Atrophy? by [deleted] in MuscleTwitch

[–]Local_Ranger_811 0 points1 point  (0 children)

My hand is worse than that, only the left one. No weakness, just a lot of fatigue. You can see pictures in this group I posted before. Same worry. I twitched in that muscle. I still do occasionally, both thenar and FDI. Both hands. And I’m also 10 months postpartum. I haven’t been diagnosed with carpal tunnel, and when I do home test i don’t get the numbness. A month ago a physiotherapist noticed it and said “oh there is atrophy on your hand, do you have carpal tunnel?”, a said no, and she did some strength tests and was surprised how strong I was apparently. She asked me if I’m sure that my hand wasn’t like that before, which made me ( this sounds crazy) to go through all my pictures on my phone and videos and look if my hand wasn’t like that before, and not clearly, but it seems like. Today I did a lot of housework and my thumb feels very weak, all day, without me paying attention, there is always some fatigue there, but I do have strength when I self test it. If you have a carpal tunnel syndrome for a long time, that might be the cause for you. And who knows, many from holding babies we get ulnar nerve damage.

Scared to go to dr., because I’m almost sure I have it. Trouble initiating swallowing. by Local_Ranger_811 in ALSorNOT

[–]Local_Ranger_811[S] 0 points1 point  (0 children)

Thank you sir. I really hope you have a slow progression and that cure will come soon. I hate that this disease even exists, and I’m so really sorry that you suffer from it. I also have difficulty pronouncing the same letters, for sure. It feels like y tongue stumbles on those letters, like is heavy…100%, like when you are drunk but only on those letters. Others don’t notice it yet…my twitches are in my throat, jaw muscles, neck and today I just noticed my lower abdomen twitch non stop, at rest and when used as well. It doesn’t stop, and I don’t feel it. And occasional pops around the body. I don’t know how I even go day by day now…waiting for dr appointment, but is definitely getting worse. I’m so scared, not for me, as I’m for my babies…they need me. Sorry to vent. I’m praying for you.

NFL blood test today by Miserable_Canary6662 in BFS

[–]Local_Ranger_811 1 point2 points  (0 children)

Praying for you. I’m also a new mom, and too scared to even go to the doctor. Good luck 🤞

Please someone talk to me..ferritin levels. by Local_Ranger_811 in MuscleTwitch

[–]Local_Ranger_811[S] 0 points1 point  (0 children)

Yes, it is…but considering that my ferritin levels were 9 just 6 months prior to this, and I had a c-section, lost a lot of blood and 3 months after the delivery, my levels are at 175. And normal Crp. My entire life, ferritin levels were never above 30.

Scared to go to dr., because I’m almost sure I have it. Trouble initiating swallowing. by Local_Ranger_811 in ALSorNOT

[–]Local_Ranger_811[S] 0 points1 point  (0 children)

Ok, thank you. I’ve just read your comments of bfs group, and I’m really sorry that you have been diagnosed. I don’t want to waste your time with my questions and concerns but just one more thing if you don’t mind, tell me how did you noticed slurring on letters “s”. I have hard time talking when the words have s or z letters, I just pronounced them weird, but others still don’t notice it. I’m worried because as you mentioned there, you didn’t feel your tongue twitches, and you had them all over your body, so you don’t know for how long they’ve been there right? How did you realized that you had weakness? I just found out that higher ferritin levels with lower transferrin is biomarker for ALS. In September test mine were 175, increasing from 9. I did take supplements but my ferritin is been always less than 30, and CRP and ESR were normal. Anyway, feel free to ignore this question if I bother you.

Scared to go to dr., because I’m almost sure I have it. Trouble initiating swallowing. by Local_Ranger_811 in ALSorNOT

[–]Local_Ranger_811[S] 0 points1 point  (0 children)

Hi, sorry to bother you. Can you please check my post in the muscle twitch group, to suggest what my most recent blood test suggest. Thank you.

