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ALS starting in the trunk of the body

Neuropathy | Last Active: Apr 17 4:20pm | Replies (8)

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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?

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Replies to "Hello @j77, It's good to ask questions when you are struggling to find a diagnosis and..."

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.