Old 11-23-2016, 10:18 AM #1 (permalink)
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Default Looking for some info about my sisters symptoms

Hi, this is my first time on here. I had a friend pass from ALS seven years ago and now my sisters neurologist suspects she has it.. we are losing our minds with worry.. she can't get to the specialist until Jan 18 at northwestern university.. she is losing her mind with worry.. she has fascinations in her legs and arms, she had weakness in her left arm and over the last three weeks it's moved to both legs and both arms and she's feeling it in her butt now. She says her legs and arms feel a little numb and it feels like bees are buzzing all over her foot.. she's very active and fit.. is it normal for the weakness to move so quickly from one arm to all the limbs. She does have normal sensation in the feet. They did MRIs and ruled out MS. She originally went to the ER and saw a neurologist there.. he is the one that referred her to northwestern. I appreciate any information or thoughts.. this is so scarey to us.. she is my twin sister and 53 years old.. thanks so much and happy thanksgiving to everyone.
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Old 11-23-2016, 10:48 AM #2 (permalink)
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Default Re: Looking for some info about my sisters symptoms

Hi
There are many tests that need to be done still.
3 weeks from onset to all limbs is extremely fast. This is clinical weakness confirmed by a doctor?

Buzzing is described here often but by people who do not have ALS.

2 months for an ALS clinic is unfortunately not that unusual especially as there are the holidays to deal with.

Has she seen her pcp? I would encourage her to do so if not. She needs her pcp to assess the situation and possibly do some testing during the wait period. The pcp can also be an advocate if things continue to progress. If the neuro was someone she saw in the ED is it now an ongoing relationship?
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Old 11-23-2016, 12:14 PM #3 (permalink)
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Default Re: Looking for some info about my sisters symptoms

I agree with Nikki. I have heard of some rapid onsets - such as my friend's husband who woke up one day and could not raise his arms above his waist - but never such rapid progression of weakness. Buzzing and tingling is also not an ALS symptom, particularly so early on. There are a lot more conditions to be ruled out here other than MS. I know the wait is torture, but yes it is standard. WE were originally given a two month time frame to go to the ALS Certified clinic but got in early due to a cancellation. You can ask to be called if they turn out to have an earlier appointment, and yes do see your regular MD too.
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Old 11-23-2016, 02:34 PM #4 (permalink)
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Default Re: Looking for some info about my sisters symptoms

Hi, Lora, with what you describe, a viral or bacterial condition seems more likely than ALS. I agree that an internist, who can do blood work, for example, would be a good next step.

Best,
Laurie
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Old 11-23-2016, 05:32 PM #5 (permalink)
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Default Re: Looking for some info about my sisters symptoms

Thanks everyone for your responses.. she did see her PCP and she instructed her to go to the er so she could see a neurologist immediately.. they also ruled out Gillan barre. Thankful her PCP is awesome and pushed the neurologist to get the appt with the specialist.. she was in Costa Rica in January on a mission type trip with the veterinary school. They were spaying/neutering animals in remote locations.. she got sick while there and was still not 100% after four months. She had some weird almost bells palsy type stuff.. eye issues and drooling.. they never figured it out. She didn't tell the neurologist this as it didn't occur to her that it was relevant. She contacted her PCP today and she is going to do some additional testing for other things while waiting for the specialist appt.. she is also at the top of the waiting list.. she called herself and arranged it.. I pray it's a weird viral thing.. thanks again for the support..
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