julene55
1 post
18-Apr-2005
2:48 PM
|
Hi.
I have suffered with the above now for 5 years and we are few and far between it would be lovely to chat to people who have the same illness I keep in touch with 3 people by phone but that can be expencive If any of you out there would love to chat i will be so happy tp hear from you.
Julene55
|
Zofia2
3 post s
17-Jun-2005
7:26 AM
|
hello,
i am diagnosed with miasthenic syndrome.i'm from holland. i don't know what type i have, but i recognize every symptom of lems. i am really convinced it is lems.
did your neurologist find the antiserum of lems? what treatment do you get? i only am on 2 ubretid daily. i feel very insecure about the prognosis, especially the cancer risk bothers me a lot. i also am still getting more walking problems.
i hope to hear from you soon,
zofia2
|
Dean
3 post s
20-Jun-2005
1:31 AM
|
Hi I have been diagnosed with Lambert Eaton now for over a year, and now seem to have it under control....I have returned to work, however every 8 weeks I have a relapse and need IVIG infusion over two days....
If you want to speak to people with LEMS there is a Lambert eaton community sponsored by Third Aid.com, at the moment there are 11 members.
|
Zofia2
4 post s
20-Jun-2005
10:31 AM
|
thanks dean, i send you a message. zofia2
|
bhrkp
2 post s
21-Oct-2005
6:30 AM
|
Hello I've had LEMS for 5 years and have not meet anyone else with LEMS
Would like to here from youRob
|
MartinL
2 post s
1-Nov-2005
3:47 AM
|
I was diagnosed with Lems about 8 or 9 years ago in South Africa, I now live in Cheltenham UK and because there seem to be so few people with this condition we do feel a bit isolated out here. I would be happy to communicate with any of you fellow Lems patients either through the forum or direct if preferred.
I am on conventional treatment - DAP, Mestinon and Azathioprine but am constantly looking for other ways of dealing with the condition and have come across some interesting information on the web which I would be happy to exchange views on - they deal mainly with other auto immune conditions but the basics could still apply in our case. It seems to be a case of finding the root cause as opposed to suppressing the symptoms.
I will try to check in on this site each day to keep in touch.
Martin
|
AndyW
2 post s
3-Nov-2005
7:37 AM
|
Hi All, I was diagnosed with LEMS in January 2003 after approx 1 year of not knowing what was going on, first with my vision and then increasingly with my muscle strength.
The road to recovery has been long but I am now very nearly back to a normal life. In my case once diagnosed immediate relief was given by 3/4DAP but this was rather innefective after a time. I continued with DAP with the addition of Steroid treatment for over 6 months with some improvement but soon found the side effects of large steroid doses unnacceptable. The Myasthenia Centre at Oxford looked after me during this time and it was decided to try cyclosporine. Initially this required me to take both the Steroid and Cyclosporine as the latter can take up to 1 year to become fully effective. After a few aborted attempts I managed to get off the Steroids in Dec 2004 and have been stable on Cyclosporine only for nearly 1 year. I wouldn't say it is completely without side effects but those that remain are manageable and I do work full time and do most things except sports & walking long distances. I am now 52 years old and still manage a Scout Group as Group Scout Leader and also ride motorbikes as a hobby.
I like most people when diagnosed with this condition wonder if there is a future but I can honestly say that with determination and the skill of the medical professionals it is possible.
Good luck to all of you with LEMS. Please contact me through the forum if you would like more info about how I got to here.
|
abigale2
1 post
30-Dec-2005
2:44 PM
|
HI
My husband was diagnosed with LEMS 18 months ago. While using 3/4 DAP and Mestinon, have any of you found any other meds useful?? it seems his DAP only lasts less than 4 hrs per dose. He did the steroid thing but quit as soon as he could. I'd love to talk to anyone with this disability.
