Could this be ALS?

[jsander21]

Good afternoon. I am new to this page. I have been through a series of tests this past year to identify my muscle weakness and weight loss. My gp was actually the one that told me I was twitching and needed to see a nuerologist. (At the beginning I didnt notice any twiches, and kinda dismissed his referal)

After I finally went to the nuerologist they told me I had a type of dystonia because of rigidness and how I was holding my neck to my shoulder (which again, i didnt notice) After a ANA panel and other blood test it came back positive for sjorgens and slightly elevated Achr binding serum. Further EMG testing shows muscle weakness, however noting it was not Myasthenia Gravis.

My rheumatologist acknowledges the sjorgens but says most my symptoms do not coincide with Sjorgens. He asked me to go back to my nuerologist to repeat my Emg to see what has changed in the last 6 months. I am trying to trust the process and be patient while I wait for the next appt. My question is... is it common to has slightly elevated Achr binding serum or sjorgens with ALS? Im hoping for someone to ease my mind while I wait. Thank you for your time.

 

[jsander21]

Good evening. Anyone able to clarify my question above? Is it common/uncommon to have sjorgens and/or slightly elevated achr binding serum with ALS? I appreciate any input.

 

[lgelb]

No, those are rheumatology markers (though elevations do not necessarily mean disease) as you point out and do not relate to ALS, a motor neuron disease. You may want a second rheumatology opinion. If you could post the de-identified EMG report, we could be more helpful.

Best,
Laurie

 

[jsander21]

Thank you so much for your reply. Ive been "ping ponged" back and forth between my nuerologist and rheumatologist. I was originally sent to the nuerologist who said I had with carple tunnel in my right wrist and due to the bloodwork, I had Myasthenia Gravis. I dont have any numbness or tingling in my right wrist, but I am right handed so I guess carpel tunnel could be right. I am not in pain so opted not to do the surgery on my wrist. I made an appointment with the rheumatologist in my area, but it was a 3 month wait to get in.

I reached out to the Mayo clinic in the meantime to learn more about Myasthenia Gravis and they got me in at the beginning of January; the EMG did not indicate Myasthenia Gravis; They requested I get tested for paraneoplastic signs which all came back clean. (Yeah, no cancer)

My local nuerologist is convinced it is Myasthenia Gravis, even though the Mayo Clinic said no.

My 3 month wait rheumatologist appointment was this week, and he once again tested me with an ANA panel which showed Sjorgens. (For the 3rd time) He wants to do a lip biopsy to confirm; I dont have a dry mouth, and im not in any pain, just extreme fatigue and major stiffness; just recently my right cheek is starting to get stuck in a smile position. I dont cramp anymore unless I try and stretch; if i do stretch my muscle that Im stretching goes "haywire" (stretch the foot, toes get stuck in weird positions) My biggest worry is the tightness on the right side of my chest; my diaphram flutters... it used to only happen every now and then, but now its almost a constant thing. My rheumatologist doesnt want to treat the Sjorgens because he believes it is nuerologic.
I will await my appt. With the Mayo Clinc to repeat the EMG. I just needed a little confirmation that ALS and rheumatology dont really coincide with one another because I had seen something that said Myasthenia Gravis had been misdiagnosed as ALS or Vice Versa.

I think that the local nuerologist and rheumatologist have no idea how to handle me and just want me to go away. Hopefully the Mayo Clinic can help.

I can upload my reports if you think it would help. For right now, you have put my mind at ease while I wait. Thank you, again.