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Old 12-08-2023, 02:15 PM #11
Habu Habu is offline
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Habu Habu is offline
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Quote:
Originally Posted by Selenius View Post
Since the sweat test however, my symptoms have blown out. I now have burning throughout most of my body, where before it was just hands and feet with occasional light symptoms up my legs.

I saw my general practitioner who felt that the increased symptoms meant the neuropathy was across most of my body and the sustained heat of the sweat test aggravated those nerves.


Worthwhile mentioning that I was diagnosed with postural tachycardia syndrome in 2013, which is possibly auto immune.
I really hope you see this reply, but then again I hope you've recovered and have moved on in life! However, you've most succinctly described the most bizarre experience of my life!

I am a few years older than you. I had a TBI when I fell into a wall/table in my living room 5 years ago.
Ever since, I randomly will feel like I'm going to pass out when I'm walking or going up stairs, pulse zooms to the 150s(near-syncope). Only since the fall though. I started having pins/needles and a sense of vibration in my 4th and 5th digits after the brain injury, and it all faded over time so it was forgotten mostly.

Finally did a Tilt Table test for the near-syncope last January, and when I passed out after the nitro (normal), I woke up and my entire body felt like it was vibrating so much I could almost *hear* it and felt like all of my skin was asleep/itchy... I'd sweat through my clothes. The sweat test was abnormal, but I never heard more about that.
Even after I got home, it was so "loud" I didn't sleep for another 16 hours. It was far more intense and widespread than anything before. I found what your doctor said interesting because that's what it seems like to me but my docs just shrugged.

One cardiologist believed me (he retired ha!), one was quiet and both neurologists have looked at me like that couldn't have changed that fast. Dude, know I'm sitting here crying my eyes out bc you've made me feel sane from 8000 miles and 18 months ago!

More:
I was urgently referredl to neuro, they did a skin biopsy, showed SFN and last week I started topiramate and that's that it seems. Live with it I guess?

Would love to hear more about your story, I am going to look around for your posts.

In any event, thank you for the validation. Means more than you know. Thank you!

[any typos or incoherence are the direct result of topiramate ]
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Old 12-08-2023, 03:19 PM #12
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Hi Habu,

I'm not Selenius, and I hope that you'll be hearing from Selenius soon, but I just wanted to say Welcome.

I'm not knowledgeable about TBI and I hang out mostly on the MS forum but I've had a few head wounds over the years and am aware of how severe they can be.

It might be a good idea to ask some questions about that abnormal sweat test, it seems to me--but that's just a thought.
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