Disney. We went last year and that is when I started having my symptoms, looking back I did not enjoy it as much as I should have because I was twitching etc. I should have enjoyed it to the fullest, I was with my family at Disney and I am still here so worried for nothing!!
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Re: Suddenly new - Brisk knee reflexes??? Neuro visit

Postby Scaredlin on March 11th, 2014, 8:58 am

Thank you for replying! If I weren't in so much pain I wouldn't be worried. I guess I should be happy that it's pain and not weakness! I am going to try my best. I just keep telling myself it's "developing" and waiting weakenss to develop. I guess that's the dues you pay for being so early in. I hate to wish time away but I would do anything to be 14 months in.... Are you just twitching or other symptoms?
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Re: Suddenly new - Brisk knee reflexes??? Neuro visit

Postby Xina535 on March 11th, 2014, 11:12 am

I am not sure about the brisk reflexes. I had my reflexes tested in Nov and they were normal.

BUT, I do have pain (no clinical weakness, but definitely perceived weakness), and I have this constant worry that 'it's developing' and I am hanging on to anything I can and wait for time to go by. I can definitely sympathize with you there. I have been twiching for more than 8 months now and also wish I was at 14 months, still without weakness.

Other symptoms: Pain and stiffness in my left thigh for a few months now, and soreness and tightness in my arms, neck and shoulders starting to develop. I am worried about these changes, just like you, and am happy to take the pain over weakness. I have an orthopedic appt and will get my first EMG on 19-Mar, so I better get some real answers then. I try to keep telling myself that it makes sense that my muscles are tense, because I am a freaking wreck! The chances my muscle tension and twitching having to do with anxiety and stress vs. due to *** are a (insert absurd high amount here) to 1. And I think this could apply to you as well.

You have very positive things going for you that I want to point out to you:

No clinical weakness
You have a clean EMG now. He wants to monitor your EMG because EMGs can show other things. Makes perfect sense. It also makes perfect sense if you have burning and he wants to look for radiculopathy. Your chances of having something like that over *** is off the charts.
Your reflexes are symmetrical.
The things your doctor said - he can't just tell you stuff you want to hear, he is held accountable to these things. He said he thinks your chances are the same as his own, that's big time. He said that about your vacation.

I think you should keep those positive things in your mind. When a 'what if' comes on, then try to replace it with something positive that you have going for you. That is my method right now.

"Oh man, my arms seem weak and sore, hard to shampoo my hair' is replaced with "Yea, I had this before a few days or weeks ago, and it went away, so now it's back, and well, that will not happen with *** so I'm all good."

Maybe some of this helps you?
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Re: Suddenly new - Brisk knee reflexes??? Neuro visit

Postby Debd4l on March 12th, 2014, 4:08 am

Yes, I had and have other symptoms..When this first started over a year ago I was sick and had a lot of perceived weakness in addition to my all over twitching. I also had pain. My diagnosis after my testing was not BFS it was CFS/ME (fibromyalgia). Anyway, most of that has gone away now that I am gluten free. But the twitching remains. Sometimes it is barely noticeable other times it is more obvious. In any case, yes it has been 14 months. I was like you and sort of wishing for time to pass so I could feel better about it, I even promised myself that if by one year I was better and not any worse I would stop worrying about it, but that is sometimes easier said then done. Weakness does not really seem to slowly develop in a MND. It in most cases, it just appears without much proceeding symptoms in many cases. For example, someone wakes up with foot drop. I would not wait for it to appear. You have been to several doctors who have assured you it is not MND correct? Try and enjoy your life and that 12 months will go by quicker than you think. I bet this time next year you are still okay. Hugs.
Scaredlin wrote:Thank you for replying! If I weren't in so much pain I wouldn't be worried. I guess I should be happy that it's pain and not weakness! I am going to try my best. I just keep telling myself it's "developing" and waiting weakenss to develop. I guess that's the dues you pay for being so early in. I hate to wish time away but I would do anything to be 14 months in.... Are you just twitching or other symptoms?
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Re: Suddenly new - Brisk knee reflexes??? Neuro visit

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