Just started losing balance and REALLY weak!

Hi Everyone!

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!!!!!!!!!!!!!!!!

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16 replies. Join the discussion

well firstly have to say Hi and welcome to the group Ronen :)

My daughter 15yo has WD not me and was diagnosed November 2007 -- dont be angry with yourself that you didnt persist -- how were YOU to know.. just be happy that it is finally diagnosed and now get on the road to recovery -- move forward -- no use looking back :)

Having neuro signs -- I hope they put you on trientine, not penecillamine as that can make neuro get worse and stay permanently..

Remember for 6 weeks, you will feel how you are but then you start progressing to BETTER. There are a few that have started the same as you and are fine today so just get started on those tablets :)

With the KF ring, my daughter had some liquid put in her eye, then she had to wait and they checked her eyes under the slit lamp and thats when they saw it.....

Here is a link another site with lots of information
http://www.wilsonsdisease.org/

Good luck and keep us posted

Rose
xx

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Hi Roen,

I had neurological symptoms similar to yours. It took one full year on cuprimine for them to revers. Once you are decoppered, you will be as good as new. I don't have any experience with trientine, but cuprimine has kept me alive, normal and active for over 35 years. Don't worry. You will be okay. Just get your doctor to start treatment and then stick with it.

Good luck and stay optimistic.

Linda

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Hi Ronen,
I am also 30 and have the exact same story as you.
When I was checked for KF rings they did not ditate my eyes. I am sure this is the norm because mine was preformed at the University of Michigan WD clinic. Highly recomend seeing Dr. Askari or have you DR contact him if they don't know much about WD. You can find their info on wilsondisease.org
As for neuro symptoms I was starting to move real slow , lose balance, and have tremors in my hands and arm. since I started syprine about 2 months ago my walking has sped up some not a turtle any more. The balance and tremors are still there. Dr. Askari said it would take about 6 month to a year to see major improvements.

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Hi Ronen,

For the neuro sympton it should improve if you keep up your medication at the doseage that doctor advise you. It will not happen over night or weeks or even months. I have just about every symptons you have and more when I was diagnosed with WD. Slowly, you will notice you are improving. The key is to continue the medications. I was on cuprimine ever since I was diagnosed. It's only recently that I am changing to other option of treatments. When you are on cuprimine, the symptons might get worst before it actually get better. I was hospitalized for 1 week because the symptons got worst.

As far as the KF rings goes you can pretty much see it yourself if you have it. I had it. In my left eyes it was very visible. It looks like dirts that's floating in your own eye that you cant get rid off. I still have it but I had to literately look for it now because most of the copper has been remove from my system. I think the eye doctor when I went to have them check out the rings they did put the eye drop on me. Regular doctor such as my neurologist and primary care prividor even my gyn didnt used the eye drop and they see it too.

Hope this help. Best wishes.

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It's different for everybody. It's hard for anyone else to say you'll get 100% reversal of Neuro symptoms. Only time will tell... I would say I had about an 80% reversal... the rest you just learn to live with, my b/f doesn't have WIlson's but is clumsier and has worse motor co-ordination than I do. That helps! :P

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lol hahahaha makes you feel much better about yourself coopa!! great to know!
hugs~ all the best!

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Hi Ronan and welcome-
I think you'll find that most of your neuro symptoms will eventually subside with treatment though you may have some residual symptoms that could persist. I agree that trientine (syprine) is the best way to go especially for initial decoppering--and of course, you must comply with taking it always on an empty stomach (2 hours after or 1 hour before eating).

My own KF rings were noticed by one opthalmologist in Montreal and yet not recognized by another opthalmologist in a famous teaching hospital in Boston so don't let that worry you. The important thing is you know what you have and you're finally receiving treatment for wd.

In my own case, my wd manifested itself with severe balance problems--I was falling a lot and even had incontinence from wd and happily, all these neurological symptoms were completely reversed with trientine so I hope you do get on it but whatever you take, have faith that you will get better.
Esther

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Thanks a lot Esther! That re-assurance meant a lot. Since they didn't see my KF rings, the doc wants to move forward with a Liver Biopsy next week to diagnose.

I'm not too keen on a 1/2 Inch needle poking me in my liver, but if it means getting confirmation I don't care at this point.

