My mind goes to ALS..... First Post ... Long

[redsoxygirl89]

A little back story I've always had anxiety, from a young age. When I was 4 i had open heart surgery, and one time was given to age of 8 to live. I spent time from ages 4-8 out of hospitals and surgeries, and developed a huge fear of dying then. fast forward I became healthy! i had a on/off murmur and scar down my chest but thats all thats left of a heart issue.

In 2012 (I was 23) I witness the death of my husband. He went into cardiac arrest following a blood clot. We were at home when he just fell to the ground, the emts did cpr all way to the hospital... about 30mins later doctor walked in and said he did all he could but they lost him. (I went from a wife, to a widow and single mother of a 1 year old)

Fast forward 4 years: I remarried and was expecting my 2nd child, a couple weeks after finding out she was girl, my dad was diagnosed with stage 4 colon cancer (this was April), they first told us he had 2.5 years, and i started to accepted it. By 2 week of June dad was in the hospital clinging to life. He passed away June 15. On june 17 i was admitted for serve Pre-E and ended up having our Daughter at 32 weeks. She remained in NICU for 16 days. But is healthy now....

Since dad's cancer & death. my General Anxiety has turn into more of medical anxiety. I had mult ER trips following his death fearing i Had brain tumor, colon/stomach cancer, and the list goes on.. i finally got it to ease up some over the years.

In Oct 2018, I experienced my first ever full panic attack. (I had sweating, chills, fast heart rate, sick to my stomach, unable to breath and so on) I worked at a hospital at the time and was sent to ER i had another head CT, Echo, EKG all was normal. things seemed to ease up.

In Feb of this year (19') I started having bad cases of verto (feared it was brain tumor thanks to google) it faded after CT scan and would slightly flare up if i had bad ear infection. (this was during the time we were fixing up our house to sell)

All was good till, about a month ago. I started with having a stomach bug (diarrhea throughout the day) a couple days later I noticed my leg twitching pretty bad, and first i brushed it off than turned to google. and found the first thing that came up ALS. the more i read the more i freaked out. My twitching is everywhere it came be left leg, right leg, arm, butt, foot, lip, eye, fingers, shoulder etc.. (which maybe seems to be unlike ALS) I dont seem to notice it much when im busy. I notice it most when im relaxing on couch or at work (I have a office job at a doctor office) Right now im sitting at desk typing and felt in my lower leg and my upper arm. I don't have any weakness (i have questioned if my fingers are weaker, but i think thats more mental) but I cant shake ALS

The doctor I worked for prescribed me 5 than 10mg of buspar ( i am 2 weeks in) and the twitches might have slowed some I dont notice a big difference, im still twitching, and though i try i keep going back to google. I don't notice any muscle weakness. I do notice hypertensive to things that touch my skin, and i notice my skin and lips feels "burning" these were pre-medication and i ache. I am going through a lot of stress right now with purchasing a home. we hit many road-blocks and are suppose to close thursday..

 

[E.B]

I can understand your situation with all you have experienced, but you don't have to worry about als. Twitching in all places randomly as you stated is not Als. Twitching in general is not a cause for worry with Als. You are ok. Give the med some time and see if it works.

 

[redsoxygirl89]

I can understand your situation with all you have experienced, but you don't have to worry about als. Twitching in all places randomly as you stated is not Als. Twitching in general is not a cause for worry with Als. You are ok. Give the med some time and see if it works.

Thats what i keep trying to tell myself, its not located in one area or even one side of the body. it can be ANYWHERE! my boss/dr talked about how since my does is so small we have lots of increasing we can do. but she gonna keep me on 10mg for at l;east 2 weeks and go from there

 

[matisworried]

i'm really sorry you've had to go through so much trauma. it's absolutely understandable why your anxiety is so bad... especially surrounding your health.

what you are describing really, truly does not sound like ALS (or anything serious for that matter.) i'm telling you this as a person who 1.) has watched someone die of ALS and 2.) went through a year-long MS/ALS scare following an abnormality that was discovered on a MRI of my brain while looking for the cause of some hearing loss i've suffered. when i was in the middle of my scare, i had tons of very specific, real and terrifying symptoms including muscle twitching. NO ONE could convince me i DIDN'T have some terrible neurological disease... but i didn't... and as soon as i came to that realization, my symptoms started to go away. you are likely VERY FOCUSED on the sensations that are happening in your body. your brain is freaking out about (and possibly even creating) what could easily be normal body sensations.

ALS is a progressive disease. if you had it, it would continue to get worse. it wouldn't come and go. it wouldn't disappear when you weren't thinking about it. the fact that you don't have noticeable symptoms when you're busy is classic anxiety.

ALS is also incredibly rare. there are only 5,000 new cases reported annually in the united states which has a population of just under 330 MILLION. that means you have a 0.0015% chance of being diagnosed with ALS. another way to look at it (and this is a fun one): your chances of having ALS are 1-in 65,821. your chances of getting struck by lightning are 1-in-15,300. that means you are literally three times more likely to get struck by lightning than you are of having ALS.

if you're not worried about getting struck by lightning, which is MUCH more likely, than you have no business worrying about ALS.

If i can make one suggestion... please stop researching your symptoms. resist the urge to google your symptoms at any cost as it will only fuel your anxiety. 10 times out of 10, researching your symptoms will create more anxiety than it relieves. googling is so cancerous to health anxiety, that i'd even suggest canceling your internet and switching to a flip phone if you can't resist the urge... it's literally THAT bad for you.

