something about Liver, iron overload, chelation, diabetes and hepatitis

The chemist now mixes my desferal so I don't know how he is doing it. He has been doing it for  over 2 months as my hands and fingers lock. It is quite fustrating as I am limited with a few things.
It took me awhile to hand over the mixing of my medication. Very independent and not willinging to give control to anybody. Got to the stage where my family weren't always available to do the desferal so I spoke to the chemist.
It's good but when the mixture comes back flaky, I get worried. Over here desferal is not refridgerated anymore if it is mixed for a certain amount of days. Pharmacetacol protocol.
As for my hands and fingers, a specialist said I had camptodactyl but he has not confirmed or anything. I have physio and or that but you might as well say that I am dealing with it by myself.
The las couple of weeks have been pretty bad as now the pain in wrist, hands and fingers are getting constant.
Transfusion next week so I will be bringing this problem to their attention.

hi umair.. but my s.ferritin is really decreased it is only 600.... in the test of s.ferritin.. n liver size in 18 cm.. n sgpt 123.. now temme n u r taking about peg.onterferon i know about then but they r so expensive m trying to get them see when i will be able to get then..... thanx for advse keep informing me thanx yar .. take cares.. bye byeeeeee i wil send u my report new report then temme  me hhow it is.. c ya take cares bye

Hey Ayesha,

Where do you go for transfusion and which doctor are you consulting? As you can see i am from Karachi too,we go to Aga Khan for my daughter's transfusion,i am sorry i don't know the technical details about Hep,but as i suggested before please start using Nigella (Kalonji) with honey,you can either grind it and make a mixture or you can take it as whole,it will help,one of our members Ambareen had very bad Hep and she reversed the situation with the help of this mixture,so please try it.

Hope this helps,if you wanna ask something else you can also PM me .

Zaini.

Hi All ,

@ Cheriean ,
Cheriean , ii m realy sorry to hear that you're going camptodacty,  is "camptodactyl" is something like this girl has ?? :


May You recover back to it veyr soon and wishing you a fast recovery to it ... May God Bless you with the best of health andfitness conditions  ....

@ Atiya Khan ,
AOA Atiya ,
  to Zaini, you can try Nigella as i m giving it a try as well , i think its harmless, the only question is how to take nigella and with wat you can can take it and answer is nigella+Honey= misx it up and swallow ...

one of our members Ambareen had very bad Hep and she reversed the situation with the help of this mixture,so please try it.

Zaini is right Ambareen was realy critical when she start taking Nigella + Honey ...
i would like you to read these posts to help understading and to know the amazing facts about Nigella ....

http://www.thalassemiapatientsandfriends.com/index.php?topic=2639.0;highlight=nigella

http://www.thalassemiapatientsandfriends.com/index.php?topic=2539.0;highlight=nigella

http://www.thalassemiapatientsandfriends.com/index.php?topic=1147.0;highlight=nigella

About S.Fe :
hummm ... Good to know that your S.fe is under 1000  , really impressing and amazed that , it is possible in pakistan as well ?? hahaha ,  yes it is , Your S.Fe level is in pretty fine levels , when you have done your last test S.fe ?? ..

about Reports :
i think, it would be better to share post with Zaini, Andy , Sharmin and Manal Like Experties , i m not good at helping people to medical aspects , so it would be better share here or to share your report to one of them by sending them PM ...

Liver :
before starting treatment of hep-b my liver   was 22-23cm  and  in post course of Lamuvidine my liver come to 17cm but its enlargring again and in my last USG it was 18cm  ..

Peg-interferon :
i have not yet started any alopathy treatment for liver , but my doc is looing for that , she gave my father 2 options my father asked which one will you sugest to go for and then she said Peg-interferon.. ( hey .. its nothing like that peg ) .... let's see wat happened , my father said he will go for peg-interferon bcoze of less side-effects ....

i hope i answered all the questions , if i missed anything then please let me know .. i will try to answer if i could ..