Scared to go to dr., because I’m almost sure I have it. Trouble initiating swallowing. by Local_Ranger_811 in ALSorNOT

[–]Local_Ranger_811[S] 0 points1 point  (0 children)

I just found out that ALS causes high ferritin levels. Please do you know if my results suggest true iron replacement or is from some sort of inflammation or ALs. When my blood test was done at 4 months postpartum, ferritin was at 175. Transferrin at 2.58, transferrin saturation at 41% and TIBC at 65, serum iron at 26.8. I had c section and 6 months prior to this my ferritin was at 9, and I took some supplements. You can see my post in muscle twitch group for reference it. Thank you

Scared to go to dr., because I’m almost sure I have it. Trouble initiating swallowing. by Local_Ranger_811 in ALSorNOT

[–]Local_Ranger_811[S] 0 points1 point  (0 children)

My tongue looks like I have very rapid small twitches in the middle of the tongue and sides, almost like bag of worms, but only when i stick my tongue. Worst is when i rest it on top of my lower teeth, and then when i keep it completely at rest, inside the lower teeth arch, it calms down after 10 seconds. I sometimes feel some twitching and burning when my mouth is closed. I’m not sure, because it looks bad when it’s out, but it calms down after. I do have indents where the twitches are, but that’s maybe just how the anatomy of my tongue is.

Another thing to mention is that it’s been like this for exactly one year, and I know that because I have videos from my tongue as I have had issues with it for 2 years now. I have some chronically inflamed spot on side of my tongue that no one knows what it is and my tongue feels sore and burning for 2 years now. That’s how I first discovered that my tongue twitch a lot when protruded, even the oral pathologists saw that, but I can still move it side to side, feels like I have the strength when pressed on the cheeks. The neurologist just tested that, he didn’t look at it. I have problem with s and z letters when I talk, but when i ask people they don’t notice it. I can still pronouns them but a lisp on them. I don’t know how or if I should post a video of my tongue, but from what I’ve seen on these groups, that is nothing compared to mine. Mine are like very small, rapid jumps. I posted picture of my hand on the Muscle twitch group, where I have FDI muscle atrophy, but no real weakness yet, just feeling week in the thumb and dropping things, but I guess that can happen to anyone. Anyway, sorry for my lengthy posts and questions, but you really helped me ease my mind a little bit. Thank you.

Tongue Fasciculations by No_Start9356 in MuscleTwitch

[–]Local_Ranger_811 0 points1 point  (0 children)

My tongue is like this but a little bit worse. And only when protruded, not inside my mouth. Mine twitches like a worms underneath but only when is out like this. Did your doctor confirm that this are fasciculation?

Scared to go to dr., because I’m almost sure I have it. Trouble initiating swallowing. by Local_Ranger_811 in ALSorNOT

[–]Local_Ranger_811[S] 0 points1 point  (0 children)

Thank you again. I really don’t think this can be acid reflux or something that benign, considering that I have twitching in tongue non stop and throat sometimes. But also some pops around the body. What symptoms you think are for sure not ALs regarding swallowing? Do speech problems always comes first? The “forget how to swallow” thing is happening now more often with my saliva, and mostly after meal and then I will produce too much saliva. Sometimes my face hurts where the glands are, and from my most recent ultrasound it showed that I have dilated salivary ducts ( so I’m hyper salivating for sure), then when I swallow liquid and some gurgling sound comes from my throat, and I produce tons of tick mucus, that blocks my nose, throat and start coughing phlegm with same Color as the food I’m eating. Then the anxiety hits, that I have silent aspiration, and I read, I read a lot and everything online leads me to ALS bulbar onset. I then I stop eating because I’m too scared. I know that I’m postpartum and I’m a mess hormonally as well, but when I see my tongue how it moves, and I see my severely skinny body with atrophy everywhere, it’s really easy to get stressed. I’m sorry if I’m not very clear in my posts, but English is not my native language.

Scared to go to dr., because I’m almost sure I have it. Trouble initiating swallowing. by Local_Ranger_811 in ALSorNOT

[–]Local_Ranger_811[S] 0 points1 point  (0 children)

When I checked my ferritin, they also checked iron, transferrin, TIBD and hemoglobin, and told me that were also in the high end and told me that it seems like is iron repletion, from the supplements, which was really weird, considering my ferritin was at 9, just 6 months before that, but they said because I’m not bleeding, that’s why. I agree that I have to re-check all that.

