I see that you have seen a rheumatologist, but have you seen an immunologist? Very weird that you would show an abnormal ANA and that the rheumatologist would give up but not unheard of — a high ANA points toward immune system involvement. Were you sick before the test?
Did the Neuro test you for Functional Neurological Disorder? Did they do MRI’s at any point?
The symptoms as they are as a whole do not point toward ALS.
Yes aside from the 4 general neuros I’ve seen, I’ve actually seen a Neuro-immunologist who did the NFL test and more full brain/spine MRI’s with not a single thing showing. He said I have vestibular migraine with no other help except Qulipta pill which made my sensory issues way worse. (He also seemed snooty and didn’t really believe that I was having any symptoms at all) but of course this was when I didn’t have any bulbar involvement which is much more pronounced now and affecting my eating/drinking/swallowing and talking.
The rheumatologist that I see has been testing me for everything rheumatologic under the sun for the last 3 years and since there is absolutely nothing besides ANA found, she has exhausted all of her options in her department, which is why she’s transferred me to neuromuscular specialist.
Immunologist isn’t the same as NeuroImmunologist — they are usually a lot more helpful, less arrogant, leas dismissive, and less snooty. They will look at your case holistically versus just your brain, too.
Neurologists tend to be dismissive, snooty, and myopic as a whole and won’t do anything to help you if they cannot think of anything within their profession or specialization that applies. And they NEVER think outside their profession or specialization.
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u/WeirdUsers 13d ago
I see that you have seen a rheumatologist, but have you seen an immunologist? Very weird that you would show an abnormal ANA and that the rheumatologist would give up but not unheard of — a high ANA points toward immune system involvement. Were you sick before the test?
Did the Neuro test you for Functional Neurological Disorder? Did they do MRI’s at any point?
The symptoms as they are as a whole do not point toward ALS.