I hope you are ok now. Just wanted to tell you that you are not alone.. i too diagnosed with this condition and zic4 antibodies in my blood which apparently affected my eyes partially. I don't know what to do amd where to go because i have done with all the hospital visits and doctor appointments amd had already spent a hell lot of money without having any cure!! So i have decided to live on with it, hoping that one day i will get cured fully by the power of my own mind. Be strong and confident in your own body's healing power. One day you will be cured.. You will be in my prayers🙏. All the best
Hi Tamina, thanks for sharing. I live in Sydney. I've had 2 tests for onconeural antibodies and positive for CV2 antibody. I've had a CT scan for Chest, Abdo and pelvis which was normal. My neurologist has given up on me. I've had an MRI which shows lesions in the cerebral hemispheres but the doctors just keep saying you don't look sick.
I live in the US and I came across your channel because of the issues I may be having with my appendix. After following your husband and watching his vids I started watching some of yours. First off let me say that I think you two make a sweet couple and you seem to have an amazing family. It seems to me that the doctors there in Australia suck, not saying they are any better here but I want you to know that my heart goes out to you and your challenges. I am not sure if praying works or not but I just wanted you to know that I have positive thoughts and wishes for you and your family. I hope you feel better soon.
Aww thank you what lovely words. Yes here in Australia might be free health care at times but the doctors are not the best unless you want to travel 5hours or so.
Tamina snuka,please don't sick and stay healthy💔😭😭😭 i'm so sad by the way tamina,tomorrow is your birthday! i knew your birthday i hope you feel better soon and i hope you have a perfect,happy birthday tomorrow and tamina snuka you are my favorite wrestler i really miss your wrestling #Thankyousomuchtamina
I've currently been tested for paraneoplastic syndrome via blood test not lumbar puncture just awaiting the results, I also have two ovarian cysts that I'm on the waiting list to have removed. I've being tested because I've been getting seizures and strange movements its affected my life greatly can't work and drive atm I've been prescribed tegretol and that's helped 95% of the time . Always seek a second opinion my first neurologist dismissed my symptoms as stress related due to trauma but I've never had trauma in my life and I know my body something isnt right and hopefully I will get some answers soon.
Sounds lot like me so I got re tested and came up clear from paraneoplastic syndrome 🤷♀️ I have Ms keep fighting took me years to get a Neuro who found what was wrong,just had first round of chemo for Ms, I'm also on tegratol and lyrica, stick to your guns ask for mris evoked potentals tests. X
I know its a strange thing to want but I hope the test is positive I don't think I can handle someone telling me its stress related. I seeked a second opinion from another gp and he seems to think its epilepsy and he was the one that prescribed me tegretol. But the neurologist saw my video of these episodes and said that this isnt epilepsy and ordered tests for paraneoplastic syndrome and a abdomen and pelvis ct scan. I'm dreading the appointment I have in a few days because I'm afraid he will say your tests are all normal which is a terrifying thought because I think it's way worse when you're not well and they don't know why.
Nada Ghazawy I totally understand I too have weird fit like things have a look in my video there’s one I’m in hospaital have some kind of twitch,but I also have seizures and my shoulder twitches and I can’t talk or anything, let me know how you go x
@@TaminasWorld I went for a review appointment on Friday and my tests came out normal so I don't have ovarian teratoma or paraneoplastic Syndrome due to that. He agrees with my first neurologist that its non -epileptical movement but he didn't say its stress related because I made it clear I don't have any crisis in my life he said he cant diagnose me with anything because he doesn't know what's going on and doesn't want to medicate me with things that can make my quality of life worser then better. Although he has put my name down for a thing that doctors come in discuss the issue and collaborate and come with some suggestions of what could be going on which takes a year to happen because of coronavirus. I going to seek another opinion. I wanted to ask when you got tested did he test for a certain antibody or he test for all types because I feel testing for one antibody isnt really helpful in trying to determine an issue.
Did a Google, apparently as soon as the cancer is removed it's not life threatening disease. Lungs, kidney, overies, stomach, brain and pancreas, breast and skin cancers can trigger it. Best of luck xox thinking of you.
I hope you are ok now. Just wanted to tell you that you are not alone.. i too diagnosed with this condition and zic4 antibodies in my blood which apparently affected my eyes partially. I don't know what to do amd where to go because i have done with all the hospital visits and doctor appointments amd had already spent a hell lot of money without having any cure!! So i have decided to live on with it, hoping that one day i will get cured fully by the power of my own mind. Be strong and confident in your own body's healing power. One day you will be cured.. You will be in my prayers🙏. All the best
Try remain positive and keep fighting. I got 2 young kids too.