Thanks, Pat
|
abigale2
3 post s
30-Dec-2005
3:01 PM
|
Andy, can you givme me more information on the medical treatment found in Oxford??
Thanks, Pat
|
CazM
19 post s
8-Jan-2006
10:48 AM
|
Please can you tell me what is different between having MG and Lems? I have never been able to really understand this. Thanks
|
Levitas
96 post s
8-Jan-2006
11:37 AM
|
http://www.mgauk.org/infopack/volume2_1a5.pdf I think the above will answer your question.
|
CazM
20 post s
10-Jan-2006
12:20 PM
|
My old computer wont download adobe, so still dont know difference-anyway dont worry, was just interested as it comes up alot. Thanks anyway. Caz
|
JohnnyG
60 post s
10-Jan-2006
11:09 PM
|
Wikipedia (as always) has a good page on LEMS: http://en.wikipedia.org/wiki/LEMS
|
Levitas
98 post s
11-Jan-2006
1:04 AM
|
Caz,
Adobe Reader is a free download and ought to be very easy to instal.
Alternatively why not telephone MGA office in Derby to get your Information Pack. If you live in the UK they will post you one for free.
No myasthenic should be without one!
Last Edited Levitas on 11-Jan-2006 1:06 AM
|
JoG
1 post
17-Jan-2006
12:18 PM
|
Hello to all in the exclusive club that is LEMS,
My name is Joanne and I have had Lems for 23years now give or take a few months, I am forty years old.
I was diagnosed by Professor Newsom Davies and have been in his care ever since. I was just 17...and you know what I mean(sorry Beatles flash) recovering from a flu like illness and studying for my A levels. To cut a long story short I did not recover and became increasingly weaker, found it hard to chew, swallow, walk get out of a chair and so on. After being admitted to Walton Hospital, the consultant there, Dr Blumhardt referred me to Professor Newsom Davies who at the time was in London. Looking back I can see I was fortunate that Dr Blumhardt knew of Professor Newsom Davies - a case of I don`t know what is wrong with you but I know a man who probably will.
From the very beginning I have known that the road to some sort of recovery would be long, there would be highs and lows along the way, but the team in Oxford have made this a very bareable journey.
I have tried various treatments some have helped some had side effects that outweighed any benefits and were stopped.
I have had two beautiful daughters, both conceived while on my medication, one is sixteen next week and the other is eleven. I have acccepted that some days are good some are bad, I know my limitations, put it this way I am not doing the London marathon this year. It took me a long time to understand this condition, by that I don`t mean the physics, more how it affected me emotionally, and I decided to look at what I was able to do and it varies day to day and not what I cannot do. I have support from family and friends who do not see the droopy eyes and funny walk - actually it is quite a sexy wiggle so I have been told ( by my husband) , they do not see the extra layer of fat from the steroids, they just see me, my resolution this year was I would start to do the same.
My advice for what it is worth, is try to stay positive, talk to somebody if you feel down _ drink red wine - try to have a sense of humour. I made a toilet fall off a wall because my legs gave way and I sat down too heavily, I decided to laugh not cry.
I think most of all don`t become your illness if that makes any sense, LEMS is just a passenger and with any luck the people with enormous brains and dodgy footwear will find the cure.
Hope I haven`t bored you.
JoG
|
charlotte
1 post
22-Feb-2006
1:12 PM
|
I am 62 year old female. I've had LEMS without cancer for about 26 years. My symptoms began when I was about 35. It took about a year to diagnose, but was eventually confirmed by Dr. Elmquist Lambert at the Mayo Clinic in Rochester, Minnesota. I was on prednisone for over a decade, and lead a virtually normal life until about 1998 when my symptoms began to become more bothersome. I had to stop working in July of 2002. I am home now on disablity pensions. I have had plamaphersis twice (awful) and IVIG infusions quite a few times. I tried Cellcept - which is a non-steroidal immunosuppresant drug. Unfortunately, I have had LEMS too long for this drug to help me, although it helps about 70% of MG patients. I have been on the DAP since 2000 and it has been a life saver, but I continue to get weaker. I have had double vision and droppng eyelid at times. I take Mestinon and the DAP together about every 3 hours just to keep going. I would love to correspond with someone who has LEMS - autoimmune variety - because it is so rare. I live in North Florida. I am wondering about bee therapy and other venom treatments and the progress of vaccine and virus treatments. I would love to exchange information with anyone in my position.
