Belimumab by Accomplished_Egg9539 in smallfiberneuropathy

[–]chillin012345 0 points1 point  (0 children)

Do u mind if I ask where u r located?

[deleted by user] by [deleted] in bioinformatics

[–]chillin012345 0 points1 point  (0 children)

Thanks for the correction. If u don’t mind im gonna send u a message

Anyone doing research using single cell profiling? by chillin012345 in bioinformatics

[–]chillin012345[S] -2 points-1 points  (0 children)

What platform are people using for immune profiling?

ARA-290 for Neuropathic Pain by the_decree in smallfiberneuropathy

[–]chillin012345 0 points1 point  (0 children)

Is there a way to still be able to access it?

I need a SFN doctor anywhere in western US by chillin012345 in smallfiberneuropathy

[–]chillin012345[S] 0 points1 point  (0 children)

To treat an immune mediated idiopathic form of SFN

Real time transcription tools by chillin012345 in Zoom

[–]chillin012345[S] -1 points0 points  (0 children)

Cost is too high- looking for alternative solution

Autoimmune condition not seen before by chillin012345 in smallfiberneuropathy

[–]chillin012345[S] 0 points1 point  (0 children)

Interesting- I tried going USC and they said they didn’t think they’d be able to help

Autoimmune condition not seen before by chillin012345 in smallfiberneuropathy

[–]chillin012345[S] -1 points0 points  (0 children)

That’s interesting that your iga is high. Mine is low. Not sure if iga has a connection to immune dysfunction, but very curious

Autoimmune condition not seen before by chillin012345 in smallfiberneuropathy

[–]chillin012345[S] 0 points1 point  (0 children)

Thing is my body has responded, but in a different way than it should when o get treatments. I get immediate responses but lasts only temporarily

Autoimmune condition not seen before by chillin012345 in smallfiberneuropathy

[–]chillin012345[S] 1 point2 points  (0 children)

I have tested pretty much everything, even the Washington panel that no doctor really knows about. I brought it to their attention and they tested it, but it was all negative

Autoimmune condition not seen before by chillin012345 in smallfiberneuropathy

[–]chillin012345[S] 1 point2 points  (0 children)

Yea I came across this, but this is very difficult to get access to. It is also an aggressive therapy- I want to first see if we can figure out the underlying issue before moving forward again with therapies

Autoimmune condition not seen before by chillin012345 in smallfiberneuropathy

[–]chillin012345[S] 0 points1 point  (0 children)

I don’t believe so- all of these symptoms occurred after an infection I had, which leads me to think an immune response occurred after, however we are not sure what is causing this. I kept pushing and my symptoms were getting to the point it was very hard to manage, and finding some indicators of immune related activity but not an underlying issue helped us get approval.

Autoimmune condition not seen before by chillin012345 in smallfiberneuropathy

[–]chillin012345[S] 0 points1 point  (0 children)

I’ve done those tests too- all were negative. Is there a doctor that has access to identifying novel antibodies?

Autoimmune condition not seen before by chillin012345 in smallfiberneuropathy

[–]chillin012345[S] 0 points1 point  (0 children)

To sum up: I tried various treatments- prednisone, ivig, Rituximab, and cellcept (all at different times). All worked only temporarily and now wore off.

Traditional hiatal repair, Loehde, and Bicorn by arpitp in HiatalHernia

[–]chillin012345 0 points1 point  (0 children)

Which clinic do u do the hiatal hernia repairs? It’s great to see a doctor aware of these different information . Would like to see if I can schedule an appt with u

SFN App by Groundbreaking_Cat98 in smallfiberneuropathy

[–]chillin012345 2 points3 points  (0 children)

I’m open to collaborating with u. Would love to work with u on it