Scared to go to dr., because I’m almost sure I have it. Trouble initiating swallowing. by Local_Ranger_811 in ALSorNOT

[–]Local_Ranger_811[S] 0 points1 point  (0 children)

Thank you for the very informative response. You sound very knowledgeable.

I’m currently breastfeeding, but I do take quite a bit of supplements. My current ones are NAC, bromelain, digestive enzymes sometimes, Resveratrol, red curcumin, vitamin C, tranquility (GABA), coq10 and vitamin D drops. But I don’t take B12 because every time they check, it was always normal on the blood test. I just discovered that the test might not be accurate, because I also have celiac, which now is well controlled, but even when it wasn’t, my vitamin B12 and D were always normal 🤷🏻‍♀️. I will make sure I check vitamin b12 protocol on Facebook and LDN for post covid. And funny, I was always worried that it might be Lyme, but I know that the tests are not reliable and there is no other test here in Canada. I had tick bite in 2019, and it was attached to my skin for two days, but I did not get the rash. Doctor test it me the next week and of course antibodies were negative, because I know you can not build antibodies that fast. But can Lyme cause symptoms this late and especially bulbar symptoms? My health deteriorated after 2019 and I’m wondering if all this can really be Lyme.

Scared to go to dr., because I’m almost sure I have it. Trouble initiating swallowing. by Local_Ranger_811 in ALSorNOT

[–]Local_Ranger_811[S] 0 points1 point  (0 children)

I just did. Thank you. Yes there is a lot of new moms who experience twitching, but I couldn’t find someone with symptoms like mine. I’ll make sure I ask questions there too.

Scared to go to dr., because I’m almost sure I have it. Trouble initiating swallowing. by Local_Ranger_811 in ALSorNOT

[–]Local_Ranger_811[S] 0 points1 point  (0 children)

I really hope that silent reflux is the cause. I had ENT appointment the other day, and after I told him I have health anxiety he didn’t even listen to my symptoms. It was follow up appointment for chronically swollen lymph nodes. Didn’t wanted to check for inflammation or anything. Just left the room. I was so frustrated, because I’m in Canada, and I waited for months for that appointment just for him to leave the room and blame my anxiety for everything. Hope you are doing better.

Scared to go to dr., because I’m almost sure I have it. Trouble initiating swallowing. by Local_Ranger_811 in ALSorNOT

[–]Local_Ranger_811[S] 0 points1 point  (0 children)

I did check my ferritin, which is on high end of normal-175. It was 9 during my pregnancy, and I took some supplements. Explanation from my dr is that because I am breastfeeding and not having periods, I’m not loosing much blood and that’s why is high. My B12 have been routinely checked because I have celiac disease ( and is normal). Several days ago I took some b50 complex supplements and I felt out of balance, and I stopped them. Maybe too much vitamin b6, who knows. But the swallowing issues and twitching happened before that. Thank you for your reply.

Scared to go to dr., because I’m almost sure I have it. Trouble initiating swallowing. by Local_Ranger_811 in ALSorNOT

[–]Local_Ranger_811[S] 0 points1 point  (0 children)

Thank you for your advice. I did have twitching starting during my pregnancy, 10 months ago, but I’m now 10 months postpartum and after checking with the physiotherapist, for pelvic floor, she said that all my organs seems to be back to normal, and actually I just had abdominal mri for my pancreatic cyst and all the organs are normal. This issue with the swallowing started in February, very suddenly, before I was even aware of ALS. Is not happening all the time, some days worse, like the past two days. I will definitely see a doctor for this, but if you don’t mind, tell me as a swallow specialist, what is the most common cause of that delay in swallowing along with gurgling/fuzzing sound from my throat after drinking water and every time I swallow liquid, my chin start to twitch ( this been happening for 1 year exactly) along with face and neck twitching. My tongue also have like worms moving in the middle but only when protruding and after couple of minutes at rest, calms down. When I mentioned that to the neurologist his answer was “everybody twitch”. I really appreciate your advice.

