MotherOfMaya

Hi there and welcome, I and so many others have been down this rabbit hole and it's one of the absolute worst holes to fall into. You can go back and read some of my posts and you can see that they're so very similar. I too had widespread body twitches and one thing I learned the hard way is that your mind can do some crazy effing stuff! I am so sorry you are suffering like this. What have you used for coping skills in the past that have helped? I know it's hard but you have to try and keep it together for your daughter! Take deep breaths, listen to some calming music, watch some ASMR, do a hobby...anything to distract yourself. Once you stop focusing so much on your body the twitching will probably stop! One thing that has helped me over and over is finding the old BFS forum and reading about how so many other people have experienced this same thing and turned out to be nothing at all. You can read stories here too! There are posts on this board about reasons why you do NOT have ALS. Check those out too. But the very most important thing is to distract yourself. Reach out to me if you need to talk. I am also the mother of two kids and can relate to what you're going through.

I had this as well last month along with an eyelid twitch that just would not go away. From there I had my third or fourth ALS scare, convincing myself food was going into my sinuses, etc. Health anxiety is a bitch! Here are some things that have helped me: 1) Perspective. You have had this going on for four years. You can rest with this knowledge. If it were anything nefarious, you'd be in big trouble by now. Time is a great treatment for this fear. 2) I found Cherelle Thinks on YouTube. She is a fellow HA sufferer and she has videos on these exact issues and watching her really helped ease my mind. I also reactivated my FaceBook just so I could join her support group. 3) I read everything I could about BFS, Benign Fasciculation Syndrome. This is likely what you have and definitely NOT ALS. I hope you feel better very soon...this is one of the worst HA fears around, in my opinion.

I'm so pissed at myself for being here! A week ago I thought I felt water going into my sinuses from my throat when I was drinking water and now I am hyper-focused on everything I eat and drink and keep feeling like food is going up into my sinuses. I then came here to see this post from last year when I was experiencing this. Do you think it's possible it's A*S this time??? I cannot believe I am even going down this road again. So frustrating! What else could cause this sensation? I also feel like I've had a hoarse voice over the last week or so. I'm trying so hard not to freak out...

To add....my pulse-ox has been in the 98-100 range so I know I'm not in any distress and I don't feel short of breath. It's just such a weird thing. Should I see a doctor about it??

So here I am again.... I'm not in a full-blown panic at the moment but I have been close in the last couple of days. I started having cold symptoms last Wednesday and they have been very mild. I had covid in September so thought it must just be a cold. Just to be safe because of having family over on Christmas, I took an at-home test on Thursday and it was clearly negative. Well the day after Christmas I woke up with a migraine, which I never get unless I am hung over...or the last time I had Covid. So I took another at home test and it popped up positive pretty quickly. I then went to CVS for a PCR test on Monday, which came back last night as positive. I am just at the end of that three month window where they say you can continue to test positive. So now I don't know if I was reinfected or not. Fine, whatever. However, last night I noticed when I took a deep breath and breathed out I can hear this whistling/squeaking noise at the end of the exhale. My mother is an RN and listened to my lungs with a good stethoscope and hears absolutely nothing, but then I had her put her ear to my mouth and she could hear it. What the heck could this be?? I am like terrified I have COPD or my throat is closing or something. Has this happened to any of you? It doesn't even seem to be every time I exhale but enough where it's freaking me out and I cannot stop thinking about it. I am making myself light headed by taking so many deep breaths. Help please and thanks so much in advance!

Ugh, this is the worst time of year, isn't it? I am from the Northeast US and struggle with this as well and my children have no idea what's happening when it gets dark at 5 pm. I have a lightbox that I have never used but I should make some use of it. I would LOVE to go lay in a tanning bed once a week if it weren't bad for my skin. I went outside the other day when it was sunny in a black shirt and I felt like I was absorbing the sunshine...it felt so good! I think increasing your antidepressants for the season is not a bad idea!

I just read a study to see what you were talking about and it's specifically referencing Covid long-haulers and especially those that were hospitalized and then developed long-haul symptoms. I had Covid at the end of August/beginning of September and have no lasting effects except for a slightly decreased sense of taste and smell and that is helped by taking daily Zinc, which supports those things. Are you doing anything to help yourself get into better shape? It's pretty well-known at this point that obese people have are some of the most at risk from Covid. If it's been a year, I am thinking you are in the clear as far as Covid goes. Talk to your cardiologist about the best way for yourself to get into shape and research some dietary changes. I am speaking from experience here...I am a large girl and started intermittent fasting and eating low carb/no processed carbs and I quite easily lost 30 pounds for the first time in my life. Losing even 7 percent of your body weight can make a huge difference! And yes, with all of those tests they would have found something, I am sure! Breathe easy and focus on the things you can control...your diet and exercise!

