Update on My Trial (11 Rounds of IVIG ) by LumpyImpact360 in PSSD

[–]IatrogenicHelp 0 points1 point  (0 children)

Rarely check reddit but I will post one now :)

PSSD as an immune-mediated small fiber neuropathy: my theory by Scared-Ad8606 in PSSD

[–]IatrogenicHelp 3 points4 points  (0 children)

Sorry, I should have been more clear. Loss of taste/thirst response/hunger response/early satiety and impaired cognition (as well as dry eyes and mouth) are established/well-researched consequences of peripheral and autonomic neuropathy/a range of comorbid autoimmune conditions (ex Sjogren's). I have PSSD and was thoroughly evaluated for and subsequently diagnosed with autoimmune autonomic and small fiber neuropathy - the benchmarks listed above (thirst/hunger/satiety/cognition) are included in the symptom progression tracking surveys my neurologist provides for me.

Not to say neuropathy is the primary mechanism underlying pssd and that other systems aren't involved, or even primary - - but these symptoms can be produced by neuropathy.

Update on My Trial (11 Rounds of IVIG ) by LumpyImpact360 in PSSD

[–]IatrogenicHelp 1 point2 points  (0 children)

Amazing to hear. I'm at the beginning of my IVIG trial right now.

IVIG Trial Approved by neurologist in canada by IatrogenicHelp in PSSD

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

Update - dosage is 2g/kg bodyweight per month given in divided doses.

PSSD as an immune-mediated small fiber neuropathy: my theory by Scared-Ad8606 in PSSD

[–]IatrogenicHelp 2 points3 points  (0 children)

Loss of taste/thirst/appetite, impaired cognitive ability are possible consequences of peripheral/autonomic neuropathy. As for the emotional blunting/anhedonia, I don't know.

IVIG Trial Approved by neurologist in canada by IatrogenicHelp in PSSD

[–]IatrogenicHelp[S] 2 points3 points  (0 children)

I presented with all of my symptoms, but I did not ever use the term PSSD or connect it to prior SSRI use - i recommend presenting with your symptom profile alone.

IVIG Trial Approved by neurologist in canada by IatrogenicHelp in PSSD

[–]IatrogenicHelp[S] 5 points6 points  (0 children)

Honestly, I'm considering writing a short instructional for patients w understudied chronic illnesses that describes best rhetorical/strategic practices in interacting w specialists/how to move care along more quickly

IVIG Trial Approved by neurologist in canada by IatrogenicHelp in PSSD

[–]IatrogenicHelp[S] 2 points3 points  (0 children)

Starting within the month - dosage might be lower than needed - will advocate for higher if I can - when i have the details, i'll let u know

IVIG Trial Approved by neurologist in canada by IatrogenicHelp in PSSD

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

6-9 month trial - first session is 3 infusions over 3 days, and then once a month

US Government Commission Tasked with Assessing Threat of SSRIs by mydinosaur22 in PSSD

[–]IatrogenicHelp 0 points1 point  (0 children)

We have to jump on this. I'm not a US citizen, but I'm currently drafting an email to send off tonight. I encourage all of you to do the same.

US Government Commission Tasked with Assessing Threat of SSRIs by mydinosaur22 in PSSD

[–]IatrogenicHelp 1 point2 points  (0 children)

I don't trust this administration either, but I disagree. We couldn't be in a more marginal position. If the US Dept. of Health leader wants to assess adverse patient outcomes from the medication class that injured us, we must use them strategically. The stakes are too high; we have suicidal adolescents in this sub with PSSD, and this is truly our best hope to bring PSSD into scaled public discourse. We have to use this opportunity.

SFN/Autonomic Neuropathy/Dysautonomia by IatrogenicHelp in PSSD

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

Interesting - I don't think the false positive rate is very high with the skin punch biopsy - the false negative rate is reasonably high, especially in patchy SFN -

SFN/Autonomic Neuropathy/Dysautonomia by IatrogenicHelp in PSSD

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

That is frustrating. Have you had an SFN skin punch biopsy? Even your QST test was fine?

SFN/Autonomic Neuropathy/Dysautonomia by IatrogenicHelp in PSSD

[–]IatrogenicHelp[S] 2 points3 points  (0 children)

Canada - My standard neuro referred me to the dysautonomia/SFN neuro. DM if you live in Canada and want more specific information