Old 08-31-2013, 09:15 AM #1 (permalink)
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Hi everyone my symptoms started just over a year ago now and I've been to two neurologists but they are still baffled as to what I have.my symptoms began as feeling really really fatigued which was unusual and nausea,I went to doctor and he said it was ok I continued to feel worse then I noticed my face was beginning to droop both sides which progressively got worse along with atrophy in temples,eyelid droop,flaccid musckes face and body along with a lot of twitching when muscles are in use.i get twitching all over and people notice my facial twitching a lot,I have also lost muscle tone in arms and legs constantly pins and needles in hands and feet.they have tested me for ms,had lyme test,thyroid,lumbar punch,MRI of head and emg(which went for a short 10 minutes,also ck levels checked and checked for mg also all tests normal so they are baffled to figure out what this is and are watching progression and will re do tests later.have any of you had normal results to begin with and been diagnosed with als later?and do my symptoms sound like als? Your replies would be great as I am a mother with four children and I'm 33 I'm getting sicker all the time and the muscle loss is scary my face is a lot different then 12 months ago 😔I also suffer from muscle jerks especially at rest and my tremors are bad.i also get very itchy and a rash on on my upper chest.i get constant leg twitches now and my neck hurts.i have an appointment coming up with neuromuscular specialist my doc think lower motor neurone as my forehead hasn't been spared it has wasted too.im really frightened and its so hard watching my body health and face change and get disfigured.i feel like giving up for answers as its only pointing to als can someone please tell me if this is familiar and if any of you with bullbar onset had same facial changes flaccid muscle,sunken temples,loss of muscle tone,droopy eyelids,fallen neck muscle under chin.anyone with als diagnosis please help and tell me if this sounds like you
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Old 08-31-2013, 09:31 AM #2 (permalink)
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Default Re: Info

I don't want to sound harsh but you need to stick to one thread. Multiple threads makes it hard for some people here who have trouble typing to keep up with your story.

You should also break up your paragraph. When it is one long paragraph it is very tiring and hard for some to read.

You should also be posting under the thread "Do I have ALS Is this ALS" .
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Old 08-31-2013, 05:37 PM #3 (permalink)
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Just looking for answers as I'm a mother with 4 beautiful children,they have already suffered the loss if our son I really can't have them lose me too and I'm desperately hoping this isn't als as I watching mum get sicker and disfigured over past year has been extremely hard.i wake up crying everyday as I get worse and everything is pointing to als I've never been so terrified.the last couple if weeks my shoulder and arm pain on left side is so bad whatever this is its cruel.i wish someone on here can tell me if the facial side of things is what als experience is as that's where mine started.us this bullbar onset
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Old 08-31-2013, 05:38 PM #4 (permalink)
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Sorry they are watching mummy get sicker
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Old 08-31-2013, 05:38 PM #5 (permalink)
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No one seems to reply that's why I've done multiple threads
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Old 08-31-2013, 05:40 PM #6 (permalink)
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I understand. I'm the mom of a 5 year old girl w disabilities. I can't imagine not bring here for a young child who needs me desperately, to care and advocate for her well beyond 18. It's terrifying.

I would recommend medication to deal w the anxiety. Wait for your appt but in the meantime ask your gp for something to deal with the terror.
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