susan 1 post 16-Apr-2008 5:23 AM	Hi I have recently been diagnosed with LEMS and have just started ( 3 weeks ago ) on 30 mg of 3,4 DAP a day.Symptoms still just as bad - probably worse actually - but I suppose it will take time for drug to have any effect ( if any )and response depends on individual concerned.Have had CT and MRI scans (nothing of note found ) and due to have PET Scan next week though I suspect no abnormalities will be found. Consultant has suggested steriods which I am not keen on and also plasma exchange but it seems that this will only provide short term alleviation and procedure seems somewhat intrusive. Anyone out there in a similar position? I am v new to this disease and really want to know if a) 3,4 DAP works for anyone b) how long it takes to kick in and c) would I be better off with a larger daily dose ? Also is plasma exchange a good option now bearing in mind I have only just started on DAP. Look forward to hearing from someone out there.
chairman MGA Chairman 739 post s 16-Apr-2008 7:01 AM	Susan LEMS is harder to treat than Myasthenia Gravis, and it may take some time for your neurologist to find the best combination of drugs for you. 3-4 DAP can be dangerous if you do not follow the dose laid down by your doctor, but it works well for many people with LEMS. Your best bet is to be a patient patient (difficult!) and follow his advice. In many cases steroids are literally a life-saver. Have you got the MGA information books (Volume 2 is aimed at people with LEMS)? ---------- Peter Finney MGA Chairman Last Edited on 16-Apr-2008 7:03 AM
Shaz123 8 post s 17-Apr-2008 4:13 AM	Hi Susan, Chairman, Is it my imagination or has more cases of LEMS been diagnosed of late. My father about 6 weeks ago, Steven another member of this forum last week, Susan 3 weeks ago etc. Reading up on LEMS it stated that it was a very rare disease and only affects about 1 in a million, if this is the case we three represent 3 million people???? anyway I am very curious about this, is it that docs are now looking for and diagnosing better or what??? I recall one member of this site saying that he noticed that MG seemed to be affecting very fit people ie people who regulary run and cycle. My own father who is 67 yrs cycled 10 miles a day to and from work up to last November and walked on average 3-5 miles daily with the dog??? makes you think!! Anyway I would be interested to see how many people with LEMS are currently members of this site and when diagnosed. I am not sure if this forum would like a poll like this so if the chairman has no objection it would be great to see and if not perhaps send me an email to sharon.doyle@cso.ie (just as an aside I do work in the Central Statistics Office in Ireland and am interested in stats but this would be purely for my interest) Sharon
Shannon26 33 post s 19-Apr-2008 6:33 PM	I have LEMS, and was diagnosed 2 years ago. I am on 3.4 DAP. I take 80 mg a day. I really don't think 30mg could get you any stronger It is a powerful drug and you need to be careful of seizures and heart problems. I was tested for all of these issues and was fine, so I take 20mg of DAP 4 X a day. It is alot and the side effects are bad....but I deal with it because I need to be string. I have talked to a few other LEMS patients that are only on 50mg a day or 60 mg a day...I am on the highest amount I have heard of, I think. But when I take less, I can barely function. And it wears off at exactly 3.5-4 hours and I still can't move at night when it's worn off. You should talk to your doctor about taking ore...maybe 10mg every 3 hours to get you through your days. Also- you should be taking Mestinon with the DAP - they work together to help your Nerves release the Acetylcholine (DAP) and to help your Muscles Receive it (Mestinon). My Doctor at the MAyo clinic tell me LEMS is so very rare. He actually told me LESS than 1 in a million people have it. But I think it is often Misdiagnosed for MG and other diseases, therefore, there is no real statistic. Either way, it is very rare - we are the chosen few- JOY!!! Let me know if I can help in any other way...but try to get more DAP and use Mestinon with it and you should see a GREAT improvement! Steroids did not work for me, they only made me crazy! Imuran also did not work, so now I am on CellCept, so far, no results, but it may take a year...we'll see! Best Wishes, it is NOT EASY!!! But you are not alone. Oh-The DAP should work immediately. There is no waiting, So- if it is not working for you, you are not taking enough, or maybe your body just isn't responding to it. Again, it worked sooo much better foe me when I took Mestinon with it. Take 1 pill of Mestinon (60mg) 1 hour after my 20mg DAP Doses 4X a day, and 1 Mestinon Timespan Pill (180mg) before bed (doesn't always work because I am pretty much paralyzed at night until I take my DAP in the morning.). Hope this helps! Last Edited on 19-Apr-2008 6:37 PM