Any updates on this? Hope you're doing okay!

I had Covid a month ago and it did go into my lungs but I would say pretty mildly. I had some tightness and pain when I tried to inhale deeply and that caused me a lot of anxiety. I strongly suggest getting a pulse-ox for home. I used it every ten minutes through the entire ordeal and while everyone thought I was nuts it helped me calm down so much when I was fearing I couldn't breathe. As far as your husband, I would personally ask for budesonide and IV vitamin c. In high doses. I hope everything works out okay!

Thanks! They're okay 🙂 I brought my daughter to the doctor AND dentist because her gums bled a little three times when I brushed them last week and they looked swollen to me. I LEGIT thought she had leukemia. I was a hot mess! I really try not to do that with my kids because a) it scares them and b) I REALLY don't want to be THAT parent....and I don't want the doctor to think I'm nuts but I think it's too late for that to be honest! As far as my son's lymph nodes, I would say the took a good three weeks to go down to what I felt was "normal" I can still feel them there, but they're tiny now. Once they get inflamed, they may never go back to the way they were. Both of my kids have lymph nodes that I can feel in their groin. I truly believe for some people, this is normal for them. We both need to stay the eff away from Google. Easier said than done though, I know. Let's make a pact!

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Well that all sounds great! I wish I could be one of those people who lived in the moment and did not look for doom and gloom around every corner. It's so exhausting having an anxiety disorder, isn't it? I am currently calling around for new therapists. Congrats on the new home! About 13 months ago I found out that my husband of 9 years, 12 together with dating, had a 1 year old. I found out because I found a letter from Child Support and then was able to find a court case in our court system with his name on it. He has a very unique name so I knew it was him. Then I confided in a friend, whose husband works with my husband, and she was able to find out that it's pretty well known at their job that this has happened....great! I was stunned and shocked and so sad at first but we had small kids so I tried to get him to talk to me but he stonewalled me and gaslit the entire time. I then found the positive DNA test results and he still denied it. During this time, my aunt, who was my landlord, decided she wanted to rent the home we lived in to her daughter, my cousin and best friend so I had to move. I am now with my two children and my parents. It's super stressful and I am depressed. I know that these hard times trigger my anxiety but I cannot, CANNOT stop myself from freaking out. I have my daughter going to the doctor at 4. They are definitely going to be looking at me funny.

We do have to learn to trust the doctors when they say everything is okay. I too have this issue and worry and worry and worry until my worry burns itself out, even after seeing a doctor for my child. My son had seriously swollen lymph nodes on the back of his head and they took weeks to go down. I also feared the "C" word but they eventually did go down. If you saw a doctor, who felt it, and thought it was okay, it's okay. They would NOT let you leave the hospital if they thought it was something dangerous, I promise! I totally get how you feel and it's easy for me to be on the outside looking in on your situation and have perspective but it's so hard with our kids! I am currently dealing with something regarding my daughter as well. We just want our kids to be okay!

Sorry for the late reply Doug! I am doing just okay at the moment. I am worried about my daughter. I have had some majorly stressful life experiences this year and everything seems to be piling up on me. Thanks for asking! How are you?

I had Covid about a month ago, and I too freaked out...and posted here. I am pretty overweight so that was my main cause for concern when I tested positive. I lost my sense of taste first, and smell came after and it gradually decreased until it went and while it has greatly improved, it still hasn't returned to 100%. Load up on vitamins (500 mgs a day of vitamin C, 5000ius a day of vitamin d3, quercetin, and 50mgs of zinc) and see if you can get your hands on some NAC (Ivermectin too if you can get the human version). If things get worse, you can look into getting monoclonal antibodies if you want to. I scheduled an appointment for the antibodies and then read the paperwork and decided against it but a lot of people are finding it very helpful in getting them back to feeling better. Something that kept me sane throughout it was using a pulse-ox. Even if I was panicking and feeling like I couldn't breathe, the pulse-ox told me I was fine and that definitely helped my sanity. You will be okay! Get tested again if your daughter is negative but if she is positive you can feel pretty sure that you have it too.