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
jilly94312 jasmin_83782
Posted
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
jasmin_83782 jilly94312
Posted
jasmin_83782 jilly94312
Posted
jilly94312 jasmin_83782
Posted
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
jasmin_83782 jilly94312
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