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Hi to Everyone,
I have been found a low celuroplasmin for .15 and 24-hour urinary copper tests are also positive. But i have not been found with any k.f. ring. I have many nurological problems as tremors, difficulties in walking, speech, writer's cramp. Every nurologist i meet says it is wilson. Can anyone advice on this? Do I have wilson's? The treatment on wilson's is already started.
if they started treatment for wilson's...it is most definitely wilson's...you will get better...i had severe migraines, hand tremors, rages, memory loss...started meds 18 years ago...and i am fine. really. work out regularly...you would never know anything was wrong with me. just remember that it is uphill from here!
Hello,
I am feeling so much relieved after i heard this from you.
Actually I wanted to know approximately by what time it gets to feel better. It is around two years since I started to take the treatment.
well i was guinea pig number 11 on tetrathiomalybdate...though your neurological symptoms are much worse...i started feeling better within a few months...what treatment are you on?
...i was on TM for 2 months and then switched to galzin.
I am on four artamin a day plus two zinconia(for zinc). Actually I was having neurological problems from my chilldhood, but it got worse when my father expired in 2003. So we visited a doc. And he diagnosed it as WD.
i had migraines and rages from childhood...has your doctor consulted with dr. askari at the university of michigan? he is the current specialist...i was lucky to be under the care of dr.brewer who developed the zinc therapy.
I don't know if he has consulted him or not. But today only I got a mail from my doc to continue on the same medication. I was developing some other problems as lack of concentration and memory loss just before the treatment started. And they seem to have gone. But my other neurological problems were getting worse and i also developed some other neurological problems, but i guess i was informed about these problems by my doc.Now it seems to be ok, but my other neurological problems as I mentioned earlier are remained.
artamin is penicillamine...when i was about to start treatment...i did some research and penicillamine can worsen neurological symptoms(70% of the time)...that is why i decided to go experimental at the time with TM...i ended up diagnosing myself after 10 years of being dragged around to physicians...
as you have been on artamin for 2 years...you really should talk to your dr. about just going on zinc chelation. he should talk to dr. askari...i actually worried about you quite a bit yesterday...
Dear Pathik
Coppertop is right. She had option avalable where as you may not have many option of treatment available to you in india. I had D- pen for 28 years> I had not much problem with it<Though now I am on Zinc and Syprine(which is not available in India or it may be too costly for any one in india). If you can afford Syprine it is alternatative to D pen though not as effective as D- Pen in getting rid of deposited copper. TM is not available in UK it may be availble in USA but still in its research stages that is what i gather from discussion. I have not spoken to either Dr George Brewer or Fred Askari at Ann Arbor Michigan. I had writtin them emails but never had a reply. I think they are looking for patients who are recently diagonised and patient who have started treament.
I think you both are right, but I can't do anything but have faith on my doc. I just had my 24 hr. urinary copper test and the results were 948.40 microgram/24 hr. where it should be between 30-50. So I think that was the reason why my doc continued with the treatment.
Dear Pathik
which dr. u r consulting with? In India, which place u r residing? Actually in AIIMS, Delhi, few patients are under treatment for WD, some of them are on this community also (e.g. Rosepetal, she is doing very well and in fact an example or u can say a role model for not only WD Patient, but for me also). I m also frm India and cares for sm one affected of WD.
u may also contact Wilson's specialist whose address are given on wilsonsdisease.org. I m just Copy/pasting it below, u may contact Dr. Ashish Bhavdekar in Pune or Dr. Ashish in Delhi.
India
ROWIKEM
Dr. Ashish Bavdekar
Associate Consultant
Pediatric Gastroenterologist
Liver and Gastroenterology Unit
Department of Pediatrics
T.D.H. Building, Ground Floor
K.E.M. Hospital, Rasta Peth
Pune 411011
India
Phone: 91-20-4037342/5538728
Mobile: 98220 56174
Fax: 91-020-6125603
E-mail: kemhrc@vsnl.com or bavdekar@vsnl.com
Clinics for Wilson's Disease:
Mondays and Thursdays 11:00 a.m. - 1:00 p.m.
WISDOM
Dr. D. P. Pande, Ph.D.