chairman MGA Chairman 742 post s 19-Apr-2008 10:17 PM	Susan I know Shannon is trying to be helpful - but I really must advise that you do not try varying your medication without consulting you neurologist. LEMS is difficult to treat SAFELY. In particular the combination of Mestinon and 3-4 DAP is unpredictable and will vary between patients. Unlike Mestinon 3-4 DAP is very dangerous if taken in excess. It can cause seizures if the safe dose is exceeded, and the margin between the effective dose and the safe dose can be small. Steroids also should be introduced carefully and under full medical supervision. Please be careful and work with your doctors to resolve your symptoms. If you think you need to change the dose of any of your medications - discuss it with your neurologist. This will require much patience on your part, and no doubt you will be frustrated on the way, but if you try to rush things you could finish up with something worse than LEMS to deal with. ---------- Peter Finney MGA Chairman Last Edited on 19-Apr-2008 10:29 PM
sally1louiselouise 562 post s 20-Apr-2008 3:03 AM	Shaz, If you go to the Home Page and click on to Site Search and Index, scroll down the page and you will come to Statistics.............you may find what you are looking for there (although it doesn't state how many people are members of this site)........hope this has been of help. ---------- South Wales UK Last Edited on 20-Apr-2008 3:04 AM
Levitas 642 post s 20-Apr-2008 4:10 AM	Sharon (Shaz), You might find this of interest. EPIDEMIOLOGY OF MYASTHENIA GRAVIS http://www.iss.it/binary/neph/cont/Report%20on%20the%20descriptive%20epidemiology%20of%20Myasthenia%20Gravis.1183558284.pdf ---------- Levitas
brucey 14 post s 20-Apr-2008 8:14 AM	Hi, Susan, My name is Steven, I was diagnosed with LEMS 2 weeks ago, before that they thought i had MG. I understand fully what your going through. I have just spent 16 days in hospital and am currently home for 2 days weekend leave, I have to go back tomorrow (Monday). I have had IVIG and am taking x20mg of 3,4 DAP x5 times a day as well as steroids which will build up to 80mg every 2 days by next week, I have had a CT scan which didn't show anything, I am due to have a bronchioscope to look at my lungs on Tuesday and if that is clear I will have a PET scan. I was taking x60mg of mestinon x15 times a day before I went into hospital but wasn't getting any better or worse so I didn't think they were working, it was only when I stopped taking them that I realised they where having some effect, I got twice as bad! I could barely walk and was taking a lot of falls, my consultant wants to see what effect the IVIG and 3,4 DAP will have without the mestinon. I have noticed that after the second DAP in the morning I am walking better but like Shannon26 by night time it seems to wear off. Yesterday morning while I was getting ready to come home from hospital I seemed to be getting worse, I fell over backwards on my crutches and landed flat on my back! (ow) I didn't tell the nurses because I was desperate to go home, I also collapsed when I got home and have hurt my leg and elbow which is making it even more difficult to walk, I am now taking it very easy till I go back in the morning. My consultant says that he will get me back to 80-90% of where I was before but it will take some time to get there, I do believe I will get better in time and you must do the same Susan. I am, like you quite new to this so I am by no means qualified to give any sort of medical advice about what medication or quantity we should be taking, all I know is that I have to follow what the Doctors tell me to do. I hope this post is of some help to you, even if it is just to let you know you are not alone, I will post another when I finish at the hospital. I really hope you begin to feel better soon, and just remember this: you, I and the other people with LEMS are truly one in a million! Best Regards, Steven.