 

[redsoxygirl89]

i'm really sorry you've had to go through so much trauma. it's absolutely understandable why your anxiety is so bad... especially surrounding your health.

what you are describing really, truly does not sound like ALS (or anything serious for that matter.) i'm telling you this as a person who 1.) has watched someone die of ALS and 2.) went through a year-long MS/ALS scare following an abnormality that was discovered on a MRI of my brain while looking for the cause of some hearing loss i've suffered. when i was in the middle of my scare, i had tons of very specific, real and terrifying symptoms including muscle twitching. NO ONE could convince me i DIDN'T have some terrible neurological disease... but i didn't... and as soon as i came to that realization, my symptoms started to go away. you are likely VERY FOCUSED on the sensations that are happening in your body. your brain is freaking out about (and possibly even creating) what could easily be normal body sensations.

ALS is a progressive disease. if you had it, it would continue to get worse. it wouldn't come and go. it wouldn't disappear when you weren't thinking about it. the fact that you don't have noticeable symptoms when you're busy is classic anxiety.

ALS is also incredibly rare. there are only 5,000 new cases reported annually in the united states which has a population of just under 330 MILLION. that means you have a 0.0015% chance of being diagnosed with ALS. another way to look at it (and this is a fun one): your chances of having ALS are 1-in 65,821. your chances of getting struck by lightning are 1-in-15,300. that means you are literally three times more likely to get struck by lightning than you are of having ALS.

if you're not worried about getting struck by lightning, which is MUCH more likely, than you have no business worrying about ALS.

If i can make one suggestion... please stop researching your symptoms. resist the urge to google your symptoms at any cost as it will only fuel your anxiety. 10 times out of 10, researching your symptoms will create more anxiety than it relieves. googling is so cancerous to health anxiety, that i'd even suggest canceling your internet and switching to a flip phone if you can't resist the urge... it's literally THAT bad for you.

Thank you for your words..! My twitches dont seem as bad as they were when this episode began overall about a month ago but still there. We currently live at my mommas house and our room is up stairs so i go and down multi times a day without trouble, and carry around my 3year and almost 2 year old with ease. so I keep reassuring myself. We are suppose to close on our house this up coming thursday,(it has very stressful 6 weeks, we hit about every hiccup possible in terms of the mortgage, so my boss/doctor thinks some of it will ease once we get the keys. And the fact my muscle hurt, burn etc makes my doctor believe its anxiety causing the tension and twitches. I have done some of those standing on foot,etc and can tackle them,

Usually I can brake things down into numbers like you did and can talk myself out of the anxiety, i did this when i expecting my youngest i had sudden fear of dying during birth. that i broke down the numbers of deaths per births, and broke it down by race, etc till my anxiety was finally happy with the number which i believe was still like 18 per 100,000.

 

[matisworried]

congrats on the home purchase! that's very exciting... and also very stressful, which is probably only adding to your overall anxiety level.

always keep in mind that ALS is a progressive disease. you would not, under any circumstances, be able to do all of the things you mentioned if you had ALS. people that have true muscle weakness due to ALS often can't even drive a car because they don't have the strength to push down on the pedals.

try not to spend too much time testing yourself. it's really unnecessary (and will only increase your anxiety.)

instead, keep the positive in the forefront of your mind! enjoy your house, your family AND YOUR HEALTH!

it sounds like therapy would be very beneficial for you. is that something you've tried or have considered?

 

[redsoxygirl89]

congrats on the home purchase! that's very exciting... and also very stressful, which is probably only adding to your overall anxiety level.

always keep in mind that ALS is a progressive disease. you would not, under any circumstances, be able to do all of the things you mentioned if you had ALS. people that have true muscle weakness due to ALS often can't even drive a car because they don't have the strength to push down on the pedals.

try not to spend too much time testing yourself. it's really unnecessary (and will only increase your anxiety.)

instead, keep the positive in the forefront of your mind! enjoy your house, your family AND YOUR HEALTH!

it sounds like therapy would be very beneficial for you. is that something you've tried or have considered?

I saw a counselor following my major panic attacki feel like it helped to some degree, but before i quit going i felt like i needed to go on meds then cause i still felt overwhelmed with life. . but our insurance change and we now to pay all visits up front before it starts paying 80/20 so to see one it was gonna be over $125 a visit so it got hard to afford and our new house payment is gonna be more than our last so I not sure it will be do able right away. unless our insurance changes come Jan

 

[matisworried]

I saw a counselor following my major panic attacki feel like it helped to some degree, but before i quit going i felt like i needed to go on meds then cause i still felt overwhelmed with life. . but our insurance change and we now to pay all visits up front before it starts paying 80/20 so to see one it was gonna be over $125 a visit so it got hard to afford and our new house payment is gonna be more than our last so I not sure it will be do able right away. unless our insurance changes come Jan

hopefully that's the case and you're able to start going again. with all you've been through, i'm sure it could be really beneficial. in the meantime, maybe consider watching some videos and reading about cognitive behavioral therapy techniques. maybe listen to some podcasts about anxiety. there are also other much more affordable options live internet/skype therapy. these typically cost a fraction of what you'll be charged through your normal medical provider.