Old 03-05-2009, 12:05 PM #1 (permalink)
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Default Update after neuro visit

Hi everyone!

First off, I wanted to say thank you to all those who have continually offered support for me throughout these last 7 months. It has been a long 7 months, and I can sympathize with so many of you.

I started having body wide twitching last August. It literally came up over night and lasted for quite awhile. Slowly, it eventually started to subside a little. I remember freaking out because all of the textbooks and internet sites said it pointed away from benign twitching when the muscle twitched when exerted. That was my first fear. My muscles twitched whether I was using them or not. My left leg was my biggest problem. It twitched everywhere all the time, and I hated that. So, one day I got out a measuring tape and measured my leg searching for atrophy. And lo and behold, my left leg was 10mm smaller than my right leg. I flipped out and immediately booked my first neuro visit. He thought that I was fine, told me that 25 was awfully young to be diagnosed with ALS, but told me that he would do an EMG for me. He saw me twice and did 2 EMGs. One of the right side, and then one of the left.

I was fine for awhile, but then I noticed that after eating I had more phlegm than normal. I would cough more, wake up in the night short of breath, and felt like I was even having a hard time swallowing. I went to an ENT who told me that I had acid reflux. I mentioned ALS to him and he looked at me like I was crazy. At this point, I had become crazy. I even started biting my tongue in my sleep, which is also freaked me out.

One day, I was rolling my tongue around and realized that the left side of my tongue was shaped much differently than the right. It almost looked like there had been a chunk taken out of it. I FREAKED OUT! At this point, I made an appt with an ALS specialist at Cedars Sinai. She saw my tongue and told me that while it was abnormal, it didn't look like the typical atrophy that she normally saw. She also tested my reflexes, which were all hyper by the way. She said that the only time a doctor is ever concerned with hyperreflexia is when it is asymmetrical. All of my limbs were hyper, so she considered that to be normal. She then wanted me to come back in 6 weeks for an EMG and a tongue EMG to rule everything out. I went back and she did my right side, as well as my tongue. Everything was normal.

I was fine for awhile, but then I realized that my dominant side hand muscles were smaller than my non dominant side and the muscle bulk looked quite different. I also tripped 3 times in one day on a flat surface. That was enough to send me right back in to see the specialist at Cedars Sinai. She did some strength tests. I told her that I felt wobbly when I stood on my left leg compared to how I felt when I stood on my right. She said that was because I was right handed. I also showed her that my left outer ankle has been twitching non stop 24 hours a day. What scared me the most was that I can only see it in certain lights and I can't feel it. Of course, with my hours of googling, I was convinced that meant this twitching was not benign. To make matters worse, I rarely ever get widespread twitching anymore. The specialist did 45 minutes worth of strength tests on me. I showed her that my tendon was more prominent in my left foot, and that it hadn't always been that way, and I expected her to say it was atrophy. Instead she said, "Lift up your toes. If you can do that, then your asymmetrical foot isn't atrophy." I then asked her if she thought I needed an EMG of my left side of the body, since my left ankle hadn't stopped twitching. She said no but told me that if I wanted to wait until the end of her day, that she would fit me in.

She tested I believe 15 muscles all on my left side, including two that were actually in the palm of my hand. Those are quite painful muscles to be tested. The tech who was doing the testing thought she saw one fib when she tested the muscle in my ankle that had been twitching so much. The ALS specialist told her that it came up way too quickly on the monitor to even be considered a fib.

When the test was over, Dr. Abi once again told me that I didn't have ALS. I asked her to promise me that I had no fibs in any muscles. She stated that the tech thought she saw one, but that it wasn't one. She then went on to explain that she did not do my EMG for her benefit, but rather for mine. She then went further on to explain that even if I had a fib that she found to be insignificant and I asked her if there were any, by law she would have to tell me. She said that as a specialist, she can not keep from disclosing ANY information from me, no matter how insignificant the info may be. I then asked her when she wanted to see me for a follow up and she said that I didn't need one, but that she wanted me to call her in 6 months just to let her know how I was doing.

I wrote this hoping that it helps someone out there somewhere. The biggest thing I can say is please believe your neuros. I don't know why all of these odd things happened to me, and to tell you the truth...are still happening to me. While I am writing this, I have been twitching non stop in that same flippin place on my left ankle. I can't feel it, but I know it hasn't quit. But I have to stop caring. I am going to take one day at a time on working to improve my life again. Life is way too short to worry about a disease that you haven't been diagnosed with. If you have twitching without weakness, then that points away from ALS. Not one doctor has told me otherwise. Please don't go out and do strength tests because then you will be weak, which will then send you back to the neuro because at that point you will have perceived weakness. I did this and my legs started giving out on me. That was 7 months ago, and today I can still run.

My heart goes out to everyone on this forum who actually has been diagnosed with ALS. Every single one of you and strong and courageous people and I hope that one day, there will be a cure.

I wrote this update first off for Wright, and then for myself. It is something I had to do along the way in my process of moving on. I am far from being over my anxiety, but I can't fixate on this any longer. I hope that if you are reading this and do have health anxiety, that you believe your first neuro and then you start looking for a way to treat your anxiety, rather than your twitching. By the way, don't try to analyze twitching. Some people with ALS have worm like twitching, others have thumpers, and others have twitching that they do not feel. If your neuro says your twitching is benign, do your absolute best to believe that.

I hope in the end, this thread was able to help someone that was going through a tough time. I wish you all the best.

Kristin
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Old 03-05-2009, 12:36 PM #2 (permalink)
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Great post Kristin. Many of us have been there too. Best wishes for moving on.
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Old 03-05-2009, 01:12 PM #3 (permalink)
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Thanks Kristin. We need a few more posts like yours. Good luck.

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Old 03-05-2009, 03:48 PM #4 (permalink)
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Bravo, Kristin. May you finally find peace of mind. Enjoy your family, your friends and your life. Take care.
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Old 03-05-2009, 04:59 PM #5 (permalink)
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Good luck Kristin, I am glad you have some peace with this. I am in the same place, and I get non stop twiching in my outer ankle as well. I showed my doc my 'atrophy' and he said there is not muscle's there, just tendons. He saw the twitching and emg'd and it was fine. I am in the same boat, I dont know why it is doing that and I dont care anymore..............

take care!
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