First off, I want to say just how appreciative I am for whoever came up with this website and all the supporters who are here answering questions for all of us newly diagnosed and scared to DEATH of this condition.
With that out of the way, I'm a 30yo male, my health started to slowly degrade in my early 20's, losing energy, losing motivation, losing sleep and appetite. I've gone to literally 40+ doctors in the past 8 years who never guess at WD, and even offended my by eluding that I'm just crazy.
Well, 8 years later and FINALLY a really good doctor who was willing to do more than just the regular blood work, and WD is surfaced. I'm sitting here ANGRY at myself because I suspected WD several years back but never followed up on how to get it really tested. I'm angry at myself because a few years ago when no neurological symptoms set in, and I could have had a chance at removing the Copper without the threat of any permanent damage.
Now as I'm going through the motions of finishing my 24h urine and liver biopsy, these past 2 weeks my body/brain manifested things that scare me like crazy!
I can't walk in a strait line without losing balance, I'm all clumsy dragging my feat, and things drop out of my hands because I'm somehow not gripping them hard enough and I'm constantly exhausted to the point I can barely get up. Also trouble with concentrating!
So my main question here I guess, is since these more extreme symptoms started manifesting just in the past month, and assuming I start treatment in the next few weeks, is there a REALISTIC chance that I'm still in that time window where any neuro damage is 100% reversed? I know I should also be worried about the liver, but I know my body really well and even the tests are pointing to the liver sparing itself from severe damage by release that much more potent "bursts" of copper that end up in the brain. My liver will heal, but I'm really worried about permanent neuro damage!!!
Does anyone know how long these manifestations have to go one to be deemed as "for the rest of my life" even at a minimal degree?
Second question has to do with diagnosing via Keider Fleicher ring. I went to an Ophthalmologist today who not only bairly knew what a keiser fleisher ring was, but his nurse completely dialated my pupils before he came into the room and did the slit lamp test, so when he looked at my eyes he said he didn't see any ring..??
I'm like "hello!!! if you dilate my pupils to the point that all you see is one giant black pupil, how in the WORLD can you even see any part of the iris/cornea to look for a copper ring??" Anyone who's done the Keiser Fliesher exam, did the eye doc dilate your pupils or no? I'm thinking this eye doc gave me a false-negative on the Keiser Fleisher test.
So those are my two questions... Permanent Brain Neuro damage, and to dilate or not dilate the pupil. THANKS!!!!!!!!!!!!!!!!