Wilson Disease Observation and Management
Dhawalgiri 17A
Anushakti Nagar PO
Mumbai –400094
India
Voice mail/Phone: 91-22- 2559 5515 (3:00 p.m. to 4:00 p.m.) or 2557 2947 (8:00 p.m. to 9:00 p.m.)
E-mail patient support: indiawisdom@yahoo.com
E-mail research collaborations: indiawisdom@hotmail.com
Clinics for Wilson’s Disease Patients:
Monday, Wednesday and Friday: (3:00 p.m. to 5:00 p.m.)
For appointments, phone: 91-22- 24222160
Secretary, WISDOM, Dr. Aabha Nagral,
Consultant Gastroenterologist & Hepatologist
O-18, Bhavna Building 2nd floor
Veer Savarkar Road
Prabhadevi Clinic
Mumbai-400025
India
Hi Ajit,
Thanks for your concern. I am under Dr. Ashish Bavdeker, in Pune. And I am residing in Baroda(Gujrat).I I cannot go to pune very often, as I am doing job here in Baroda, but I am constantly in touch with him through emails and/or telephone. I am Under Dr. K.R.BUCH(neurologist). He suspected me of wilsons. And he had proposed for Dr. Ashish Bavdeker. I would like to know from which part of India u r?
i m basically frm Bihar, but presently residing in Panipat, Haryana, as i m posted here in my job. glad to know that u hv started with a specialist. people affected of WD are doing very well, even better than people not affected with WD ...:), and the gud thng is that u know that it is treatable. the only thng is that, u hav to take ur medicine regularly and religiously. i have seen/met people with WD, who r doing very well in their studies and jobs.
dear pathik
i am sorry to hear that u r copper is too high. You should make a list of food you take (eat) and find out the copper contents of each. Then try to avoid food which are high in copper.Are you non vegiterian? if you are avoid eating liver and kidney of any animal and also avoid sea food as these all contains lot of copper.
avoid eating peanuts or any kind of nuts( things which has hard outside and soft inside)this includes coconut too. Avoid copper utensils. you should also if possible find out copper contains of water you drink if high try having purified water if you are able to get it(not spring water or bottled water) Id you are wearing copper band or ring don't wear it as the copper goes into your body through skin too.
Thank You Mr. Kalapi, I will really follow your suggestions, and I am Vegeterian, so there is no questions as you said. Thanks for your suggestion once again. And I wanted to ask you for my knowledge, what problems you were having when u were diagnosed wilsons and in what time you were feeling all right?
Hi Ajit,
Thanks for Replying. I will really take your word and will follow my treatment seriously.
dear pathik
I had neurological sighns. I have learnt from my experience that if you have nuerological signs and your liver is not damaged much than your WD canbe treated and well kept in control with medication and diet. Evry thing depends on haw much your liver is damages. My liver is damaged about 4 cms or so. My WD was picked up early and treatment was started early so it has prevented my liver getting more damaged.. I don;t say this workds in everycase but the chances of normal life are more if your liver function test are in controlable levels.Good luck. with your diet. If you vegeterian I might mention it to you that all leafy vegetable like spinich, methi (not dried) tandalio and other have more copper than other veg. so when you eat these veg keep in mind the quantity you eat. Cabbage is fine to eat. in fruit try to eat less pears it has more copper than others . I had list of indian veg other things from my dietiton in London but i have mis laid it. If I am able to find that list I will email it to you. I know ajit also was looking for this kind. I might provisde him with it when I wiil find it Happy raksha bandhan to all of you in Indiaand all Indian abroad. bye
Dear Mr. Kalapi,
It's good to know that the patient with only neurological signs and no kidney demages can be treated early, as I only have the neurological symptoms my kidney is not demaged. Happy Rakshabandhan to u to.
Dear Pathik,
I would like to tell you that you should also avoid/try to take as less as possible mushrooms, nuts and beans(rajma, dry fruits, etc.), chocolates, coffee, asafetida(heeng), etc., as in these eatables copper content is high. I have also been advised by my Doc to take less salt for sake of my liver.
All the very best!
Richa
Dear Richa,
Thanks for Your Suggestion. I will really take your word seriously,I have read the journal posted by you named WITH WD. I have read there that u had a tremors in ur hand, I would like to know if it is treatable, means if ur tremors have reduced, I also cannot write, if it is treatable or not with time. I am lefty by birth, now I have started to try with right hand.
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