lambert eatone syndrome !

Posted , 2 users are following.

Hi I'm jasmin and I am 24 years old I got diagnosed with lems about 2 year ago !! Have had no body to talk to and feel so alone !! My mobility has deteriorated as with everything else ! I'm also on prednisolone and 3:4 dap and have treatments every 4 weeks through drip !! I have a 5 year old daughter!! I do struggle so much ! It feels a constant battle for every day to day activities !! Would be overly to actual talk to some one who knows how it feels !!!

0 likes, 5 replies

Report / Delete

5 Replies

  • Posted

    Hi Jasmin,  so sorry to hear that you  too have LEMS.  I am 65 and after 8 months of investigations I was finally diagnosed in February of last year.  My neurologist had great difficulty being able to prescribe 3,4,DAP so for several months I took Piridostigmine which helped a little but was in a wheel chair and using crutches until finally in July last year I got 3,4,DAP which I now take as well.  I am now able to walk fairly normally so long as I take my tablets every 4/5 hours.  I also  take Prendisilone but have. Managed to cut this down at the moment to 10mg per day but also take Methotrexate weekly which hopefully after a year will take over from the steroids. My thyroid does not function properly so I take medication for that and also have vitamin  B injections.  I don't feel I have got any worse over the last year and hope this will not change.  I do get tired but unlike you I no longer have any children to look after as they are all grown up!

    i hope you may feel a little better knowing that there's someone else in the same position as you but you are so much younger it seems v unfair that it has happened at this stage of your life.  Please contact me if you feel it would help.

    Jilly 

    Report / Delete Reply
    • Posted

      Hi jilly ! Lovely to hear from someone who in in the same boat as me !! I have recently been told that they can no longer supply the 3.4 dap and am trying to sort it out now ! Have u had the same issue ? Thank u for replying Jaz
      Report / Delete Reply
    • Posted

      Hi Jasmin,

      No I have not been told this!!!  I have about one month's supply of 3,4 DAP left.  I am prescribed the unlicensed tablets as the ones which are supplied by the American company who have licensed 3,4 DAP are prohibitively expensive and I was told I would never get them in spite of my neurologist writing many letters and documents on my behalf to NICE and NHSUK.   Which tablets do you have?  Who has told you this?  I cannot believe that this medication which has transformed my life and I am sure yours could be stopped.  Keep in touch.

      jilly

      Report / Delete Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up