susan 2 post s 21-Apr-2008 5:41 AM	Hi Steve thanks for your message- this is Sue's husband ( also Steve ) replying here as she is v weak and in hospital at the moment awaiting ivig treatment - should have started last week but didn't! Due for resheduled PET scan this Thurs but as ivig takes five days I do not see how can do both this week.Suspect ivig treatment will be postponed again. Sue is also due to have Plasma exchange starting on 2 May.3-4 DAP still not having any positive effects but her dosage is far less than yours.Hopefully ivig and plasma exchange will have some short term benfits. I will tell her to be be positive but as you know too well it is very difficult - I think that she would rather not be one in a million!.Hope that you get some improvement soon.Keep in touch. Steve U
Levitas 643 post s 21-Apr-2008 6:33 AM	Steve, There may be no problem in fitting in the scan and no need to postpone the IVIg. The IVIg shouldn’t take all day. It mustn’t be rushed but shouldn’t take more than about four hours. Plenty of time to fit in the scan I would think. I’m a little puzzled when you say she is to have a plasma exchange so soon after IVIg. I didn’t feel the benefit of IVIg until a week after the treatment and thought that IVIg and Plasma Exchange were alternatives and was not aware that the two would ever be given at so close an interval. Might be worth double-checking, as it’s so easy to misunderstand at such a stressful time. Give Sue best wishes from me and all contributors to the Forum. ---------- Levitas
Shannon26 34 post s 21-Apr-2008 9:59 AM	I definitely agree with the chairman as to having to consult with your doctor. I didn't write that in my message, but I figured it goes without saying. DAP is very dangerous...that's why I had to undergo an EEG, EKG, EMG, etc etc and many more tests to be sure taking 20mg 4X a day is safe for ME. It may not be for others. I know someone else with LEMS who has heart problems, and she is only allowed to take 50mg a day. She is weaker than me as a result, but it's better than having a seizure or a life threatening heart condition. And I did not start on Mestinon with DAP...I waited a year, then Introduced the Mestinon with DAP with permission from my Neuro and it did work much better. IVIG did not work for me, but I was not on DAP yet at the time, so I may try it again. I'm also not sure why you would have IVIG and Plasma exchange so soon between each other. Aren't they suppose do have the same effect? Also- does anybody know if Plasma exchange may have better results for LEMS people than IVIG? My doctor seems to think they are exactly the same, but I think I read the PE may be better for LEMS, not sure. One last note. It's been over 2 years for me and I'm still trying to figure things out. I think I am starting ot get used to my new "normal" but I have never felt the same way I did "pre-LEMS"...not sure I ever will, but I have hope. I would say my muscles are probabaly functioning at about 60% of a normal person, and that's WITH the DAP. Without it, I'm probably only about 10-20% mobile- it's horrible! That's it for me, good luck to all!! Shannon
susan 3 post s 22-Apr-2008 4:56 AM	Levitas / Shannon 26 Thanks for messages - I will pass these on to Sue. She is due to start ivig today.Will let you know how we get on.I will check with her consultant re PE for as you say I also thought these treatments were mutually exclusive. Steve U Last Edited on 22-Apr-2008 4:56 AM
brucey 15 post s 25-Apr-2008 5:44 PM	Hi Steve and Susan, Shannon and all, Steve (Susan's husband) I'm sorry to hear that Susan is very weak and in hospital, I'm home for the weekend again but have got to go back to hospital on Monday morning to start a second course of IVIG (I only had one 2 weeks ago), there hasn't been any real improvement so the consultant wants to start the IVIG again, I am also hoping to get the PET scan some time next week. I had the bronchioscope last week which luckily didn't show anything abnormal. I am now on x5 20mg of 3,4 DAP per day, x3 60mg of mestinon per day and 80mg of predisilone every other day and I'm still really no better, although I do have occasional short periods when I do feel stronger but it doesn't last that long. I hope that the second IVIG will have a more positive effect but I'm starting to worry that none of these treatments are going to work, I am hoping that the steroids (predisilone) will kick in soon, the consultant says that it can take a month or two to start working and that this will be the long term treatment to try and control the LEMS. My tongue and mouth has been tingling for about a week now and I think it is due the DAP, does anyone else have similar sensations I wonder? I'm getting pretty fed up with this LEMS! I will have spent a month in hospital by time I finish this next IVIG and still do not know how long I will have to be there after that. I can't imagine what it will be like having to put up with this for the rest of my life, I go to sleep most nights hoping that when I wake up it will be gone, but of course, it doesn't! I have found though that when I'm depressed the weakness is worse and when I'm happy I'm stronger, maybe the Doctors should prescribe 24hr re-runs of only fools and horses and a tickling stick! ha ha. I hope Susan will get stronger after her IVIG as do I, and I will speak to my consultant about whether he thinks plasma exchange would be more effective than IVIG. I will post another message next weekend and hope that I will have something good to report. Good luck to all, Steven.
