ALS starting in the trunk of the body

Hello @j77, It's good to ask questions when you are struggling to find a diagnosis and treatment. While you wait for members who may have experience to respond, I thought I would share a reference from the ALS Association that may help:
--- Stages of ALS: https://www.als.org/understanding-als/stages

I thought it might also be helpful to scan through the discussions and comments on ALS symptoms. Here is a link to the search results for "ALS symptoms" showing the discussions, comments and more - https://connect.mayoclinic.org/search/discussions/?search=ALS%20%20symptoms,

Has your neurologist scheduled any additional tests to try and figure out what is going on?

Thankyou so much for responding!I will take a look at what you sent me.The neurologist I met with is definitely not about to look outside of the box.When I asked him if there is a possibility I had ALS he did not even want to hear it.I did make an appointment with another neurologist.I was very healthy before all of this came on.I am in my 40s and walked about 8 miles a day.The only issue I had was anemia from heavy periods for years.I do think that the iron infusion/Possibly covid and maybe years of anemia did contribute to this.The scary thing is that the Doctors are only finding a bunch of little things,but nothing that would be making as ill as I am.I have done so much research on my own and because my symptoms are so unusual I just keep on going back to covid being part of it.At first I thought Myasthenia Gravis was involved because of the slow talking,speaking and chewing,but my MG test came back negative.I did see that some long covid clinics are trying mestinon which is used to help MG for long covid symptoms though.

@j77
How very frustrating and scary for you. MG was the first thing that came to my mind when you said it wasn't ALS. 6-12% of people with MG test negative. Could you be one of them?

I thought I had ALS 9 years (I was 56) ago when I was suddenly aspirating everything I ate. Very scary! I couldn't control the food in my mouth and it would slip down my throat before I was ready and led to violent coughing fits. I lost 25 pounds in a month from not eating since I had aspirated 50 times in 3 weeks. That sent me into afib. You can get pneumonia from aspirating too. Food also gets stuck in my throat sometimes and it's all based on chewing fatiguing my muscles. If I try to eat salad or other foods that strain chewing muscles, I'm really going to have a bad couple weeks coming up from chewing/swallowing muscle fatigue. I was tested for MG and didn't have it.

My neurologists also ruled out MS and ALS. It was determined the swallowing issues was related to a rare hereditary neuropathy I have that falls under the CMT umbrella, but less serious. At times, I also get muscle weakness in my thighs, arms and neck, but not to the severity you have it. I have had major issues with muscle twitching since my 30s or earlier. Issues with numbness since my teens. Also pain issues. So I believed that the swallowing was in fact just a new issue with the same neuro condition. I recently had to drive for hours and the next day I could hardly lift my arms from muscle fatigue. It's a pattern. My son inherited the condition too and says if he lifts something heavy one day, his muscles are very weak the next day or two. He doesn't have the swallowing issues though, but that hit me later in life.

Bottom line, the neurologist that did my testing suggested mestinon a year or so later when suddenly I was even aspirating liquids. It makes perfect sense since when I read about MG, it sounds like my issues, just from another cause. Worth a try for you especially since you'll be treating the symptoms regardless of the cause. I didn't try it only because I never seem to do well with meds and have extreme adverse reactions so I have a fear of trying new meds. I also know a lot of people get severe diarrhea from mestinon and I felt like I'd rather deal with my swallowing issues. Maybe you'll do well with mestinon. I've learned what not to eat which is most things. Makes it hard to eat a healthy diet. I also keep my head tipped forward to help keep me from aspirating. Mindful eating. I still have the same issues 9 years later, but still at about the same level, gets worse at times, but then goes back to the level I started with 9 years ago. It has never improved from 9 years ago. My legs have massive twitching going on as I write. I'm used to it. At times, my toes act like a player piano.

If your symptoms all started with COVID, I would not be surprised since I've heard people having every possible crazy reaction to that. Seek out another neurologist if you're not happy with the one you have. A neuromuscular specialist would be ideal. Just know there are other causes to all your symptoms than ALS so keep the hope that a solution is out there for you. And if it was caused by COVID, maybe it will go away altogether one day. Prayers for you.

Thankyou so much for responding!You give me hope.My neurologist I just met with ordered genetic testing.I am just waiting to hear back.I am not crazy about my current neurologist so I made an appointment with a new one.I did meet with an infectious disease doctor that ran a test on me for Myasthenia Gravis and an antibody came back borderline,but he told me that labcorp ran more testing and it was nothing.I am still going to mention it to my new neurologist.I think it is very possible that I have a seronegative autoimmune disease that is not showing up in the bloodwork.We have alot of Lupus on both sides of the Family.It took the doctors 20 years to diagnose my mother because her tests came back negative.At the beginning when I could not swallow I lost so much weight.I am 5'11 and was only a little over 100 pounds.My primary was smart enough to put me on steroids which gave me the ability to eat solid food.No other doctor would help.I cough all the time and especially on food.It is the muscles in the throat that are not working properly.They have run tests showing that everything is o.k.,but it is not.I have tried to think of what brought this on.All I can think of is that my body was so worn down from the years of anemia and working in Healthcare during the pandemic.It was basically just me and one other person for years in the office because our nurses worked remote.My body was probably in constant fight or flight and a combination of covid and the iron infusion did me in.My first initial reaction before all my symptoms set in were 5 days after my infusion and I had been in the sun and heat the day before and day of.So I am sure the heat really set it off too.I knew there was something wrong right away because my whole body was being atracked.The scary thing is that doctors were not finding much at all and did not know what was causing my symptoms.I believe covid might hide from conventional tests.Now I am left with the aftermath which is probably several autoimmune diseases.I do feel like I need to try to get into NIH where they can just try things.My case might be too complicated for the specialists I have seen.

With my Sister, her diagnosis of ALS, began to appear as something similar to a stroke: slurred speech, weakness in right arm and difficulty walking. After her first symptoms, it developed quite rapidly and she only lived for about 16 months. If you were told that you have ALS after over two years of symptoms, I would question it.

Thankyou so much for responding!I am sorry to hear about your sister.I have something extremely unusual.I think it is some kind of muscular disease,but the neurologists just can't figure it out.My situation is hard be ause I had the low iron for years which can bring on certain diseases.Than the reaction to the iron infusion/Possibly covid and I did have two Pfizer vaccines.There are so many things that could have caused this.I am just trying to find someone who has seen something similar to what I have.Thanks Again for responding.

Do you take women's iron supplemented multi vitamin about twice a week, even if you are a male? Could help, but it has been said that taking a daily multi-vitamin every day actually shows up as a shorter life span than those that don't take them at all.

I will start taking the vitamin you suggested.Thankyou so much for suggesting it.My one neurologist thought I had a metabolic muscular disease.I just got tested for Cushings Disease,but my ACH1 and Cortisol came back extremely low.I have a mystery disease.