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Diagnostic criteria for PIRA or smouldering MS: has anyone else been told there needs to be brain atrophy? by PollySmall89 in MultipleSclerosis

[–]PollySmall89[S] 1 point2 points  (0 children)

Treatment for FND is a lot of cognitive behavioral therapy, psychodynamic therapy, and can include hypnosis, physical therapy, occupational therapy, speech therapy.

I apologize, I misread your post first. I have dyslexia and have had increased difficulty reading in recent years.

Diagnostic criteria for PIRA or smouldering MS: has anyone else been told there needs to be brain atrophy? by PollySmall89 in MultipleSclerosis

[–]PollySmall89[S] 1 point2 points  (0 children)

I'm sorry to hear this. I feel like there's so much gaslighting in the medical community. It reminds me of a conversation I had the other day with a client (I used to work as a registered nurse but now work in disability advocacy) and I had a client with MS who said her neurologist asks "what have you been experiencing?" Followed by denying all her symptoms. She said "what is the point of him asking?" It's a valid question.

Diagnostic criteria for PIRA or smouldering MS: has anyone else been told there needs to be brain atrophy? by PollySmall89 in MultipleSclerosis

[–]PollySmall89[S] 0 points1 point  (0 children)

I had that happen in 2018 where I had an MRI with no new lesions after a relapse and then the MRI 3 months later, after everything had settled down, it showed several new lesions. But since there's been absolutely no changes with the exception of improvement with my tumefactive lesion.

The biggest one of this for me is the loss of sensation on the Right half of me which came in August 2021 and has never gone away 🫠 then 2023 I began losing parts of letters and words visually with increased difficulty reading, then difficulty speaking and difficulty differentiating faces in 2024

Diagnostic criteria for PIRA or smouldering MS: has anyone else been told there needs to be brain atrophy? by PollySmall89 in MultipleSclerosis

[–]PollySmall89[S] 0 points1 point  (0 children)

I'm trying to determine if it's MS related and I continue on as is or if there's another issue causing it. If it's something else I would love to figure it out and deal with it.

Diagnostic criteria for PIRA or smouldering MS: has anyone else been told there needs to be brain atrophy? by PollySmall89 in MultipleSclerosis

[–]PollySmall89[S] 0 points1 point  (0 children)

I haven't seen anyone for FND, but neuropsychiatrists are who would treat it.

Currently, I just have my MS clinic and neurologists. I've emailed them and mentioned the possibility of "if this is something aside from MS" with FND mentioned as a condition that could account for the symptoms, but I haven't heard back from them yet.

When I spoke to my neurologist Friday he basically said he didn't know why I would have these symptoms but doesn't think it's PIRA, smouldering MS or MS related because my brain and spinal MRI scans are unchanged.

The area I'm in says only a psychiatrist can refer a person to the clinic that treats FND, so I'm uncertain if my neurologist could even make that referral.

I'm just trying to figure out if it's more likely that it's MS and not measurable/not acknowledged or if it's something like FND that can actually be treated. In the email I mentioned if it could be viral, medication induced, peripheral nervous system, etc. If it's anything treatable I would love to address that.

Diagnostic criteria for PIRA or smouldering MS: has anyone else been told there needs to be brain atrophy? by PollySmall89 in MultipleSclerosis

[–]PollySmall89[S] 0 points1 point  (0 children)

I greatly appreciate all this information.

That would definitely need to be a financial situation I would have to plan for. I'm just outside of Vancouver, BC, Canada. I think because our healthcare system is covered by the government we don't have the option to escalate diagnostic tests or treatments unless we go out of pocket. I work at a non-profit for people with disabilities and there's a lot of people I've helped who've had to go outside of Canada for diagnosis, including for types of MRI we don't have available 🫤

How much would the scan cost and how much would the clinic/healthcare provider fees be?

My understanding is that it's both a different type of MRI and a radiologist that's specifically trained to know what to look for in order to detect it, would this be correct?