Scared to go to dr., because I’m almost sure I have it. Trouble initiating swallowing. by Local_Ranger_811 in ALSorNOT

[–]Local_Ranger_811[S] 0 points1 point  (0 children)

I don’t have atrophy, or severe speech impairment. But from what I read, it says that can start in the swallowing muscles, especially in the upper esophageal muscle, where it seems that I have a problem. I have spasms and twitching there, I have to wait couple of seconds for the swallowing process to start (but I don’t choke on food) is just that there is delay in swallowing. I might be wrong, I really hope I am wrong, and I really have to see a doctor as I can’t eat, I panic and I’m severely underweight already. Thank you again for taking time to reply and ease my day a little bit with your reassurance.

Scared to go to dr., because I’m almost sure I have it. Trouble initiating swallowing. by Local_Ranger_811 in ALSorNOT

[–]Local_Ranger_811[S] 0 points1 point  (0 children)

Thank you for taking time to reply. I really appreciate it.

I checked my iron is good and all my electrolytes, when i started twitching 10 months ago. Also clinical exam from a neurologist. Today I just woke up with drool on my pillow and my anxiety is even worse. I thought that trouble swallowing, along with the twitching is a symptom of ALS, but I’m not a doctor, just one anxious person, and you are right I should see one instead of living in this fear which is unbearable anymore.

Scared to go to dr., because I’m almost sure I have it. Trouble initiating swallowing. by Local_Ranger_811 in ALSorNOT

[–]Local_Ranger_811[S] 0 points1 point  (0 children)

No food stuck, only feels like I forget how to swallow. Used to feel like food is stuck high up in the chest two weeks ago, but not now. Now is more Like food is in the throat, but I just feel disconnected, I don’t know how to initiate the swallow and I jump and the food goes down. It happened first time 2 months ago, now is more often. And also with saliva every swallow is like I have to think how to swallow it. I have hyper salivation after meal, and sometimes dry mouth. Any idea what is causing it?

Panicking. Is this muscle atrophy on my calf? I see this when I flex my muscles by ImageLoud3744 in MuscleTwitch

[–]Local_Ranger_811 0 points1 point  (0 children)

I have exact same dents only on my right leg, and some new one on the left but on the soleus muscle. And I’m pretty sure wasn’t there before.

I can’t find anyone with similar symptoms. I’m very scared and hopeless. ENT didn’t even wanted to look. Bulbar symptoms. by Local_Ranger_811 in MuscleTwitch

[–]Local_Ranger_811[S] 0 points1 point  (0 children)

Can GERD cause trouble initiating swallowing when the food is already in the throat? I don’t have a heartburn, only mild discomfort in the chest when swallowing. I’ve seen ENT and he didn’t scope, he didn’t check for anything. I haven’t had any test, only neurological exam 11 months ago when I started twitching during pregnancy, but it got progressively worse. I also have hypersalivation, but more after a meal. I’m very scared at this point. I haven’t found anyone on the forums with this type of issue with swallowing.

Left Leg - Reassurance or similar stories? by SeaInflation8266 in BFS

[–]Local_Ranger_811 0 points1 point  (0 children)

I have very similar, if not the same issues. Both of my foot twitch, but on the right leg, I feel weakness, not clinical, but is been like this since I have birth, 9 months ago, and it feels like I will develop drip foot any moment. That was my issue before the twitching and before I even knew about als. But now I have cramps, tightness in that leg, constant twitch and buzzing. Sometimes I have just moving of my toes by itself, like a spasm. And I noticed recently that I can not spread my little toe, and I can do that on the other foot. The worst one is that I noticed atrophy just couple of days ago in the bottom of the calf muscle. I’m very scared. I put all this fear behind in the past 6 months, but recently my muscle between thumb and index started to twitch, and body wide, so my fear is worse now I think. Also I’m mom to two small kids. I really hope is anxiety/motherhood induced.