Shannon26 36 post s 25-Apr-2008 7:49 PM	Hi Steven- The tingling is most definitely due to the DAP. My entire mouth, throat, face and hands go numb and I get painful pins and needles when exposed to heat or cold, it's awful. You'er taking ALOT of DAP! I take 20mg X4 a day and that's alot. you must get really bad side effects if your taking it 5X a day. But can you move at night when you sleep? Mine wears off by bedtime and I become a vegetable at night. I tried IVIG before I was on DAP and it did not work and I had to pay over $2,000 of pocket. I want to try it or Plasma excange again now that I'm on DAP and see if it works, but it may just be a waste of time and money. It doesn't always work for everybody. Just stay positive. My saying is "LEMS SUCKS" (pardon the language) - and it really does, but it could ayways be worse. I am 33 and some days I just cannot believe I have to live this way forever, but it is what it is, and I'm lucky to have family and friends support me...and people like you and the others to let me know that I'm not alone! Let us know how things go. Good luck! Shannon
brucey 16 post s 26-Apr-2008 5:53 AM	Hi Shannon, Thanks for your post, at the moment I only get the tingling in my mouth and tongue. I think probably the reason I'm taking such a high dose of DAP is because I'm 6'2" and 13 stone. The DAP does seem to wear off at night, although there are occasional nights when I'm better than at any other time but these are far and few between, also in the morning I am at my worst, it is only after the second DAP that I feel any improvement, so it takes till about 11-12 in the morning before I start getting any stronger, but sometimes it doesn't work at all! I figure you live in the states because you said the IVIG cost over 2000 dollars and you had to pay that yourself, now that really does suck! (pardon the language). I suppose I'm really lucky to live in the UK where we have a very good free health service, I can imagine how difficult it must be to not only have to live with LEMS but also worry about having to pay for treatment. I too have a really good family and circle of friends to give support and try and understand what I'm going through. I'm 40, married with two daughters aged 17 and 12. Is just me or does it seem that LEMS seems to affect younger people? you are 33 I'm 40 and I recently met a lady from Wales with LEMS who is only 34, I wonder how old Susan is. I will make another post next weekend when I finish the next course of IVIG and hopefully I will have something good to report. Good luck, and I hope you have a "strong" week. Steven
Shaz123 9 post s 28-Apr-2008 12:39 AM	Hi Steven, Shannon and all, Steven I am delighted you had good news from your bronchospy. You say that you thought LEMS seemed to affect the younger people but my Dad who was diagnosed about 2 months ago is 67yrs, however he has LEMS with small cell lung cancer so maybe there is something in that, as if I recall Yans dad also is around 70 yrs and he also has LEMS with sclc. Its interesting that you have been given a steroid with the 3,4 Dap and Mestinon as my fathers neuro said that people with lems have a very strong immune system and that this is what attacks them, therefore I would have thought using steroids would have boosted the immune system more and that is why immuno-suppressents are used, however cos my dad is have chemo and radiation they are not using immuno-suppressents. Just wondering - could easily have got this all wrong but I do know that he is not using any steroids only the 3,4 Dap x 15mg x3 and the mestinon x 60mg x4.... he is very weak at the moment but he has just finished his 2nd cycle of chemo so that is to be expected. anyway I hope you feel stronger soon, let us know how you got on with IVIG/PE as this is something that my father has not been offered and maybe my dad could ask his neuro about getting this after he has finished his chemo?? regards to all Sharon
Levitas 646 post s 28-Apr-2008 1:04 AM	Sharon, I hope you will forgive me in pointing out that prednisolone steroid is a powerful immune suppressants itself. We tend to call only the steroid sparing drugs immunosuppressants, but this is not quite right. ---------- Levitas
chairman MGA Chairman 746 post s 28-Apr-2008 2:11 AM	Sharon Levitas is quite right. Prednisolone (a steroid) is often the first immuno-suppressive drug given to LEMS patients. It usually enables the disease to be brought under control reasonably quickly. It may be replaced later (partially or completely) by other, slower acting, immuno-suppressive drugs. ---------- Peter Finney MGA Chairman
Shaz123 10 post s 28-Apr-2008 3:56 AM	Thanks Levitas & Mr. Chairman, Still getting to grips with all the meds, I know my Dad wasn't given this either, should he have been on it I wonder? he certainly isn't having a great response at the moment to the 3,4 DAP and Mestinon but I suppose this may be down to the chemo... he is on so many meds between antisickness/anti-nausea tabs, diflucan, mouthwashes etc.etc that it is difficult to say whether I should suggest it to my dad to mention to his neuro?? This seems to be a bit of a learning curve for all involved as the neuro says he has never treated LEMS before but has had experience of MG, however he diagnosed very quickly in fairness. I have to say fair play to you all especially Levitas and Mr. Chairman you really know your stuff, it is great to be able to log onto a site like this put in your query and have someone as knowlegable as yourselves coming back with answers. Thanks for all your help and support over the last few months it has been invaluable to me and my family Sharon
