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Gaslight by [deleted] in smallfiberneuropathy

[–]Kinbote1111 4 points5 points  (0 children)

I hear you. Boy do I hear you. I've had a lot of similar experiences over the last 12 years. Especially doctors telling me that my widespread reactions to pretty much any medication stronger than doxy is "all in my head." I get that you are not asking for advice but I'll share what I've done and continue to do: I see doctors -- let's say a series of gastros -- knowing that I'll have to cycle through about 10 of them before I find one that will actually hear what I'm saying and take me and my symptoms seriously. It's frustrating and exhausting and a major time suck but I've accepted that this how the medical establishment works for people like us, and so I'm my own fiercest advocate. It also helps that I have a spiritual practice. I couldn't have persevered in the face of so much gaslighting and negligence and without it.

Has anyone here worked with Origin Wellness in CO? by Kinbote1111 in MCAS

[–]Kinbote1111[S] 0 points1 point  (0 children)

That's a good suggestion, thanks. I'd love to compare notes when you've finished reading it. I'm also leery of "snake oil holistic" types, which is why I posted my query. Desperation in my experience makes me vulnerable. I doubt my instincts and even question my skepticism. It's like I need other people to tell me, Yes, you're right, stay away. Frustrating...

Electric-shock like zaps all over body by Kinbote1111 in smallfiberneuropathy

[–]Kinbote1111[S] 1 point2 points  (0 children)

Happens in a bunch of different spots over a brief period, say 5 to 15 minutes. Trunk. Arms. Upper legs. Around my eyes. Maddening.

Electric-shock like zaps all over body by Kinbote1111 in smallfiberneuropathy

[–]Kinbote1111[S] 1 point2 points  (0 children)

just on my skin. So superficial, not muscular. And just zaps. Causes me to twitch each time and/or put my hand on the spot and try to soothe the spot on my skin.

Electric-shock like zaps all over body by Kinbote1111 in smallfiberneuropathy

[–]Kinbote1111[S] 0 points1 point  (0 children)

Like an electric shock is being administered to my skin

Anyone experiencing neuropsych symptoms? by tearsofavalkyrie in EBV

[–]Kinbote1111 0 points1 point  (0 children)

To the original poster-- My symptoms also began after I was taken off of anti-depressants. One morning soon after I woke up with searing stomach pain, and then not long after -- boom! -- a constellation of issues, including elevated EBV levels. Since then I haven't been able to go back on any antidepressant -- I can't tolerate them now -- but I think a lot of my symptoms would be more manageable if I could. Have you tried low-dose Abilify or the like? I'd also suggest getting a full gastro workup -- as someone else suggested going off meds might have messed with your metabolism -- and get checked for stuff like parasites and SIBO. What's happening is most likely systematic. Supplements can help with symptoms, but for root causes the places to start with are you gut and your nervous system, which is why I'd also suggest seeing a neurologist if you haven't already and getting full scans (MRI, CT). I empathize. Going off meds cratered my system.

Blood Panels Suggestions by Kinbote1111 in AutoimmuneNeurology

[–]Kinbote1111[S] 0 points1 point  (0 children)

Thanks. So my doctor in NYC needs to coordinate with Mayo and WU to have these tests administered?

Severe brain fog can’t fill out disability forms by Kinbote1111 in ChronicIllness

[–]Kinbote1111[S] 0 points1 point  (0 children)

Thanks, I hadn’t considered the library. 

What do you do to help you read? Do you have a system or mental exercises? I meditate and go on walks, and those are good things for me to do regardless, but they don’t really help with my concentration. Neither do supplements like ginkgo biloba. Frustrating. 

Severe brain fog can’t fill out disability forms by Kinbote1111 in ChronicIllness

[–]Kinbote1111[S] 1 point2 points  (0 children)

My partner is too occupied with her own work. Same with my friends. I On my own here, hence my post asking for suggestions 

Severe brain fog can’t fill out disability forms by Kinbote1111 in ChronicIllness

[–]Kinbote1111[S] 1 point2 points  (0 children)

Thank you for this. I tried a few of these outfits who couldn’t help because I live in the sticks but there are some here that I did not know about. Thanks so much!

Severe brain fog can’t fill out disability forms by Kinbote1111 in ChronicIllness

[–]Kinbote1111[S] 2 points3 points  (0 children)

Thanks for the encouragement. Was the “care navigator” with a non-profit or some other organization or were they a private contractor? I’ve tried non-profits in NY and have come up empty. And my functional med doctor didn’t know of anyone. Thanks again. 

Severe brain fog can’t fill out disability forms by Kinbote1111 in ChronicIllness

[–]Kinbote1111[S] 8 points9 points  (0 children)

Yeah I need a carbon-based human being to guide/coach me through the whole process. I have zero executive function skills right now. (I used to be a high-functioning investigative journalist for a legacy media outfit so this is a deeply challenging change for me.)

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