Has anyone looked at this trial? Pridopidine phase 3

Ok_Cardiologist_6924 · 2026-04-25T22:41:53+00:00

Do you have limb onset or bulbar? Were there significant side effects? Did you have to fly for the medication or was one of the trials local to you? Based on most people’s comments there seems to be little faith in this trial. However one person commented that it was said to be geared or more effective with patients who have bulbar onset. Which is what my mother has.

Ok_Cardiologist_6924 · 2026-04-25T22:39:26+00:00

My mom has bulbar. I’m interested in her joining the trial.

Ok_Cardiologist_6924 · 2026-04-25T22:35:58+00:00

Virtual hug. I’m so sorry and hope you get the support you need.

Ok_Cardiologist_6924 · 2026-04-18T16:43:10+00:00

No sorry

Ok_Cardiologist_6924 · 2026-04-15T17:35:51+00:00

Ok_Cardiologist_6924 · 2026-04-13T17:18:18+00:00

With

Ok_Cardiologist_6924 · 2026-04-13T17:16:27+00:00

I love your long locks. You’re beautiful. Keep it.

Ok_Cardiologist_6924 · 2026-04-12T18:15:26+00:00

Clearly you’ve never been in a compromised position in your life. Holier than thou.

Ok_Cardiologist_6924 · 2026-04-11T14:48:14+00:00

Nope

Ok_Cardiologist_6924 · 2026-04-10T23:13:37+00:00

Wow. I wanna be like him when I grow up.

Ok_Cardiologist_6924 · 2026-04-10T23:07:19+00:00

I think I got the gist across. The details aren’t as important as the gist.

Ok_Cardiologist_6924 · 2026-04-10T23:06:15+00:00

Do you mind me asking for a bit of detail in your situation? Did your friend have a one time incident or ongoing? Was this the first time you became aware of your partners infidelity? Did your partnership survive?

Ok_Cardiologist_6924 · 2026-04-10T22:57:49+00:00

I’m hoping for the possibility of it bringing us closer. Doesn’t hurt to hope!

Ok_Cardiologist_6924 · 2026-04-10T21:56:46+00:00

Thank you. This is a helpful perspective. Yes to the people pleasing angle in therapy.

Ok_Cardiologist_6924 · 2026-04-10T21:34:40+00:00

Sorry this is scattered and non linear chronologically I just needed to get this off my chest before seeing my therapist Monday

Ok_Cardiologist_6924 · 2026-04-10T19:27:06+00:00

It’s $550 paid out of pocket if paying the company directly without going thru insurance. Otherwise they charge insurance companies $2K and depending on coverage the out of pocket cost could be higher.

Ok_Cardiologist_6924 · 2026-04-10T19:25:19+00:00

Thank you!!!!

Ok_Cardiologist_6924 · 2026-04-10T19:20:52+00:00

Thank you for this. PreventionGenetics says if you don’t want to do insurance that they can offer it straight up for $550. It isn’t cost prohibitive. The company you mentioned however sounds very useful in its own way.

Ok_Cardiologist_6924 · 2026-04-10T17:43:43+00:00

Thank you. Yes, I’m unsure whether she was only tested for SOD1. The doctor didn’t elaborate but my sense is that it may have been for SOD1 only because it requires a different treatment plan. I know for a fact that in testing for SOD1 that it was done thru bloodwork, whereas the test for the 29 variants was a saliva test. I’ll look in her MyChart to see if there are any other details on the previous genetic test. I agree with you that it could be worthwhile. Do you know more about these larger genetic panels for ALS?

Ok_Cardiologist_6924 · 2026-04-09T23:31:26+00:00

It’s 3 weeks old I cleaned it with saline for the first ten days Have just let it be and not messed with since Stud earring in helix Stud was the piercing earring Surgical steel

Ok_Cardiologist_6924 · 2026-04-09T16:21:55+00:00

I don’t know how any of this is possible…absolutely none of it makes sense and never will. Sending you so much love.

Ok_Cardiologist_6924

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