susan 4 post s 29-Apr-2008 8:38 AM	Hi Steven and others Sorry to disappoint but LEMS is not age related ( Sue has just got laptop at home so hopefully she will soon be communicating directly with you all and maybe she might even might divulge her age ! ) Finished IVIG, PET scan all clear,start PE next week. Slight improvement todate but nothing to get excited about. Just wondering if any other long term LEMS sufferers out there who have been through all this? Would be interested to hear your comments. Also whilst I think that Sue's neurologist is v good it is such a rare disease that I am not sure that he has seen too many cases - is there a neurolgist out there somewhere that has detailed knowledge of LEMS ? Steve U Last Edited on 29-Apr-2008 8:39 AM
Shannon26 37 post s 29-Apr-2008 7:15 PM	Not sure where you all are from. But I am from the States, and My Neuro in Connecticut sent me to the Mayo Clinic in Rochester, Minnesota. This is where LEMS was founded in around 1957 (I think). Dr. Lambert and Dr. Eaton were both Neuro's there and came up with the fact that there was a difference between MG and what they found, and they Called it LEMS. If anybody really wants a specialist on LEMS, the Mayo Clinic is the place to be. My Neuro there has treated HUNDREDS of LEMS patients from all over the world!!!! My Neuro here in CT has NEVER seen a case, only MG. So I appreciated that he was humble and he sent me there for the best care. Because it was only THERE that I started improving a little and was put on the correct drugs. Also, both of my Neuros here in CT and at the Mayo both think because I am young, a woman, and have never smoked, that my LEMS is the non-cancer Autoimmune LEMS. The most common type of LEMS occurs is in Males around age 57 who smoke or have smoked and who have SCLC associated with it or get cancer within 1-4 years of LEMS Onset. I am like the rarest LEMS person, young, woman, non-smoker. Gotta love the odds!! Last Edited on 29-Apr-2008 7:21 PM
brucey 17 post s 2-May-2008 4:07 PM	Hi all, I'm glad to report that I've finally been discharged from hospital, I've been there for a month now and I'm glad to be home. I've been feeling better for the last 3 days now and just hope it lasts, I am by no means back to normal but I can walk without the crutches and can walk up the stairs without clinging on to the banister for dear life! My best times seem to be between 11am and 9pm, before and after these times I am still very weak, but still this is the best I've been for about 2 1/2 months. I've just finished my second course of IVIG and I'm now taking 80mg of Prednisolone every 2nd day, x3 60mg of mestinon and x5 20mg of 3,4 DAP daily. I cant work out what seems to be having an effect but I just hope it continues and starts to gets better, I am however getting side effects from the DAP, tingling and numbness in my fingers, lips, tongue and cheeks as well as a strange hyper feeling like I've drank about 30 cups of coffee! I came home today and have had my best day yet, I took the dog for a walk with my daughter, got a shower (standing up!) and was able to get dried and dressed without that much difficulty, if this continues I might even contemplate taking my motorbike around the block in a few days! I know I shouldn't get over excited because LEMS fluctuates from hour to hour and day to day but I am starting think that there maybe some hope that things will improve. I have to go back to the hospital in a month (provided I don't get worse), had the PET scan on Thursday, they should have the results in a or week 2, I just hope I don't get a phone call in the next 2 weeks asking me to go to the hospital because I fear it will be bad news (fingers crossed) I hope that all of you are coping well and are also ok, especially Susan, I hope that she starts to feel a bit better soon. And to answer your question Shannon, I live in the UK and am assuming that Susan does too. I will post another message soon and hope that I still have some positive news to report. Best wishes to all, Steven
Dorothy SI 6 post s 3-May-2008 5:58 PM	I have LEMS since 2005. I was first in the hospital (fist of 3 stays) for weakness and shortness of breath for 16 days and had Plasma Exchange every other day. At that point, I was using a wheelchair. I've had at least 40 exchanges over the past 3 years and three, 5-day, IVIg treatments. Plasma Exchange worked better than IVIg for me. Along with Plasma Exchange, I was taking 55 MG of 3,4 DAP, 200 MG of Imuran, 60 MG of Mestinon 3xs a day and 180 MG Extended Relief Mestinon in the evening. When I left the hospital the first time, I left walking with a cane. I think Imuran and two periods of using prednisone got me even stronger. I still use a cane and have trouble walking distances, but I am stronger now than I was 2 years ago. I’m still very weak when I get up in the morning. It takes about 1-hour after taking my first dose of 3,4 DAP and 60 MG of Mestinon to get me going. It takes a long time for these meds to give back your strength, but it is possible to get there. I stopped Plasma Exchange 5 months ago. Last month, I started to feel like I was going to fall with every step. When my problems first started, I would fall a lot. I would be standing and the next thing I knew, I was on the floor on my back. I always fall backwards. It happens when my knees move a certain way. As I'm falling, I have no muscle strength to brace my fall. I can fall if someone taps into me every so slightly. I just started taking Solu-Medrol and it has worked better than Plasma Exchange or IVIg ever did. I spend most of my days resting. Yesterday, I had my second 1-hour infusion and for the first time in three years, I woke up wanting to clean my whole house! This is something my wonderful, caring husband has been doing since I got sick. Instead