|
eDutchman
1 post
1-Jul-2006
8:58 AM
|
I have just been dxed with SCLC (Small Cell Lung Cancer). I am done with 3 weeks of twice a day radiation and three times of 3 week cemo. The reason they found the lung cancer was that I had muscle weakness in my legs. Two doctors could not find anything wrong so I went to a nuerologist. He Thought I had Myasthenia gravis. He Ordered a cat scan to check the thymus and set me up to have the thymus removed. Well the doctor who was going to do it noticed a nodule and said to get that checked out first. Long story short they did a biopsy and said I had SCLC. Then the neuro did a special blood test and found out it is not MG but Lambert Eaton Myasthenic Syndrome. Is there anybody out there who has this? I have not found anybody else. I also have some question about 3,4Dap. I had a compounding Pharmacy make some but it does not seem to be working. I am using guanadine and it does help.
I am from Corpus Christi Texas. Thanks for reading this.
|
Max Sherman
Derby Support
47 post s
2-Jul-2006
3:27 AM
|
Dear eDutchman,
Have a look at the Medical Video where Prof Newsom-Davis talks about small lung cancer and LEMS. I think you will find it interesting.Regards
Max (from the left menu, click on MGA Publications and then select one of the two medical video versions. It is recommended that you read the Instructions First) ----------
Max Sherman
Office and Support Manager MGA
max.sherman@mga-charity.org
|
eDutchman
2 post s
2-Jul-2006
5:18 PM
|
Max:
Thank you for your response. I watched the viedo and it is very informative. Regards Eldon
|
Liz181
136 post s
3-Jul-2006
12:02 PM
|
Dear eDutchman If you log on to the forum of www.thymic.org, somebody there may be able to advise or point you in the right direction as people with thymic cancer sometimes get misdiagnosed with the type of cancer you have. They also sometimes get tumours on their lungs. I had to have part of the lining of my lung removed. However, most of the people on that forum appear to be absolute experts in all sorts of cancer treatment! Hope this helps, also this is an American forum. Take care
Liz
|
fay88
1 post
27-Jul-2006
12:59 PM
|
My husband has just been diagnosed with LEMS. He has quite a bit of trouble with his hips and legs at the present time. He is on Mestinon which helps a little. The Nuerologist told us yesterday that he has LEMS> We are scared and stunned. We are going to see our regular GP today . Not sure what to expect and what will happen next. Looking for any and all advice and to share with someone who understands.
Last Edited fay88 on 27-Jul-2006 1:01 PM
|
honey47
1 post
6-Aug-2006
9:23 PM
|
Hello,
Iam new to this group. I was just dx with Lambert Eaton Syndrome. I dont know anyone that has this so Im new to this. I've been miss dx for the last 5 years so I have alot of questions.I live in Ft.Worth/Dallas area.My doctors are at UT SOUTHWESTERN in Dallas.I would love to talk to someone that has this too.thanks
|
charlotte
9 post s
31-Aug-2006
9:24 AM
|
To Honey47. I live in Tallahassee. I've had LEMS for 26 years. I take the DAP 3,4-Diaminopyridine and Mestinon and IVIG infustions. I'm house bound now, but was ok and able to work for 22 yeas. If you want to chat you can e-mail me at carlota@talweb.com. The DAP is THE med for us, but you can only get it on a compassionate use basis. I get it free from the Mayo Clinic in Jacksonville. Cheers Charlotte
|