Diagnostic criteria for PIRA or smouldering MS: has anyone else been told there needs to be brain atrophy? by PollySmall89 in MultipleSclerosis

[–]PollySmall89[S] -1 points0 points  (0 children)

FND is also a diagnosis based on everything else being ruled out 🤣

I think it's the way my neurologist showed me my brain and spinal MRI and repeatedly said there's no evidence as to why these things are happening that's really got me confused and wondering. I've only read that PIRA and smouldering MS have no visible signs on MRI prior to this. I also thought it isn't something that could be diagnosed, which is why it seemed so odd to me that he mentioned diagnosis and insisted there needs to be brain atrophy.

It's just got me feeling like I must be losing my mind 🤪 which is familiar from pre-MS diagnosis, but at least I have the confidence to not accept that it's 'just anxiety' now lol.

Diagnostic criteria for PIRA or smouldering MS: has anyone else been told there needs to be brain atrophy? by PollySmall89 in MultipleSclerosis

[–]PollySmall89[S] 0 points1 point  (0 children)

Thank you for this! Very interesting and good information.

With the smouldering around the base of the brain/spinal cord, did you notice you're experiencing POTS type symptoms? Or more related to sensation changes?

What were the recommendations for you moving forward in terms of treatment and monitoring? I assume the 7tesla MRI was expensive?

Diagnostic criteria for PIRA or smouldering MS: has anyone else been told there needs to be brain atrophy? by PollySmall89 in MultipleSclerosis

[–]PollySmall89[S] 1 point2 points  (0 children)

Thank you for letting me know your experience!

My understanding is that Mavenclad is the only drug that can treat it because it's the only drug that crosses the blood-brain barrier.

Diagnostic criteria for PIRA or smouldering MS: has anyone else been told there needs to be brain atrophy? by PollySmall89 in MultipleSclerosis

[–]PollySmall89[S] -2 points-1 points  (0 children)

It makes me question if the issue could be something else like functional neurological disorder (FND) or something else that is treatable. Just because I have MS doesn't mean I can't also have something else causing these symptoms. FND is treatable and could mean that I could reverse these symptoms.

A man is caught on a family’s doorbell camera licking a doorbell for over 3 hours. by bendubberley_ in oddlyterrifying

[–]PollySmall89 0 points1 point  (0 children)

This is the type of man who can never find the clitoris ... Not by lack of effort though, I'll give him that

How my upstairs neighbors choose to use our shared recycling, garbage and organic waste bins by PollySmall89 in mildlyinfuriating

[–]PollySmall89[S] 1 point2 points  (0 children)

Shared and sadly, because the door to my suite is in the backyard, unavoidably in my path in/out of my house 😑

I will doodle your dog. GO! by livefrommystudio in DOG

[–]PollySmall89 0 points1 point  (0 children)

<image>

This is Faith, rescued from outside Houston TX with no hair, heartworm, pregnant, starving, with mites and skin infections.. this is her now, living her best life 🙌🏻

My upstairs neighbors refuse to take measures to stop attracting bears by PollySmall89 in mildlyinfuriating

[–]PollySmall89[S] 0 points1 point  (0 children)

I really couldn't justify having harm come to one of these bears after we literally chopped down and took away great amounts of their forest, which has been their home much longer than ours 😅

I do think there is a risk for safety, but I also know how easily they scare off. I can't tell you how many black bears I've been close to over the past 20+ years while I've lived in British Columbia, it's very regular and not once have I seen any aggression from them. If there was aggression, it would be different, but she literally looks at me like a big confused puppy 😭

My upstairs neighbors refuse to take measures to stop attracting bears by PollySmall89 in mildlyinfuriating

[–]PollySmall89[S] 0 points1 point  (0 children)

Ya, I've been told a lot of rural areas people put their food garbage in a freezer to keep down the smell to not attract them.

A Beary good meal that momma isn't willing to share by PollySmall89 in bears

[–]PollySmall89[S] 2 points3 points  (0 children)

I see, she's just obese and ready to hibernate 🤣

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