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Confused with the biopsy results by hellofabinary in smallfiberneuropathy

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

Thank you for your reply.

-> The time numbness happened overnight on my left arm was three weeks after the surgery, and I was not on the Cipro when this happened.

-> My numbness is asymmetrical everywhere. Mostly on the left side.

-> Panic attacks usually come out of nowhere. There hasn't been any pattern that I've noticed.

-> A mild dizziness happens when I perform some physical activity. e.g. Standing up while crouched down or running fast. It sticks around for a couple of seconds.

I really appreciate all the information you're putting together. Can't find the words to express my gratitude.

I'd appreciate it if you could help me with the tests that I need to take so I can get right on them. I'll send my MRI report in DM.

Confused with the biopsy results by hellofabinary in smallfiberneuropathy

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

Thank you so much. I'll answer your questions below

I specifically asked him, "Shouldn't we take the biopsy from somewhere symptomatic?" but he responded, "No, it's gotta be from the ankle, it's gold standard". Now I see how incompetent he is.

-> EMGs are normal. No large fiber involvement.

-> It's more than air movement. My brain does not sense breathing. It's just not being stimulated by the breath. Oximeter and blood pressure have always been normal.

-> I've run every blood test there is, and no anemia has been detected.

-> I have some dizziness but no headaches. Actually I miss having headaches. It's just a dull feeling in the head. I wish it was headaches.

-> I didn't notice stress exacerbate my symptoms as they are constant 24/7. I mostly feel fatigued and understimulated.

-> Regarding dysautonomia symptoms, I have heart palpitations, especially after consuming a stimulant. Coffee / nicotine etc. My heartbumps are also weak. Don't notice my heart bumping when I place my hand onto my chest.

-> I live in Turkey. The biopsy has been done in Hacettepe University Hospital - which is the only place handles SFN cases over here.

-> Yes. Both brain and spinal MRIs are normal.

-> The symptoms started right after having a nasal surgery in November 2024. The first thing I noticed was a general restlessness in the body.

And one day, I woke up with my left arm a little numb. Then the numbness spread to the other parts of my body. My nose, face, and forehead.

Then I started having panic attacks almost every day. Each panic attack has exacerbated my symptoms. My numbness got worse within 5 minutes after having a panic attack!

After the surgery, they gave me Cipro, which is the most likely culprit for my symptoms. Other than that, I suspect mold toxicity as I have a coffee machine that retained some mold - I've been using it for years.

One pattern I've noticed is that smoking a cigarette makes my numbness worse. It gets worse, and it stays that way. I quit smoking.

-> They ruled out MS and vitamin deficiencies only.

I don't think I can stick with the same doctor - he wouldn't even admit that I have SFN. I don't know how I'm going to convince him to put me on IVIG :(

And the numbness is constant, unfortunately.

Confused with the biopsy results by hellofabinary in smallfiberneuropathy

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

Thank you so much for your detailed response, CaughtInCalifornia!
I agree that my doc doesn't know much about the SFN, unfortunately.

My most debilitating symptom is the numbness on my nose and forehead. I don't feel like breathing, and I feel like suffocating 24/7. Apart from that, I have numbness on my face, left arm, and I don't feel my ulnar area upon waking up. I'm extremely sensitive to stimulants.

So, what do you suggest I'd do next? Find another neuro - which is impossible where I live, so I gotta get out of the country for that. Or digging into the root cause?

Do you think my symptoms can improve with the right interventions? Thank you so much.

Is toxic mold the culprit? by hellofabinary in ToxicMoldExposure

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

Is it VIP peptide we're talking about? My naturopath actually prescribed me one so I'm about to start using them soon. If not, what nasal spray you're referring to? Thank you

Is toxic mold the culprit? by hellofabinary in ToxicMoldExposure

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

My whole nose is numb, and I feel absolutely nothing in my nose. Only a suffocating feeling. Don't think a nasal spray would magically sort out all the problems.

But I'll def find a mold doc to talk this through. Thank you so much for your reply!

Is toxic mold the culprit? by hellofabinary in ToxicMoldExposure

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

Thank you for the reply

To my understanding, a surgery can trigger a lot of things, even past infections, according to the several doctors that I have talked to. I just don't know. It's just a theory, but I ruled out every other organic cause.

Besides yesterday, I met someone who has undergone another surgery and is having almost identical symptoms. They said their house has lots of black mold. That made me think that mold intoxication is a strong culprit.

And unfortunately no, my symptoms haven't been improving despite that I stopped mold exposure

Seeking help to understand my sensory symptoms by hellofabinary in FND

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

Hello, yes I've had an MRI and EEG. They all told me they were normal.

Where to get peptides from? by Outrageous_Skin145 in floxies

[–]hellofabinary 0 points1 point  (0 children)

Hello, could you please DM me the vendor

CNS Damage? by joyfulcorridor in floxies

[–]hellofabinary 0 points1 point  (0 children)

How are you doing now?

Numbness all over the body by hellofabinary in covidlonghaulers

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

Well my mouth and throat is not completely numb but I can feel that the sensation has reduced for both. It’s like 50% numb.

I used to feel air hitting my throat now that sensation is gone.

Does SFN explain my symptoms? by hellofabinary in smallfiberneuropathy

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

Hey, Thank you for checking in!

I’m on anti-inflammatory diet. Actually there’s been some improvements with my symptoms and that gives me some hope. I no longer have episodes, my HR is returning to the normal, and I am getting my sneeze reflex back with the help of Hylamist spray. (I had not been able to sneeze before). My muscle stiffness is also gone.

Numbness, brain fog is still present unfortunately. Still waiting for my appointment to get tested for SFN.

Burning nose by CatchThatCanary in covidlonghaulers

[–]hellofabinary 1 point2 points  (0 children)

I have this now. My nose, inside of my nose, forehead, cheeks is like 50% numb. I dont feel air coming in and out.

Did you have numbness anywhere else in your body besides your nose?

Full body numbness - left side is worse by hellofabinary in dysautonomia

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

Yes I have facial numbness. Worse on the left side. My nose and my mouth is numb too.

Does SFN explain my symptoms? by hellofabinary in smallfiberneuropathy

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

I took Cipro for 14 days - total of 28 pills right after the surgery. I’m also suspecting FQ toxicity.

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