u/Icy_Signature9743

Hey everyone I really appreciate those who have taken the time to read and respond to my previous post regarding my ongoing concern. it’s been a bout a month since my last post on this sub and roughly about a month since I’ve seen my doctors. As about a week ago I lost my health coverage as I was making to much money to be considered for Medicaid. I come from working class family but as of recently from my time off uni the state came to the conclusion that I can pay for my insurance till I return to school in the fall. That being said my new coverage isn’t effective till July 1.

Thats a big gap for me in terms of what I have been experiencing. I now am no longer able to freely go to my doctors without the immense financial stress hanging over my head. My symptoms seem to have gotten better from the last time that I posted but I still have twitching here and there and am worried about perceived weakness and atrophy despite my clean blood work for NFL and CK and normal clinical exams. While I mentioned that my doctors believe it could be thyroid and primarily stress related I’m not entirely convinced. I have definitely eased my self with stress of ALS to the point where I actually went out and played soccer for the first time in around 6 months. All though it felt off I feel that could be due to my inactivity. One question I have is would I be able to still play soccer with early als?(symptoms started in April) I am more hopeful as the position I play as goalkeeper really focuses on using my legs to push my self off the ground. I am still able to dive on my left side (the side I believe to have atrophy) with no issues.

To wrap it up I was able to get an appointment through a family friend who's clinic is funded by the DHS, meaning I can go regardless of my means to pay. In summary do you think that I should be concerned with ALS after I was still able to play soccer? This is giving me hope up until I see my neuro in August. There is a lot of evidence that has pointed away from ALS and a lot of those who have responded to my posts have said I shouldn’t even consider it given my age at 21. However I know that this is a disease that progresses rather Slowly in the terms that it could take months to see a difference, which is why I am still concerned. Nevertheless I want to respect the sub and not constantly be venting which Is why this will be my last post till I see my neuro in the fall which should give me the answers I need. Once again thank you for your replies.

Hey everyone wanted to update as to what has occurred over that past month and some of the test that I have gotten back. Around sometime in April I came onto the subreddit to address my concern regarding some twitching and notable difference in my left leg along with a loose feeling sensation on the left side of my body. For those who haven’t read my previous post, I am a 20 year old male who has had there thyroid removed due to diagnosis of papillary thyroid cancer in 2019. I mentioned how due to not taking my medication(levothyroxine, thyroid stimulant) for over a year consistently and these symptoms arising 4 doctors came to the conclusion that it could be due to my thyroid condition and told me I had severe anxiety. I wasent convinced and went to see two additional doctors who both told me I had no clinical weakness and also tested for specific clinical indications for ALS. One family friend MD ordered multiple blood test to begin to rule out markers for ALS and other disease that could mimic. I got my results this morning. A couple of abnormalities

TSH: High 8.73 normal range .45-4.500uIU/ml

Alubmin SPE QT:Normal range: 2.9 - 4.4 g/dL my level 4.7

Other than those two abnormalities everything else was stable the two biggest indicators I was told to look for were NFL and CK. Both seemed to be within normal range NFL was at .95pg/ml and CK at 68U/L. I will be going over these with the doctor this Wednesday. He reached out and said there is no indicators that point to ALS and said no atrophy or clinical weakness were present. With that being said should I stop pushing for answers despite the twitching, it’s super draining and taking a toll on my mental health. Every doctor I have seen has said there really isn’t a need to see a neurologist, my PCP did not want to refer she ended up doing so for peace of mind but said she doesn’t believe it is necessary same thing was said by my other 2 doctors. Should I put it to rest?

Hello everyone I came onto here to discuss a couple of symptoms that I believe to be alarming with being related to als but want an opinion as to what it could be related to.

I am a 20 year old who has a very long medical history. In 2019 I was diagnosed with papillary thyroid cancer at the age of 14, thank the lord I was clean the following year after total thyroid removal and have since been clean. Immediately after surgery I was told to start a medication by the name of levothyroxine at a dose of 175mg which would now act as my thyroid.(Relevant for later) At the start of 2024 I felt as though I was at peak in my health and life and decided to stop taking my Levothyroxine constantly. I would continue this for up until present month with little dosages here and there. Fast forward to this month I started experiencing immense chest pain that prompted me to go to the er for a medical evaluation. After being seen I was told that I had muscular skeletal irritability as my vitals where stable, ekg was good and so was my chest xray. Here is where my concerns and uncertainty comes in, when they took my blood tests they mentioned that TSH was abnormally high which was congruent to me not taking my medication. However every other blood test came back normal. since then I decided to hop back on my medication as my doctor said it could be related.

So I started taking my levothyroxine again for about a steady 3 weeks till present day. After about two weeks I found myself back In the er due to insane amount of tingling in my left arm while also having a strange symptom of feeling loose overall on my left side with a brief noticeable mark of twitching in my inner elbow. I was told that I had no visible weakness nor clinical weakness and that at my age I should not be worried about ALS.

So I went home and not even a day later I found myself right back at the er with cramping In both my ring and pinky Finger with again still noticeable little twitches here and there and jello like feeling in my leg and arm. Fearing that It could be a stroke I went o get check and was told I was fine and that it could’ve that it was ulnar nerve was compressed. Following day I had a chiropractor take a look at me, after he was done he said I could be suffering from low vitamin B and was told to get on vitamin B and see where it goes from there. After the adjust took place my fingers opened up within hours of the treatment and since been fine.

Due to my symptoms I became very worried and met with my PCP and ENT surgeon to evaluate me. I went and explained my concerns and my PCP, she told me that I was fine healthy young man after conducting reflex’s test and strength tests. However they did mention that I need labs to see if I had an overactive thyroid or vitamin deficiency that could be related to the symptoms im feeling. So I got tested and waited for my results, I was lucky enough to get two appointments the same day and went to see my ENT who looked at my throat and muscles in my throat to rule out possible issues related to ALS. After both test they said I had severe anxiety and that there was no referral needed in regards to a neurologist. My result came back the following day that reflected a couple of abnormalities. My Vitamin D was low at 19.1, my TSH was elevated at a 5.32 and my alk phosphate was a little low which could be related to the low Vitamin D. Both doctors came to the conclusion that I could have a severe case of hyperthyroid which is now taking a toll on my body.

They both told me that I had severe anxiety and that I shouldn’t be worried about ALS. My final symptom that has sent me over the edge has been a significant loss in muscle in my left leg. I had it when I went to the doctor but didn’t mention it, they obviously didn’t notice it as no comment was made. This symptom along with random little twitches and body weight fluctuations has sent me down a rabbit hole. I have now been told by 2 MDs an ENT, a PA and 4 NPs that i have nothing to worry about. I came to a his subreddit to get a different perspective, do you think this could be related to thyroid issues or beginning symptoms of ALS.