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Kady1010

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I would like any knowledge on what criteria I may be missing for my doctors to give me a diagnosis if in fact it is ALS. My thenar and feet muscles have atrophy. Two muscle biopsies show fiber type grouping and chronic denervation with reinnervation, positive Babinski, brisk reflex, nerve biopsy showing axonal neuropathy. I have had 4 EMG's and the last one was the only abnormal one. It was the only EMG where they warmed by body temp to normal first. The doctor who did the EMG said " I am only diagnosing you with distal axonal neuropathy right now". I was told by one neuro a few years ago that I had discrete damage to my motor neurons. I am tired of not knowing but suspecting what is wrong. Thank you!!
 
You're "tired of not knowing" after several doctors and FOUR! emgs have resulted in no ALS.

Clearly, you don't trust the medical people. You're second-guessing them. Now you're asking non-medical people what it will take to get the diagnosis that you think you should have.

I sympathize, I really do. I wish I could tell my doctors something that would make them see the truth. So, this is what I propose. This is how you can show your doctors that you have ALS.

First, go to medical school, then take a 3-5 year internship in neurology, pass the board exams, take tests at home every month after dinner for the rest of your life, and recertify at a lengthy--several days--examination once every few years. After several more years of practice, you can begin to have some credibility--some, not a lot--with your doctors.

As it is, I think you should either get new doctors that you will trust--although I doubt you will believe any of them--or you can accept that they are the experts and you need to believe them.I really didn't want to say it this way, but it's the God's honest truth.
 
If you have no functional weakness, nor acute denervation, you don't have ALS. Whoever did 2 muscle bx, though, don't go back there.

If you are missing a definitive dx, I would try MCW, UC, UIC or Northwestern.
 
Thank you, at least your reply was kind and compassionate. I do have terrible weakness. I am being tested currently for mitochondrial disease also. I believe I have all the criteria to finally have a diagnosis and I think the many docs I have seen are waiting to see how I progress. This has been going on for four years and I was not approved for disability without a diagnosis. I have been asking the doctors if it is ALS for almost 3 years since my first biopsy. I did not have visual atrophy then and I think they did not believe me so I started video taping my fasiculations and pics of progressive atrophy. Now that I have an abnormal EMG, I have a partial diagnosis of axonal neuropathy and I sure hope it is enough when I have my SSDI hearing. I had to quit my job 2 years ago and have no income. I thank you for the reply and I guess what I was looking for was maybe another test result that is used to diagnose ALS since I am puzzled why I am still undiagnosed. The other reply that someone posted made me want to leave this group. The reason I do not trust the docs is because I became ill right after taking statins and my doc did not recognize any clear side effects when I went in three times complaining. The docs I see do not even recognize that statins can cause ALS like syndrome or for that matter most any adverse effect, it's weird. Anyway thanks again, I am living a nightmare and I appreciate your help.
 
Maybe I will be back in this group if I wind up with ALS.
 
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I would suggest your seeing a neuromuscular specialist at one of the places Laurie suggested. I know how hard it is waiting for any diagnosis. I know how it feels to not have closure. I'm sorry you've been through so much but I would stick with a specialist who can give you a diagnosis of something if you are disabled. Being three years out or more from your first symptom certainly points away from ALS but there are so many other things, we cannot advise you what your doctors should be looking for.
 
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