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mommyof2boys

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Jan 24, 2017
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Lost a loved one
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US
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GA
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Columbus
I want to preface this post by saying I have already sceduled an appointment with my doctor in two weeks. I would also like to say that it's incredible and inspiring to read the stories of those afflicted with the disease, and to see that some who are fighting it would lend their time to answer the questions of complete strangers about the very illness they or their loved one has/had is heartwarming. Thank you all for even just reading my post.

My grandmother had this illness and passed before I was ever born. I didn't witness the deterioration but I did witness my mother break down and cry several times over a decade after her mother's passing. I have seen the devastation it causes in that respect.

I unfortunately have had reason to believe that I may possibly have als too, or something similar. Back in October 2016 I sat down on my couch after a shower and felt my legs tingle and twitch all over. It was not visible but was very odd. I even called my mom about it immediately and was pacing and scared after a quick Google search linked that symptom to als. She told me not to worry it was probably because I needed to be more active. With all that was on my plate at the time, I tried to ignore it.

The holidays helped me through it because I ignored it pretty well until right after new years. I became so frightened by the non stop twitching in both legs and my Google searches that I almost had a panic attack and stayed up a full night doing balance and strength tests. I made an appointment that day to go to a doctor but when I showed up my insurance was inactive. So I had to wait.

In the meantime the twitching has never stopped. I barely sleep. I am on this forum for a reason. I looked for answers. I found out that jaw spasms can be an early sign. Back in October I had that in my right side of my jaw and was so worried I had tetanus that I made a trip to the er and got antibiotics and a booster shot. Over the years I have always had a great fear of disease, my family friends and fiance all dismiss my claims now because of all the disorders I was SURE I had but didn't. I am the girl who cried wolf and I am hoping and praying that is the case right now.

Over the past week I have noticed a slight heavy feeling in my legs and felt weakness in my right arm that has since subsided. I was diagnosed with carpal tunnel syndrome at age 15 in my left hand (after a week long obsession with having ms and not getting sleep) and have always had tingling in that hand though I always knew the cause. It had began to do some pretty extreme twitching in all fingers but I dismissed it for ct symptoms. My right hand has begun to periodically do it as well which is why the weak feeling scared me.

It seems as if yesterday and today my legs feel tired quicker and when bending them slowly they quiver. My fiance, frustrated with me, had me push his arms up and down with my legs to test the strength and said they were very strong (he is not a doctor clearly).

I am posting to not only hear from others but to post progress and if someone else comes across this post with the same symptoms, maybe this will help especially once it is resolved. I have no appetite anymore and have become completely consumed by this fear so any advice will be helpful. The whole experience gives me so much respect for those afflicted. Thanks for your time!
 
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The best advice I can give is to stay off this forum and Google until you meet with your doctor. You are not describing ALS and you admit you have fear of disease, aka anxiety. Have you received any help for that issue in the meantime?
 
Unfortunately no. I am trying to do calming/meditative breathing and exercises just to calm myself to see if the symptoms go away. The twitching doesn't stop, then again I am fully aware of why I am doing the exercises and completely dwelling on the twitches and perceived weakness so I don't know if it just isn't working or it isn't going away. I am on edge constantly. I just had a blood pressure attack actually (face/head on fire, dizzy) because I do not sleep and barely eat. I don't know if the weakness I feel in my legs is from not getting sleep, or from doing so many exercises to test strength. I am almost tempted to go to a walk in clinic for perhaps a referral to a neurologist or SOME peace of mind until my scheduled appointment on Feb 10th. I don't think I can survive that long with this much fear.
Thank you for your response!
 
I don't know if this is ok but I wanted to add a few new symptoms and ask a question.

New symptom-- was laying in bed, almost asleep, felt like my esophagus sort of collapsed and quickly sprang back. I have a sore throat and have had it a few days following a cold. Possible bulbar?

And both shoulders sort of jolted as well today, and left one had a strong twitch.
How can I differentiate between weakness in my legs and just fear related cramping? This is stumping me and really consuming me. My legs feel weird and first hard to balance on my left leg, but not impossible.

Performed babinski on myself by following a video online. It appeared negative (i realize it won't be completely accurate with myself doing the rest but I watched a video where people were doing it themselves under doctor's supervision and those with confirmed spinal issues had positive results despite performing them themselves.) How important is the babinksi test result? I have read it is only variably positive in ALS diagnoses.

Also how can I get the twitching in legs to taper off? Very hard to go to sleep with them twitching away. Main reason I really don't sleep anymore.

When I do see my doctor would it be wise to mention my suspicion of ALS or just present my symptoms?
 
The latter. When he presents next steps and his analysis, you can mention your fear if you feel moved to do so. I think you know it [the fear] has little to no basis.
 
Thank you! I will remember that. I am trying to tell myself it has no basis, but at this point I have already pretty much diagnosed myself mentally. I am still going to try to live normally and ignore it though, I'm not a doctor. But ultimately peace of mind for me will probably have to be provided by the doctors. Thank you for responding!
 
More symptoms I noticed today. Not necessarily looking for response at this point just tacking it onto my thread and will continue to add to it till I go to the doctor.

Just feeling weird in my throat. Probably because I READ about the symptoms so not too worried about it.

Involuntary swallowing happening a lot. I have always done this when distressed, usually while talking never at rest as is happening now.

When I applied pressure to the gas pedal this morning and afternoon my foot and ankle spasmed for lack of better word. It twisted back and forth. Doesn't do it every single time but more often than not.

RELENTLESS fascilutation. It depends a lot on how I am sitting. Laying down with knees at 90 degrees it doesn't happen much. Walking I can't feel it at all really. But when walking up and down a step my legs shake.

Fasculitations in abdomen back and shoulders, and one on my scalp and face.

Opened my mouth to examine my tongue and upper lip shot up involuntarily 3 or 4 times. Lips twitch occassionally.

Sorry for posting again just terrified!
 
Okay one more question. Would als progress from just twitching in legs for 3 months to all of a sudden twitching in the neck and face and arms and back within a 3 week time frame? Is that normal?
 
No, you are still not describing ALS symptoms, not at all. You really need to not post on this forum until after you have been seen by your doc. This is not helping and is only fueling your fear and anxiety. Focus on treating your anxiety, exercise, and gentle stretches and try to not focus on this until your appointment.

Tracy
 
Thank you I am trying and failing horribly at not focusing on it. I am wracked with guilt that I am neglecting my fiance and sons because if I do have it (hopefully not) I would hate myself for wasting healthy time by not playing with them or paying attention to them. I do not sleep anymore or eat and it is devastating me to wait. I will try. Thank you guys
 
You need to contact you PCP to deal with your anxiety until your appointment on Feb 10. You absolutely need to get a handle on that first. You should not wait till your neuro appt to ease your mind. If you have that much anxiety and fear you need to follow-up with your primary care doc today.
Best wishes.
Tracy
 
Thank you. I have never seen a therapist or anything but i definitely need to. I will try to make an appointment tomorrow. I have a feeling i'll have to wait for that appointment too though.

Another question-- Can you have the Bulbar tongue symptom and not have the disease. I swear I have it. My fiance thinks so too and he's thought i was crazy till now.
 
Stop now. Find a therapist and wait till you have your neuro appt before posting again.
 
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