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Amyotrophic Lateral Sclerosis (ALS) Message Board
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Old 07-27-2012, 08:17 AM   #1
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Amfamfamf HB User
Frustrated

Hello. This is the third message I have posted in the last few months. I have not gotten one reply. I see people who ask ridiculous things on here that get replies all the time. This is my last ditch effort at getting some help. If you could please please help me I would really appreciate it.

As a recap of what I've said before... In march after a series of upper respiratory infections I had numbness that ran from my knees to bottom of feet ...mainly in the right leg.. It persisted a few weeks and then left. In the mean time I started have muscle fasics everywhere. My muscles will also jerk at times. I have a buzzing feeling that comes and goes in my knees very occasionally. And very occasionally foot cramps. I had an MRI with and without contrast..vitamin b level, thyroid etc, vitamin d.. The whole work up. Everything was normal except my vitamin d was 27.. Its not at 45 after taking prescription vitamin d. I waited 2.5 months.. got into a neuro from Wash U at Barnes Hospital in St. Louis. She did a lymes panel, creatine kinase level, and an emg and nerve condution study. She noticed brisk reflexes stating that many people have them. she also noticed that I had some muscle wasting although I do not have any strength loss. The EMG was totally clean except for a few simple fasiculations. When the nurse called with the results she said the dr. now thinks its most likely benign fasics.. Fast forward almost 2 months and I am now having the corners of my mouth jerk very quickly (almost like a tremor) when I begin a slow smile. When I open my mouth and hold it open my bottom lip pulls to the left side and hangs/droops down and shakes. I also feel like I am lisping my s's off and on. I have also been biting the inside of my mouth. I am so scared. I called my neuro to see if I need to come in sooner. she is supposed to call me today. Does this sound like bulbar palsy...or psuedobulbar palsy..or anything als related. I couldn't find anything on bfs about the lisping and lip drooping. It truly looks like my mouth is derfomed when it happens. I am not necessarily thinking this is ALS (obviously its my biggest fear)...but I am just wondering what all it could be! PLEASE PLEASE PLEASE help me. I have so much fear from this.

 
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Old 08-13-2012, 05:15 PM   #2
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Re: Frustrated

Ask your MD about Bell's Palsy.

Quote:
Originally Posted by Amfamfamf View Post
Hello. This is the third message I have posted in the last few months. I have not gotten one reply. I see people who ask ridiculous things on here that get replies all the time. This is my last ditch effort at getting some help. If you could please please help me I would really appreciate it.

As a recap of what I've said before... In march after a series of upper respiratory infections I had numbness that ran from my knees to bottom of feet ...mainly in the right leg.. It persisted a few weeks and then left. In the mean time I started have muscle fasics everywhere. My muscles will also jerk at times. I have a buzzing feeling that comes and goes in my knees very occasionally. And very occasionally foot cramps. I had an MRI with and without contrast..vitamin b level, thyroid etc, vitamin d.. The whole work up. Everything was normal except my vitamin d was 27.. Its not at 45 after taking prescription vitamin d. I waited 2.5 months.. got into a neuro from Wash U at Barnes Hospital in St. Louis. She did a lymes panel, creatine kinase level, and an emg and nerve condution study. She noticed brisk reflexes stating that many people have them. she also noticed that I had some muscle wasting although I do not have any strength loss. The EMG was totally clean except for a few simple fasiculations. When the nurse called with the results she said the dr. now thinks its most likely benign fasics.. Fast forward almost 2 months and I am now having the corners of my mouth jerk very quickly (almost like a tremor) when I begin a slow smile. When I open my mouth and hold it open my bottom lip pulls to the left side and hangs/droops down and shakes. I also feel like I am lisping my s's off and on. I have also been biting the inside of my mouth. I am so scared. I called my neuro to see if I need to come in sooner. she is supposed to call me today. Does this sound like bulbar palsy...or psuedobulbar palsy..or anything als related. I couldn't find anything on bfs about the lisping and lip drooping. It truly looks like my mouth is derfomed when it happens. I am not necessarily thinking this is ALS (obviously its my biggest fear)...but I am just wondering what all it could be! PLEASE PLEASE PLEASE help me. I have so much fear from this.

 
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Old 08-13-2012, 07:13 PM   #3
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Re: Frustrated

My neuro says absolutely not bells palsy. I am now seeing a neuromuscular disease specialist, have since had a clean emg of my tongue and lip. I am awaiting more test results...still no answers.

 
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Old 10-04-2012, 08:06 PM   #4
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Re: Frustrated

Hi.. I noticed you have not posted in a while.... I hope this is good news and not from a lack of response... how did your last neuro appointment go? I also thought Bells Palsy.

 
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Old 10-04-2012, 08:25 PM   #5
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Re: Frustrated

Hi. I was referred to a neuro muscle disease neurologist. I had emg of 7 or 8 sites and also the tongue and lip. Simple fasics were seen in some limbs. I had multiple blood tests including paraneoplastic antibody panel. It was clean. My dr thinks my mouth pulling to the side could be dystonia. I am now being referred to a mOvement disorders neuro to confirm if a cranial dystonia. The neurologist found i have a small spike in a monoclOnal protein. I am now going to see a hematologist because of this...most likely is mgus.

 
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Old 10-04-2012, 08:40 PM   #6
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Jenny1267 HB UserJenny1267 HB UserJenny1267 HB User
Re: Frustrated

I am glad you are on a track to finding some answers.. some help. Although it is upsetting when you find out something is wrong.. from what I understand if it is mgus then there are treatment options. Please let us know how it goes.. and I am sorry that you had to go through so much to get to this point. Please know we are pulling for you and everything positive we are sending to you.

 
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