Best REgards
Take Care
Umair

Hi nice friend.
Never be sorry, I'm okay . Its called life's challenges.
Life is too simple so God makes it harder so I can be tough.
I couldn't see the picture you posted for some reason.
I have looked up the diagnosis before because the specialist gave me the name written down.
Wasn't that impressed as both the site and specialist were pretty negative.
Hahaha I got so distressed that I googled Thalassaemia just to calm myself.
At the moment I just take one day at a time and concern myself with Thalassaemia.
I understand and know about Thalassaemia and it helps me feel great about myself.
Its funny but it reminds me of all my accomplishments achieved so far.
Camptodactyl is scary as I'm not getting much support from the specialist and so I don't know whether I am doing things right. At least the physiotherapist is cool. We certainly have tried all sorts to help me with my work and living.

Cherieann,

Please keep us posted.  I hope that your hands feel better really soon.

Umair,
How are you sugar levels now?  Your ankle?

Sharmin

Will do Sharmin.

Umair I hope that you haven't over done things.
Look after yourself buddy.

Hi guys. Today my pharmacist was told that the desferal stability has changed so the desferal can only be mixed and used within 24hours.
Hence the reason for the flakes.
My chemist now has to make a new dose everyday and someone at home needs to do the weekend mixture for me. My medical team have been notified of the desferal stability and aren't very happy as they were not informed of the changes.
The good thing is that now we know what is happening and in a way maybe it can help our cause to get the exjade tablets in New Zealand.
Lets see what happens.

Good luck with that Cherianne  I really hope you'll get exjade soon.

Zaini.

  Haha Thanks Zaini

Hi ALL ,
Sorry for being too late to reply, i was to my PC nd i think i won as it is working again ...

@ Cheriean ,
its nice to hear that  things are not worst as i had thought but i think you ahve to take care of it ,  here are some links replate to the conditon you mentione  " camptodactyl " .. i hope you'll feelling  betterand recvering fast to that and will be soon cope with it completely ....  Always Praying ... about flaky desferal mixture , i will post something related to that in soon future ..
Good luck Cheriean , alot of good wishes and prayers ... Best REgards ...

Homology of lubricin and superficial zone protein (SZP): products of megakaryocyte stimulating factor (MSF) gene expression by human synovial fibroblasts and articular chondrocytes localized to chromosome 1q25.
http://www.ncbi.nlm.nih.gov/pubmed/11518279

http://en.wikipedia.org/wiki/Camptodactyly

http://www.angelfire.com/or2/ashlysworldofwonders/about.html

=============================
@ Sharmin :
Sis , Ankle is back to its real shape and its no more aching super but .... now i m having ache in my knees as results of slipping , yup , i slipped in my kitchen last sunday ( Thanx GOD nothing that much serious ) but i got hurt at knees and left arm ( i had a fracture in shoulder of the same arm ) thanx GOD my head were safe and not struck by naything nearby me , i m saying this bcoze i love this empty box ( my Skul/head ) that is used to store dried grass for camping reason ( bone fire camping ) ... but , everything is ok now , and i know knes will fine soon, wat can i do more about ?? nothing na ?? soo , my knees are aching Hurrayeee , ( when you cant do anything to solve a prob then its better to cheer/enjoy  this is wat i m doing "hurrayee" ) ..  about Sugar level : BSLs in controle , i increased a few units of insulin to get ride over it and its working fine ... no hypos and no hyper , only lil fluctuation and thats all ... dont worry everything is fine at my place ... n i m super fine  ...
=========================
Thanx for replies and your concerns .....
lots of Best wishes and REgards
Take CAre
Umair

Umair,

I hope that your shoulder feels better soon, and that knee.... I also hope that you will not have anymore issues, it really has been one thing after the other lately.  Take care bro.  I am happy that the BSL levels are good.

Sharmin

Umair,

Nice to hear about your BSL and ankle both being normal and under control! Sorry to hear about you slipping in the kitchen and hurting yourself. I hope you recover from it soon, insha-Allah!

I wonder what you were upto in the kitchen?   j/k

Take care and get some rest.. and.. put some antibacterial cream on your knee (don't want any infection).

Regards,
SF

Umair, wishing you a speedy recovery, please take good care
manal

umair uncle take good care of your ankle and no more sneaking into the kitchen :p