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Charcoal Marie tooth and fybromyagia

geegee1104geegee1104 Posts: 11Member Listener
edited December 2017 in Neurological conditions
I have both. I have been told they usually ocour together with overlapping symptoms.
Anyone else out there got them both too.
Thankyou.

Replies

  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    Hi @geegee1104
    Welcome to the community.  

    @Elizabeth Siân Gwilliam wrote a guest post for us and has Charcot Marie Tooth and being a parent, you might like to read her post?
    Scope
    Senior online community officer
  • WeeAndCuddlyWeeAndCuddly Posts: 4Member Listener
    I've got the Fibromyalgia. 
    I've never heard of that charcoal tooth maria before.
    What is it exactly?
  • ChrisAllwood11ChrisAllwood11 Posts: 6Member Listener
    I think the condition is called Charcot (pronounced shark-oh) Marie Tooth also known as CMT.

    I have it and fibromyalgia too which is why I'm writing this post at 3.23am lol
  • ChrisAllwood11ChrisAllwood11 Posts: 6Member Listener
    CMT is where the nerve sheath on the longer nerves is cracked. The electrical impulses do not reach the muscle as quickly or strongly as usual in others (think of a leaky hose pipe and the drop in pressure at the nozzle end).

    The consequences of this condition are below knee muscle wastage, loss of sensation in the feet/ankles, joint disorders and loss of balance. In some people the hands are affected in a similar way.
  • CazannCazann Posts: 88Member Pioneering
    Hi Geegee and Chris

    I have HNPP (Heredatory Neuropothy with Pressure Palsy) and that is similar to CMT. I have numbness and muscle pain, including weakness in my ankles and hands. I also have ostioarthritis in my knees. I have been on DLA for 13 years and had to apply for PIP. I was turned down and I'm now in the process of appealing'  I've been through the Mandatory Reconsideration and turned down. My elder sister has the HNPP and is still on DLA and doesn't have to apply for PIP, as she was born April 1946 and is exempt.
    Are either of you getting PIP for your complaint and how do you cope with your  problems?

    Good luck.
  • ChrisAllwood11ChrisAllwood11 Posts: 6Member Listener
    Yes, I am getting PIP but was turned down the first time. I ended up going in to the interview with ALL of my medical notes including a letter from my GP.
  • geegee1104geegee1104 Posts: 11Member Listener
    I am getting pip for both my condition. Cmt and fybro
  • CazannCazann Posts: 88Member Pioneering
    I am getting pip for both my condition. Cmt and fybro
    Hi geegee1104. Are you getting the higher rate for your condition?

  • geegee1104geegee1104 Posts: 11Member Listener
    Hi. I get enhanced for daily living and standard for mobility.
  • geegee1104geegee1104 Posts: 11Member Listener
    Hi cazzan. New to the site and I'm not completely sure how to reply to messages etc yes I am. I have been on Pip for 3 years now but I'm up for renewal at any point now I am dreading it like lots of people they have being made to jump through hoops and losing the benefits the whole system is a total mess they touch you like your condition is going to go away and get better but obviously with a chronic condition like CMT and fibromyalgia it's chronic and will deteriorate over time it swings and roundabouts with both of my conditions as they bounce off each other and I'm never quite sure of the symptoms which belongs to which one as they are very overlapping pace yourself listen to your body when my feet are bad I use ice cold water then bandage them up and put them on a hot water bottle just a warm one not a boiling water I have lots of altar plays on managing my life I tried to be economic with my walking when I get going there are days where my limited capacity is only a few hours either get going in the morning or don't get going to tea time it's confusing debilitating frustrating condition I am also asthmatic I had to epileptic fits 17 years ago and I've been free since but still have to take medication that's the rules of the DVLA I also suffer from depression anxiety panic attacks as well as I am registered deaf in both ears sorry for the long post my treatment for my fibro and CMT are lamotrigine for the epilepsy and Lyrica for the CMT I wear orthotics shoes which I have specially made for me at the hospital the deafness I believe is connected with the CMT I hope you find this helpful apologies in my reply being so late gentle hugs  x 
    Kim 
  • SunshineLouSunshineLou Posts: 93Member Courageous
    edited June 2018
    Hi @geegee1104 to alert someone just put the @ sign in front of their name and it’ll come up so they get a personal notification.
    Im new too and just found that out a few days ago!
    if you need help with PIP try the following;

    Benefits and Work website,
    FightBack for Justice website.
    or even the CAB.