Doesn't surprise me that a doc in Montreal found the KF rings and someone in Boston didn't. Aside from Montreal being a completely stunning city, F-Canadian Doctors are phenomenal! :)

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Glad I can help. Yes, the opthalmologist at Royal Victoria Hospital was wonderful--unfortunately, however, the lab did not do the right tests (they used the wrong colored tube top) and I was not diagnosed until I returned to Boston a couple years later when I mentioned to the Boston opthalmologist that I had kf rings but told him I didn't have wd. He, then, instructed me to have the blood work done again which I did and it did show that I had wilson's--confirmed by second and a third MD opinion. I was asymptomatic at that time, thankfully, and only became symptomatic when I became erratic about taking my medication for several months. So that's my story.

I hope you get diagnosed quickly. The blood test and 24 hour urine should be sufficient to diagnose you without the necessity of a liver biopsy. Good luck and keep us posted.
Esther

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Hi Ronen, please let us know how you are doing. I´m asking because I´m getting the same symptoms that you have. And there is atleast 3 weeks to go until we get the answers from liver biopsy. I feel like the timewindow is slipping away. I quess you know about that feeling.

so let us know how you are doing? are you on treatment already?

Margus
Estonia

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Hello;
I had my eyes examined Friday and my eye doctor found KF rings in both of my eyes. I have spent a lot of time on the internet this weekend seeking information on Wilson's Disease and I must admit I found a lot of it scary. I am trying to get in to see my doctor this week. A lot of what I read explains a lot of symptoms that I have that no one has been able to explain.

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Hi Ronen
Hope all is well for you... I just wanna say to you i was diagnosed at 8 yrs old, i am now 43. i've been probed and poked all my life pretty much lol. as for your questions i have th neurological effects of WD due to the meds i was on when we found out i have WD. It was cuppermine, don't take it ok. Get on syprine or galzin. As far as KF rings go my oldest brother didn't have them till the end. They r always checking me for them, but never diolate my eyes.
Denise

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Hello All,
My son was not having any of the norm W/D symptoms when he was dx at the age of 16. We thought it was mono at first. His regular pedi dr said his platlet count would not increase so we were sent to see an oncolgist. From there we found out that is liver was not functioning correctly. In short due to my sleepless nights researching on the internet I came across w/d and showed this to his doctor. The liver biopsy was sent to the Mayo clinic and was confimed.
He was in his junior year of high school when we were told he could no longer play sports. He dealt with that ok. ( a little harder for us) My question when they started him on syprine 1500mg a day the symptoms started. Now 2 years later they are worse. (His tongue doesn't seem to work which makes his speech and swallowing hard and the drooling is very stringy now) Could taking the copper out too fast with the syprine caused more problems or is that the way it's done for every one. We drove to Dallas, Tx(Baylor Liver) to see a "specialist" in W/D. No doctors were we lived had ever heard of this. And the doctor there had treated one patient much older than our son. We are now searching for a new doctor that is willing to learn about the disease or at least know what it is. Any thing that has helped anyone out there whether a Doctor or medication would be wonderful news.

thanks from texas

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hi chads mom,
my sister has severe neuro wd.taking the copper out to quickly is definately the wrong thing to do as it can make it lodge in the basal glandia of the brain and can cause irreversible brain damage. when starting on a chelator you should always start with a lower dose and work your way up to a dose that is working well at taking the copper out. the only way to do this is have a dr do a 24hr urine test every couple of months until they can see that the copper is at a safe level, i hope i am making sense? i am in Australia so i don't know how far you are from Michigan but from what i have read the university of michigan hospital seems to be the best in the country for wilsons . maybe you can ring them or e-mail them to try to get some answers or to find a dr that can help you closer to home. if i have l learnt one thing from Cathryn being sick it is that you have to be very relentless when it comes to the drs and this disease, just keep pushing til you get the answers you are looking for it is your right.
i hope i have been of some help to you, my love and support goes out to you and Chad.
Don't give up, i know how hard this can be on everybody but there can be light at the end of the tunnel.
Melinda xx

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Thank you very much Melinda. This is my first time to discuss this openly and any comfort is appreciated. We are looking at tring to get him in with someone who knows and understands this disease, which as you know is a difficult thing in its self, but we are hopeful.

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Hey,
Just wanted to let you know we're originally from Fort Worth, Texas and our son was diagnosed at 16 his junior year as well. We went to Michigan for treatment, and I am concerned the copper was pulled out to fast. But, I don't accept permanent. Nothing is permanent until we pass into eternity! Anyway, hang in there and it's the best thing to talk openly about this crazy disease that effects people like 300 different ways! My prayers are with you!

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