Lambert-Eaton Myasthenic Syndrome

I hope that we can help each other with our individual experiences, as I too feel unsupported. I have not been informed about the drugs that I am taking, or given suggestions on diet. I dont know if I am doing right by exerting myself on the few occassions that I feel able. All I have been told by both my GP and Consultant is that it will take time, but no indication to how much time. I have been told that I will be able to lead a normal life and should be able to return work as an administrator.

My consultant did inform me that LEMS was not hereditary. I have learned more from articles on the internet. I was diagnosed 4 months ago, so I have a long road ahead?

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Sorry for taking so long to get back to you.

I think you have been given about the same info as i have from the 'experts'!!! Nothing that makes sense if your not a doctor. My doc isnt that great and I keep getting a new consultant which is really annoying. Have you met Prof Newson-Davis in Oxford yet.

How old are you? just curious as they seemed to get a diagnosis far quicker for you than i did.

You were saying about the drugs, I am taking 3/4 DAP every 2 hours and i find thats helping a great deal. I was told it was still in researching and not on the 'medical market' yet so god only knows what i'll do if that they decide its not suitable, thats about all i have been told about the medicinal treatments. I have been told to think about a major blood transfusion to attempt to wash the lems out of my system. This sounded great at first as it could be almost a complete cure but then i was told that on the other hand although they can test blood donations for HIV etc it could still be contaminated by other infections that they cant look for and it could interact with the LEMS and leave me worse off.

You said you were unsure whether exerting yourself would be worth it, I couldnt really give you advice on this because the LEMS seems to affect me whatever i do. If i go shopping for example i have to keep sitting down and am in agony and almost paralysed by weakness for hours afterwards, I have also had to give up almost all excercise because I just cant do it, have you read the 'feels like your walking through treacle' description of LEMS yet? well thats how i feel if i try using my legs for anything other than walking at the slowest pace!

Relaxing just isnt worthwhile for any length of time for me either, I was at my mums earlier this week and after sitting for an hour or two watching tv she had to help me off the sofa and escort me the 20metres home as i felt like my whole body had seized up. Boy am i glad we stay only 6 doors from each other or i think i would have been carried over her shoulder!

I think its great that its looking promising for you returning to work. I have been unable to work for almost four years now. I had been working as an administrator too, and when the LEMS started to get worse my employer was great and I was 'desk bound' but then the blurred vision and slurred speech came on really quickly and i could hardly speak at times or see the monitor. After only a few months it was really affecting my work and i was advised to resign.

I was also wondering, if your not working at the moment have you claimed all the benefits you are entitled to [DLA etc]. I know what it was like trying to pay the bills when your not able to work so make sure your claiming all your entitled to.

Hope my [little] knowledge on our very confusing disease has helped and i would love to hear from you soon.

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Hell-o L.

My husband has had LEMS for many years. We do not know of a support group but plan on creating one with the help of a doctor who we discovered on Dateline NBC which is a program here in the US. We are so sorry that you have LEMS and that you are so young! You are not alone and we DO KNOW WHAT YOU ARE GOING THROUGH!!! We hope we can be of assistance to you somehow. My husband is on a medincine we think has kept him on his feet. Email us and maybe we can be of assistance to you. Our email is ****. Take care and don't give up!

Best wishes, Zaneta and Steve Wirtz P.O. Box *** **** Creek, OR ****-**** USA

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I was diagnosed with LEMS 11 years ago. I am a 53 year old woman. It was a long road to get to where I'm at now, symptom free. I use daily small dose prednisone and monthly IVIG treatments I get at home that take about 3-4 hours. I am also Type 1 diabetic and that is much more work. Keep faith it will get better.

There is a group on Facebook, "LEMS" I started today, if anyone is interested.

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 !!!