    All 3 are good but for me the first was a huge eye opener!
    FightBack actually can do all the paperwork for you and accompany you to Tribunal hearings if needed. They do charge for their services but in the scheme of things? It’s worth it for the great support they provide. Most of them are solicitors too and know the laws back to front.
    Hope that helps a little....to all you guys who are still struggling!
  • CazannCazann Posts: 88Member Pioneering
    Hi @GeeGee1104 Thanks for your reply. Also thanks to @SunshineLou for the info on the @ sign.
    You seem to have it bad with your disabilities. I would have thought that you should get the higher rate mobility. You have CMT, which is similar to HNPP.(Which I have) There are variable degrees of disabilty to both these diseases and yours sounds like it's one of the worst.  This whole PIP assessment is a mess. I've been on the Disability Rights website and it seems that the DWP  have given, Atos and Capita (Who do the one to one assessments) another 2 year extention of thier contracts! They have made a right mess of the past assessments. I am still waiting to hear when my tribunal is but I've been told that it's a 9 month wait!
    Good luck GeeGee1104 with your renewal. I'll keep my fingers crossed.
    Take care
    Cazann.
  • SunshineLouSunshineLou Posts: 93Member Courageous
    @Cazann wow! 9 months! Oh my gosh that’s crazy. It’s just getting worse and worse by the sounds of it.
    I think we all know what a huge mess the assessments are.
    Im so fortunate. Recently I had yet another re assessment and this time? They actually accepted that my brain injury and spinal cord damage won’t be getting any better and have given me an ongoing award! To say I was surprised is an understatement!

    My case didn’t even get to Tribunal. The DWP changed the decision straight away.
    The clerk of the court did tell me, over the phone, to send in ALL the evidence I’d ever had to back up what descriptors I disagreed with. I did just that and it made all the difference. I gave them 4 years worth of letters from GP, Social worker and my Neurologist and they then couldn’t argue. 

    Every time I read of other people’s experiences it breaks my heart :( 
  • CazannCazann Posts: 88Member Pioneering
    @SunshineLou That is great news.It seems like you had plenty of evidence to back up your claim. Was this your first claim for PIP and had you been on DLA? I had been on DLA indefinitely for 13 years. I had osteoarthritis in my knees and lower back. I was on higher rate mobility but not the care component. About 4 years ago I was diagnosed with HNPP and as you know is similar to CMT. I then I had to claim PIP last November. I was turned down, I appealed and that was turned down. I went  for Mandatory Reconciliation and that was turned down. So I'm now waiting to go to tribunal (No date yet) My problem is that I don't go to my doctors very often and I'm only on Naproxine, as well as my thyroid drugs.  I haven't had any treatment for my HNPP (There's not a lot you can do for it) So I've not got a lot of medical input, only a letter from my Neurologist. Do you think that is enough?. I know that my doctor used to charge for letters but now he will not even send them!
    Anyway I'm pleased that you have got your award.
    Take care.
    Cazann
  • SunshineLouSunshineLou Posts: 93Member Courageous
    @Cazann hello, I’ve been on PIP since 2014. I was told by a nurse in hospital to apply for it and was granted straight away enhanced rate for both but only for two years. I was completely paralysed at the time.
    my condition is ADEM. Acute Disseminated Encephalomyelitis. Think MS but a very severe one time attack. I have brain and spinal cord lesions and extensive myelin damage. I also now have a condition called increased tone. My muscles don’t relax and that makes walking very laboured.
    I use a wheelchair and crutches. My ongoing award is for enhanced rate on both.
    its the 4th time I’ve been assessed in the last 4 years too!!!!
    I can’t quite believe it’s now over for at least 10 years! I spent two days in tears following that usually dreaded brown envelope arriving! I’m still shocked!

    All the advice I can give is to get as much medical evidence as you possibly can and back it up with personal statements from people you know who know your problems. Give as much detail as you can and don’t down play anything. Give it to them straight! I was guilty at the start of not wanting to seem disabled. I’ve had to get over that and just face it head on. I’m not who I used to be and I need help with most things. Thankfully they now realise that’s not going to change. All of my previous awards have been for 2 years but I was reassessed in much shorter time frames than that. I’ve had to ask for MRs twice and this last time I had to appeal. Luckily it didn’t go to court after I gave them ALL the evidence I’d gathered over the years! I’m glad I phoned the number on the appeal letter and got to speak with the clerk of the courts. I’d never have known to submit everything I had. I just assumed they’d have all of that info anyway.
  • SunshineLouSunshineLou Posts: 93Member Courageous
    @Cazann, just to add.....PIP is now assessed in a much more strict way. That’s why they’ve made the change for working age people. They know if they make it harder to qualify for they can save money. 
    I can’t understand why they’ve changed your award though. It does sound like you need it!
    They’re not treating anyone fairly these days. No one I know has had the result they should’ve got to start with! :( 
    A friend of mine went to Tribunal two years ago and they awarded her Enhanced on both. They’ve just stopped her money, again! She’s now doing the whole thing again and is stressed to the max. She has a brain injury too x
  • CazannCazann Posts: 88Member Pioneering
    @SunshineLou. I just cannot believe the way you have been treated over the years. Being assessed every couple of years for a disability that will not improve and putting you through all the stress, is downright cruel. The way that this government are treating genuine disabled people is appaling. I know that there are people who are not disabled and claim but they shouldn't assume that of everyone. 
    I have read that the government want a reduction on people who are on enhanced rate disability. I can't remember the target figure but it was in the hundreds of thousands.
    Thanks for your info and advice
    Take care
    Cazann x
  • SunshineLouSunshineLou Posts: 93Member Courageous
    @Cazann thanks for those words. It means a lot! 😘
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