Add me on Facebook Tamina Christopher
Hi Tamina, thanks for sharing. I live in Sydney. I've had 2 tests for onconeural antibodies and positive for CV2 antibody. I've had a CT scan for Chest, Abdo and pelvis which was normal. My neurologist has given up on me. I've had an MRI which shows lesions in the cerebral hemispheres but the doctors just keep saying you don't look sick.
Wow you sound like me
Keep pushing I'm in the same boat atm
@@TaminasWorld Thanks Tamina. That's the only way.
Who's your neurologist and where do you live? I recommend a neurologist if you're in Sydney.
Oh my goodness, that's heartbreaking to hear. We're here for you
Love you mina 💜 our thoughts are always with you xoxo
Love you back beautiful xx
I live in the US and I came across your channel because of the issues I may be having with my appendix. After following your husband and watching his vids I started watching some of yours. First off let me say that I think you two make a sweet couple and you seem to have an amazing family. It seems to me that the doctors there in Australia suck, not saying they are any better here but I want you to know that my heart goes out to you and your challenges. I am not sure if praying works or not but I just wanted you to know that I have positive thoughts and wishes for you and your family. I hope you feel better soon.
Aww thank you what lovely words. Yes here in Australia might be free health care at times but the doctors are not the best unless you want to travel 5hours or so.
Tamina snuka,please don't sick and stay healthy💔😭😭😭 i'm so sad
by the way tamina,tomorrow is your birthday! i knew your birthday
i hope you feel better soon and i hope you have a perfect,happy birthday tomorrow
and tamina snuka you are my favorite wrestler i really miss your wrestling
#Thankyousomuchtamina
I've currently been tested for paraneoplastic syndrome via blood test not lumbar puncture just awaiting the results, I also have two ovarian cysts that I'm on the waiting list to have removed.
I've being tested because I've been getting seizures and strange movements its affected my life greatly can't work and drive atm I've been prescribed tegretol and that's helped 95% of the time .
Always seek a second opinion my first neurologist dismissed my symptoms as stress related due to trauma but I've never had trauma in my life and I know my body something isnt right and hopefully I will get some answers soon.
Sounds lot like me so I got re tested and came up clear from paraneoplastic syndrome 🤷♀️ I have Ms keep fighting took me years to get a Neuro who found what was wrong,just had first round of chemo for Ms, I'm also on tegratol and lyrica, stick to your guns ask for mris evoked potentals tests. X
I know its a strange thing to want but I hope the test is positive I don't think I can handle someone telling me its stress related.
I seeked a second opinion from another gp and he seems to think its epilepsy and he was the one that prescribed me tegretol. But the neurologist saw my video of these episodes and said that this isnt epilepsy and ordered tests for paraneoplastic syndrome and a abdomen and pelvis ct scan.
I'm dreading the appointment I have in a few days because I'm afraid he will say your tests are all normal which is a terrifying thought because I think it's way worse when you're not well and they don't know why.
Nada Ghazawy I totally understand I too have weird fit like things have a look in my video there’s one I’m in hospaital have some kind of twitch,but I also have seizures and my shoulder twitches and I can’t talk or anything, let me know how you go x
@@TaminasWorld I went for a review appointment on Friday and my tests came out normal so I don't have ovarian teratoma or paraneoplastic Syndrome due to that. He agrees with my first neurologist that its non -epileptical movement but he didn't say its stress related because I made it clear I don't have any crisis in my life he said he cant diagnose me with anything because he doesn't know what's going on and doesn't want to medicate me with things that can make my quality of life worser then better.
Although he has put my name down for a thing that doctors come in discuss the issue and collaborate and come with some suggestions of what could be going on which takes a year to happen because of coronavirus.
I going to seek another opinion.
I wanted to ask when you got tested did he test for a certain antibody or he test for all types because I feel testing for one antibody isnt really helpful in trying to determine an issue.
Did a Google, apparently as soon as the cancer is removed it's not life threatening disease. Lungs, kidney, overies, stomach, brain and pancreas, breast and skin cancers can trigger it. Best of luck xox thinking of you.
Thank you beautiful xx
You look beautiful silly.