of cleaning my house, I went out to our garden and pruned some plants. My husband was so excited to see me on my feet, not losing my balance and doing something that I couldn’t do for the past 3 years that he took about a million pictures. Anyone with LEMS should talk to their doctor about Solu-Medrol. The Mayo Clinic probably has the largest number of doctors who treat LEMS patients. I'm lucky enough to live in New York City. I have three Neurologists in charge of my case. Thankfully, they speak to each other if one feels that my treatment needs to be altered. One doctor is a consultant from the Mayo Clinic. If anyone lives in the New York area and can't make the trip to the Mayo Clinic, you may want to get a second opinion from either Dr. Samuel Rapoport or Dr. Michael Rubin. Both are associated with New York Presbyterian Hospital. Good Luck to all.
chairman MGA Chairman 755 post s 4-May-2008 2:40 AM	In case anyone is wondering - Solu-Medrol is a proprietary name for Methylprednisolone. This is a steroid which has much the same properties (including side-effects) as prednisone and prednisolone. According to the FDA it has the advantage of causing less water/fluid retension than prednisone and prednisolone. ---------- Peter Finney MGA Chairman
susan 5 post s 18-May-2008 7:52 AM	Hi everyone Susan here,not Steve for a change! Am home for w/e before returing later today for more plasmapheresis. Only improvement so far is return of saliva - haven't had any since January, but no improvement with legs,swallowing, chewing, eyesight,exhaustion, etc. In fact only things working well are my feet,so was good to read Dorothy's post in particular. STEVE how was yr PET scan, am getting anxious for you as no recent message. EVERYONE I am 57 so obviously LEMS does affect younger people (and only good looking ones!) Hopeflly back home again next weekend, so look forward to hearing from you all,reading messages from all of u has really helped me.one week I was leading a normal life, 5 dyas later couldn't even walk to work let alone get to matches at West Ham or cricket at the Oval or even get into the garden via the 2 really insignificant steps down, even reading is difficult with my "distorted" vsion after about 5 pages and newspapers too large and unwieldy for me to hold. S xx
brucey 18 post s 20-May-2008 5:54 PM	Hi Susan and All, Sorry for not posting sooner, I have been up and down since my last posting when I was discharged from hospital. The first 4 or 5 days I felt a lot stronger but then the weakness came back followed by about a week or so of really bad depression which made me feel even weaker, I think that coming home from hospital to the "real world" has been difficult for me to cope with and adjust to, unable to work, bills mounting up, feeling useless and stuck in the house most of the time, although I did get a nice tan sitting in the garden for hours on end while it was hot (cant be all that bad then ! ha ha) I got the results from the pet scan and it was clear thank god. The really bizarre thing about the results of the scan was this, when I got them when I was feeling really low and if I'm honest I was feeling almost suicidal trying to come to terms with putting up with this for the rest of my life. So while I had lots of friends and family really pleased and happy for me about the results I felt on some level almost secretly disappointed (I deeply regret thinking that way now) I had this weird idea that if I did have cancer and they could treat it I would have a good chance of getting rid of the LEMS for good and if they couldn't treat it then I wouldn't have to put up with this for the rest of my life, either way it would out of my hands. I feel really bad about thinking that way now as I have 2 beautiful daughters and wife that really love me (so stop feeling sorry for yourself Steven and get on with it!). I have now realised that it will take me quite a while to come to terms with LEMS and there are quite a few processes I must go through until I reach a point of acceptance. On a more positive note though, I have been feeling a lot stronger again for about the last 3-4 days, I don't know about the rest of you but I have definitely noticed the effect that negative stress and thinking has on my strength, when I'm depressed I'm weak and when I'm positive and happy I'm stronger, I am starting to believe that thinking positive (difficult I know) is even more powerful then DAP, IVIG and Predislone put together! Today is the best I've felt in a while, I've done some weeding in the garden, bounced on the trampoline (about 3 or 4 bounces!) I've been walking better (without the crutches) and......... I took my motorbike out for about 15 mins around the block (and was OK on it) although Vicki is not pleased about it to say the least! I read Susan's post and am sad to hear that there hasn't been much improvement with the symptoms except for the dry mouth, and the fact that your still in hospital really saddens me, I really really hope that things start to improve for you soon. I know everyone's different and people respond differently to the treatments but for me the first signs of improvement came when the dry mouth went away, I just hope that it will be the same for you Susan. I'm sorry for the extra long post but once I start writing I cant seem to stop, maybe I can find a new career in writing! I'll post another message next week, good luck to all of you. And one final word, like Susan, I have found the messages posted on this site a really big help to me, even if its just knowing that there are other people going through a similar experience. I sincerely hope that everyone who has contributed to this posting is and will feel better soon. Steven.
