So, we had our zoom meeting yesterday. It was interesting. I’m not sure how many other pre-fALS were in the meeting because it was set up so that you could not see the the other participants for confidentiality reasons. We were asked not to share information on social media sites at this time so I’m not sure what I can and cannot share 🙂 I have a my appointment next week for the pre-fALS study in Miami. It is a 2 day visit in which I undergo alot of the testing that they do for ALS, as well as tests looking for biomarkers. They would like to do a lumbar puncture (spinal tap) but I’m frightened. They get better data from that fluid than just from blood work. Not to mention that the treatment would be intrathecal (occurring within or administered into the spinal theca) so I feel that I should be comfortable with the procedure. Any thoughts or words of encouragement? I feel like I should do the spinal tabs (2-3 times a year) because it provides better information for the study, but I’m nervous. They do EMGs and other tests involving a lot of needles at each of these visits.
At my visit next week I will find out exactly what I can share on social media. You all will be the first to know. I will say that I think they are on to something promising for genetically linked ALS. Unfortunately that is only about 10% of pALS. It all centers around the protein, and is related to a lot of the articles we’ve been reading on ALS News Today.
pALS, when you go to the ALS clinic do they do the same test (EMGs, MRIs, ect.) each time or just for the diagnostic appointments? What tests do they do?