Thank you so much for posting these videos. I'll be having a stem cell transplant in the next few months. My previous neurologist was away when I reported that I couldn't walk as i had numbness in my legs with bladder problems. I tried to contact him/his office but had always led to believe that I was mild and was always compared to worse off patients. I wasn't given medication to manage my symptoms back then and I was treated horribly. Very conservative and willing to let people just get progressively worse without ever being open to discussion. I received an email from his receptionist to say that it was noted and put in my file. That's it. No follow up, no hospitalisation etc. I wasn't taken seriously at that stage. Two DMDs have failed and I've just had a follow up MRI, with new Neurologist, which shows aggressive disease and so I've been to see a clinical haematologist. I've been given the go ahead for a transplant and am being supported. I'm so happy that I've finally been taken seriously and that I have the opportunity to try and halt/slow disease progression to give me a few more years where I won't be paralysed etc. Hopefully it will ease the current problems I have. I'm 26 and I have a whole life I want to lead. Please know that you are not alone with facing an ignorant neurologist with ego issues. Hang in there, you are brave and I'm so happy to have found your vids!! Stay strong. :)
Thank you James for your comment and for taking the time to watch my video :)! It is great to hear that you are having a sct. I wish you all the best and a successful treatment! The neurological 'treatment' you've had sounds awfully familiar, I am really sorry you have had to go through such negligence...Spot on! They are not open to any kind of alternative discussion, patient's treatment isn't taken seriously. Thankfully you were able to find a hematologist and now a chance to halt the disease. I are really strong to have gone all this unnecessary resistance, but you never gave up and you fought for yourself and that is your greatest asset :) It makes me very happy and gives me strength to know that I have such lovely and kind-hearted viewers. I really appreciate your words. I am keeping my toes and fingers crossed for you as you will be having a life-changing! I was 26 too when I had my transplant and the odds are definitely against us since we are young and brave!
![โรงเรียนห้ามรัก โดนจับได้ตาย...!! [เอิร์นไดเม่]](http://i.ytimg.com/vi/4u02Sbr556Q/mqdefault.jpg)
Thank you so much for posting these videos. I'll be having a stem cell transplant in the next few months. My previous neurologist was away when I reported that I couldn't walk as i had numbness in my legs with bladder problems. I tried to contact him/his office but had always led to believe that I was mild and was always compared to worse off patients. I wasn't given medication to manage my symptoms back then and I was treated horribly. Very conservative and willing to let people just get progressively worse without ever being open to discussion. I received an email from his receptionist to say that it was noted and put in my file. That's it. No follow up, no hospitalisation etc. I wasn't taken seriously at that stage. Two DMDs have failed and I've just had a follow up MRI, with new Neurologist, which shows aggressive disease and so I've been to see a clinical haematologist. I've been given the go ahead for a transplant and am being supported. I'm so happy that I've finally been taken seriously and that I have the opportunity to try and halt/slow disease progression to give me a few more years where I won't be paralysed etc. Hopefully it will ease the current problems I have. I'm 26 and I have a whole life I want to lead. Please know that you are not alone with facing an ignorant neurologist with ego issues. Hang in there, you are brave and I'm so happy to have found your vids!! Stay strong. :)
Thank you James for your comment and for taking the time to watch my video :)! It is great to hear that you are having a sct. I wish you all the best and a successful treatment! The neurological 'treatment' you've had sounds awfully familiar, I am really sorry you have had to go through such negligence...Spot on! They are not open to any kind of alternative discussion, patient's treatment isn't taken seriously. Thankfully you were able to find a hematologist and now a chance to halt the disease. I are really strong to have gone all this unnecessary resistance, but you never gave up and you fought for yourself and that is your greatest asset :) It makes me very happy and gives me strength to know that I have such lovely and kind-hearted viewers. I really appreciate your words. I am keeping my toes and fingers crossed for you as you will be having a life-changing! I was 26 too when I had my transplant and the odds are definitely against us since we are young and brave!
Thank you! I am excited to follow you and your journey and wish you all the absolute best going forward :)
I really appreciate your words! Thank you for being a part of this and giving yourself a second chance to life!
James Taylor
It would be great if you made similar videos about your treatment. The more resources people have, the better.