carlota 34 post s 22-May-2008 9:35 AM	Hello This is Charlotte in Tallahassee and I've had LEMS for 28 years, and so I might as well throw in my 2 cents. I was concerned when Brucey said he was taking 60mg of Mestinon 15 times a day. One of the side effects of Mestinon is WEAKNESS. I've never heard of anyone taking so much. Maybe a misprint. Also, when he said he was a large man, that could account for a larger dose of the DAP. I'm a 5'2" woman and I take 10mg every 3 hours or as needed. Truth be told I actually take a 10mg tab and a tiny bite of another tab. I take a tiny bite of mestion with it normally. When Brucy mentioned stress I have to ditto that. Good stress or bad stress will leave you in a puddle on the floor. Seeing relatives that I hadn't seen for years reduced me to an almost speecless state. A bad stressor does the same thing. My first symptoms were in Feb 1980 the year I turned 36. My LEMS was confirmed by Dr. Lambert at the Rochester Clinic. I was put on Prednisone at the same time and told to continue the Mestinon, because whatever Acetocholine gets into the junction will be helped across the junction by the Mestinon. I was also surprised to hear of the IVIG and Plama Exchange being done at virtually the same time. It is usually one or the other. I had the IVIG last year maybe 6 times. They cannot get the "product" over here. I'm on a wait list for some IVIG now. The nurses at the hospital tell me that Plasma exchange is used with MG a lot and some folks have a permanent portal and they come in every few weeks for an exchange. Wowsy. I have been told that I am "living on Borrowed time". That I am not supposed to be alive. I have gone on line numerous times to various medical websites and was told that they have never heard of long term LEMS. I cannot tell you how often I have been told to consult my local Neurologist. I try to get information from various sources and they just say "ask your local Doc". I think that in addition to the hypocratic oath, doctors take a final course in "How Not to Tell Patients Anything." At least tell them as little as you possibly can. Asking a question of my local doc is like trying to get a seat on the space shuttle. And would someone tell me what a STONE is in Pounds? I watch BBC America all the time. I got the DAP in 2000 I think and my doc there filmed the process for her medical students. Lovely. I get the DAP free from Mayo Clinc/Jax and I plan to move there this year to be close to the Clinc and to live in an Independent Living facility. I will feel safer in a residential facility rather alone in case I fall or something. One last thing about LEMS. It effects the thighs and the "Pelvic Girdle" mostly. I have to keep my knees locked at all times. An Australian Shepherd dog nudged me in the back of my knee joint and I went down. If my knees buckle, I go down - usually on my knee caps. Cheers all
Levitas 664 post s 22-May-2008 12:11 PM	Charlotte, In 1352 - reign of Edward III A statute of this year established the stone as 14lb - a value it has kept ever since. (I thought everbody new that!) ---------- Levitas Last Edited on 22-May-2008 2:36 PM
MartinL 3 post s 23-May-2008 9:59 AM	Hi everyone, Martin here - can anyone give an update on the Dr Lechin treatment and is there anyone out there who has tried it? Are there any doctors here in the UK who would follow his methods? Has anyone with LEMS been treated yet?Any recent info appreciated. Thanks
susan 7 post s 24-May-2008 3:24 AM	Hi everyone Susan back home again for w/e back to hsop on Mond for more plasmaphersis.have exhasted my puny arm veins and femoral line so am told "we will be using the jugular vein" - can't wait. Ditto Steve and the depressive thoughts I know it is best to take one day at the time but this really is not easy. The wonderful and very knowledgeful ( wouldn't u just know that she will be leaving on July 11) nurse practitioner in charge of my plasmapheresis has warned me that I should expect a temporary relapse shortly after plasma finishes as although most of antibodies will have been removed the memory cells remain and will panic reproduce madly for a while. So maybe this happened to you Steve? I am beginning to feel stronger now, enough to persuade my consultnat to increase my DAP from 30 to 40mg DAP per day and maybe 50mg on a bad day. Also start prednisolone next week -every other day thanks to my reading of volumes 2 & 5 - thanks Chairman, and probably azathioprine if blood test is OK. Unlike Steve I don't have a motorbike but electic wheelchair (max speed 5mph which seemed pretty scary to me when I tried it) due to arrive soon so hopefully will feel strong enough to attempt a "turn round the block" although I need to put in print that I don't intend to be needing it for much longer. Hope everyone has a really good week and Martin will ask my iknowlegeable nurse for you Sxx
