Ellebel

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Ellebel last won the day on May 29

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About Ellebel

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  1. Thanks @AriaRen @MARC @Bobnnat @AriaRen I know i even told you a couple of times to not worry. Isnt it hypocryte?! @Bobnnat Thnx that does provide some clarity. I know i have anxiety and i know anxiety can cause this. hell, it has been caused for 4 years lol. But this twitch is soooooo different. It's fine, flickering, super rapid, nearly invisible tot the naked eye 90% of the time. EXACTLY how 'they' describe twitching in ALS (as opposed to in BFS where it is slower, readily visible and on and off). My thenar goes on literally 5 times a second every second of every day since say 10 days now. Its maddening! I am beyong myself with fear..
  2. Thanks @Bobnnat and @MARC for reaching out!! The funny thing is, i acutally KNOW you are right about this. Its 95% of the time not how it starts, in an already rare disease. I just dread i read about the (RARE!) cases where it did. Googling is sooo bad for us *(me), but its somehow like an addiction that always ends up making things worse. I will fight this and hopefully climb out a bit sooner than after another year lol. I need to remember allll those other twitching hotspots that made me super nervous (THIS TIME IT MUST BE BAD BECAUSE......) and figure i didnt have anything then either. My brain is just not there yet..
  3. My son has an enlarged (peanut sized) lymphnode on the side of his neck, behind/below the ear. It started when he was about 8 months old, or thats when i noticed. Its still there now, he is 16 months old. Still scares the crap out of my, but the doc didnt seem very concerned. She ordered and ultrasound to be safe. Looked all good. Another one 2 months later as follow up; no change. So she said we should leave it at that. I am a bit less concerned now, but still uneasy becasue i would think a reactive node would go down by 8 months...
  4. I have lots of HA my whole life, but nothing has been as bad as the ALS rabbit hole. It started 4 years ago and took me at least a year to get slightly better and two years to climb out completely. the past two years i actually had hardly any twitching. Some pops here and there, a pec that would go for a day, but thats it. Untill last weekend........ Last friday or saturday i noticed my thenar pad *(the fleshy part under the thumb) was twitching quite often, especially upon waking up. Big thumpers that moved the thumb and would keep going for 10 mins or so. By monday, i really became aware and started looking at the muscle. I realized it was twitching way more than i could readily feel (more of a slight tickle), pretty much after every time i moved the thumb. After that i got a bit nervous. Then did the unthinkable: googled again and started looking with a flashlight which made me realize the damn thing is actually twitching 24/7 and multiple times a second. it just keeps going, only the volume goes up and down. F*ck, never had that before. One so extremely steady and often. almost a week now. Also, being excerbated by movement of the muscle, isnt that a bad sign? Shit, im in trouble. Mentally for sure, but maybe also physically. Feel like i am just waiting for the rest of the hand and arm to join the circus which would compare perfectly to an ALS case ones read about on a (BFS) forum. I can actually feel the rest of my arm tickling away already, like its starting with fine fine twitches. I did not expect me to get this bad again over twitching. i thought i was done by that after 4 years. But nooooo since it was gone i feel like this is 'new' and must be bad. Also, i hardly ever twitched above the waist before so extra scary. Please, i am drowning here... get me out of this hole!!
  5. @davide.h im so sorry for your predicament. How come its been so hard? lots of hugs!
  6. Hello @PennyPanic so sorry to hear you have the same issues as me. Big hugs!!! first of all: dont worry about the precancer label. It sounds worse then it is. That stuff hardly ever turns into something and even if it does it is highly treatable!! As for burning them off: if its the gold standard, how bad can it be? can u imagine how many people have that burned off daily? with zero bad consequences? Anyway: its off now! no point in worrying ;) Okay: your feeling of doom. I get it. I disagree, but i get it. Let it pass. If you have to burn off stuff often; do it. Dont sweat it. Worse? With your vigilance? never! You're life is not over. Time is very relative. Your life is NOW, whether 20 or 70. Live it! How bout that for a virtual slap? lol. So now i can go back to my absolutely ridiculous fear of ALS ;)
  7. Hello fellow worriers (warriors?!), Over the years i have received help from many of you and this site and you guys have my eternal grattitude. I would love to say i am doing better. I am not though. From all kinds of fears over my health of my sons health, i worry about the world and i even have had a bad case of existential depression. I will not go into detail because i wish this upon no one and it might trigger. So, i want to give back. I want to help you. I have noticed also i can be much more realistic when it comes to YOUR issues, not mine. Anyone in need of some advice or realism? Hit me!
  8. Hello @davide.h no i have not. But as said this has been going on on and off for 4-6 years at least. Would be one hell of a constipation lol
  9. Nope, the Netherlands. My only option is going private in germany.
  10. Besides the slim odds of PC at your age, i have had this fear as well and concluded that with PC you are SICK. Like very very very sick, fast. Dont worry, you are fine!
  11. No advice, just wanted to let u know that i feel u. I am driving my doctor insane over an enlarged lymphnode my son has had for many months now.
  12. Unfortunately it wont here because i am to young for screening (32) and besides screening insurance only pays after GP refers đŸ¥º
  13. Thank u, but could one of those linger for 6 years? And play up every other week or so?
  14. @MARC i have spoken to my doc many times about this but she feels it cant be something since it hasnt really gotten worse in 6 years and my colonoscopy was clear back then. I dont really trust her judgement because i feel it has ‘returned’ since my pregnancy (more often) and something new could have happened since (or missed with) the previous colonoscopy. Thats why i am considering private even though its cost is a months salary...
  15. Thank you MARC for the reply! Since you are the only reply.. i can answer my own question i suppose... Not very common .. So guess i am going private for a new colonoscopy.