Charcot-Marie-Tooth UK
1,288 members521 posts

Help

Hello Every1,

I am devasted. My life has turn up side down since I have been diagnosed with CMT.

My dad, uncles and cousin have it I am the first woman in my family to go trough this. I started to get symptons about an year ago And now is developing ..

I feel let down as I been seen since last summer by the Neurology department but I didnt get any support emotionally or I to help me to walk better with the help of Aid.

I feel very disappointed as I been refused to be awared on PIP.

As any1 been refused? I mean.. I know I should appeal.. does it gonna make a difference? This is the reason I didnt want to try in the first place. This made me feel really down. I feel so let down.

Any advice?

17 Replies
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I am not from the U.K. But if your PIP is anything like our Social Security Disability, here in the US, then yes, definitely appeal. They figure that if they denied it then you will not try again and they will not have to pay. It cannot hurt to retry. Unless it costs you to apply/reapply what are you losing by reapplying?

Just my opinion though. Hope everything goes well for you.

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Is about going to fight for your right... having people be the judge on how your disability affected you...

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Thank you for your words!

At the moment I only have little support but what make a big difference is not to feel alone.

I just hate to go trough the process of fighting for my right.. it hurts.

I will contact Emelie.. I just have to tell my self that If I want to fight this I have to be strong...

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Look don't be afraid there are people out there willing to help you, pick yourself up and say, you know what I may have CMT, but I'm a FIGHTER!

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Do you know what? You made my day. You made me feel less alone in this.

Is because of your words that I feel a bit of motivation in doing this. Is just so sad... you know what make me angry the most? The mostly doctors dont even know what it is... and they still pretend they do!

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I wanted to share the news with you. Today I got my money for PIP. Thank you. You and other ppl here really made a big difference. I felt lonely and I was devasted when I got rejected. You and others here give me the strengths tof go for an appeal. I done it and then tried to doing think about it to much... today I just checked my account and sow the money for it. Still don't know how much I will be getting as I didn't get the letter.. however..I feel good today! I feel like I got justice! Is horrible to get refused and go to do the appeal but was worth it for me!

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Hooray !

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We all forget sometimes that there is only so much money that PIP and the US equivalent have and they try to give it to the most needy of us. If you need it then you fight.🥊🤼‍♂️

I lost the first and second times that I applied, the third time I got a lawyer and went before a judge. I told him what my daily life was like now and what I no longer could do. I asked him who he thought would hire me? I won that one.

Please do not give up!

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Thank you for taking the time to write me.. you guys are making me feel less alone

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Have you written down the information that I've given you?

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Yes I did. Will do it on monday if I am in a better mood to do it...

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Check again, because I'm going to delete that message with the information because it was only meant for you,

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Do you mind me asking, are you female, how old are you?

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I am 25 years old. Female

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Let us know how you get on young lady.

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Sorry to ask, did you make contact with Emilie?

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I suffer as you also i claim AA attendance allowance try this. Good luck. And don't beat yourself up think positive & face the world.

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