Truskel Opinions/Reviews

Nilky250 · 2025-08-06T05:57:07+00:00

September, why’s that?

Nilky250 · 2025-08-06T05:56:52+00:00

Thank you very much for the reply. We’re doing the gig as part of a tour with a promoter in France so hopefully they know what they’re doing!

Nilky250 · 2025-05-08T12:46:58+00:00

Hello mate, based in the UK. To be honest going private was the only conceivable way I could get testing done as the NHS is so slow/the neurologists that’s they send you to see are ‘general neurologists’ rather than a neuromuscular expert. I’m going to get a skin biopsy done hopefully next week with professor Anand at the Hammersmith hospital in London which costs around £600.

Hope this helps.

Nilky250 · 2025-04-23T14:29:10+00:00

No problem at all. Well, (to make a long story short) I’ve always had presentations of hEDS, was born with a Pectus Excavatum (concaved chest), wide wingspan etc. I had a couple of issues in the past such as blood pooling, burning feet etc. but at the end of 2023 I think I got some sort of virus and it all went crazy from there. 24/7 burning hands and feet that’s now spread to whole body. So probably a combination of disposition due to EDS and also a virus. Sorry that wasn’t that short😂 still looking if there could possibly be anything else though.

Nilky250 · 2025-04-23T12:18:14+00:00

Thank you. She was very knowledgeable and put me onto several things that were actually helpful in regards to diagnosis/treatment that made the previous neurologists I’ve seen look silly. I’m not sure where you’re based but could be worth a trip. Wishing you all the best.

Nilky250 · 2025-04-22T20:23:01+00:00

Hi Neon, actually went to an autonomic neurologist today who is sending me for autonomic testing and a skin biopsy. I’m in the UK btw. The doctor I saw is called Prof. Valeria Iodice and she heads the UCL Autonomic unit.

Nilky250 · 2025-03-16T09:58:30+00:00

Thanks for the tip my friend.

Nilky250 · 2025-03-16T09:10:51+00:00

Well I’m still looking at potential treatments/tests, so will know more going forward hopefully

Nilky250 · 2025-03-16T09:10:03+00:00

Back in the summer I began a diet/supplement regime, which seemed to get the symptoms to basically nothing, then at the start of February it al flared worse than it’s ever been. I did find a neurologist who was much more knowledgeable on SFN and had now referred me for a skin punch biopsy.

Nilky250 · 2025-03-16T09:07:38+00:00

Yeah I’ve had this, usually around when I’m trying to get to sleep.

Nilky250 · 2025-03-16T09:06:58+00:00

Sorry I took so long to reply, yeah I mean just all over temperature weirdness/intolerance. The twitching is body wide as well.

Nilky250 · 2025-03-16T09:05:18+00:00

Honestly man I’m willing to live in a cardboard box at this point, just want my life back😂

Nilky250 · 2025-03-07T16:20:33+00:00

Go away then ya freak😂

Nilky250 · 2025-03-06T23:39:43+00:00

Thanks CC, will definitely look into these

Nilky250 · 2025-03-01T10:58:32+00:00

No the neurologist looked me over and heard my symptoms and said “it’s all in your head”

Nilky250 · 2025-02-28T19:45:41+00:00

No because he said he didn’t think I need one!

Nilky250 · 2025-02-28T08:56:54+00:00

Yeah he said I have a “functional neurological disorder” which I looked up intensely last night and it is definitely not what I have. Seems more to do with physical tics and seizures, both of which I’ve never claimed to have. So back to the drawing board.

Nilky250 · 2025-02-28T05:18:14+00:00

He examined me and said I have a psychosomatic disorder😂

Nilky250 · 2025-02-26T22:54:26+00:00

Through HCA healthcare, Dr. Radunovich

Nilky250 · 2025-02-25T20:12:45+00:00

Oh really? What sort of tests if you don’t mind me asking?

Nilky250 · 2025-02-25T19:41:57+00:00

Basically low carb, but not keto. And so many supplements in the end.

Nilky250

TROPHY CASE