MartinL 4 post s 24-May-2008 9:41 AM	Hi Susan, Nice that you've got the w/end off. I hope it all goes well when you go back on Monday. Thanks for yr offer of asking your nurse practitioner about the Dr Lechin thing. Having read some of his papers, it really sounds like a viable option to me, and well worth following up unless someone can tell us why it doesnt or wont work. I know that he has concentrated on MG patients as opposed to LEMS (and thats probably because he got MG himself and treated himself successfully) but the similarities must be sufficient to warrant further investigation and/or trial. Good luck for the hospital session next week. Martin.
MartinL 5 post s 31-May-2008 9:34 AM	Message for MGA Chairman Mr Finney. Would it be possible to obtain a contact for Wendy Wakefield, Sussex as I would like to ask her about her experience with Dr Lechin. If thats not permissable could you email her and ask if she would be good enough to contact me if she feels happy to do so? Your assistance appreciated. Rgds Martin
chairman MGA Chairman 763 post s 31-May-2008 12:57 PM	Does she post to this Forum - if so, what is her login name? Alternatively - is she a member of MGA? ---------- Peter Finney MGA Chairman
Dorothy SI 7 post s 31-May-2008 4:51 PM	Hi Susan! How is the plasma exchange working for you? You mentioned that you were going to start Azathioprine if your blood is okay. It takes about 6 mths to a year to work if it's going to work for you. I can remember the day it started to work for me. It was the first time I didn't feel sick inside all the time. It took about a year, but it made a big difference in my quality of life. Good luck!
brucey 19 post s 1-Jun-2008 6:38 PM	Hi All, Hope everyone is feeling OK, especially Susan, i haven't seen any recent posts from you and just hope that your alright and that maybe the meds are starting to work. I had my appointment with the consultant on Friday, now that it looks like I'm in the clear regarding the risk of cancer he is starting me on Azathioprine as from Monday (tomorrow) i start on 50mg a day for the first week and then increase it weekly by 50mg until i reach 200mg after 4 weeks, like Dorothy said, the consultant also says that it will take many months for the Azathioprine to work and if it does they will start to reduce the Predislone, i just hope it does work. In response to Carlota, i was taking around x15 60mg tablets of mestinon (roughly 1 an hour) before i went into hospital at the beginning of April, interestingly though you said that one the side effects of mestinon with LEMS is weakness. When i was taking that dose i didn't think they where having any effect because i wasn't getting any better or worse, but i was taken off them when i was admitted to hospital and within 1 day i was about 2 or 3 times weaker then i had ever been and was falling over about 3 or 4 times a day and could barely move. I am now taking x5 60mg per day with the DAP. I have been feeling better for the last week or so, I'm not much stronger and still have good and bad days but in my head I'm feeling much better and i have more confidence that long term things will improve. I am hoping that long term i will be able to work again, having LEMS has been nothing short of financial catastrophe for me, i am still waiting to hear if i will receive DLA or any other benefits. I keep thinking about a saying that my grandmother always used to say "so long as you've got your health!" its only now that something like this has actually happened to me that i realise just how true her words were. I hope your all OK and i look forward to reading your posts. Best regards and good luck, Steve. Last Edited on 2-Jun-2008 12:15 AM
MartinL 6 post s 3-Jun-2008 5:41 AM	Hi Mr Finney, I was sure she had posted but I've searched and cant find anything apart from reference to a web site www.myasthenia.co.uk/wendy.htm (Page 12 of the forum)and when I tried accessing it, it didnt work. I also feel sure that I had seen a letter from her in one of the MGA newsletters - there was some contoversy going on about the Lechin treatment from someone in France but again, I cant lay my hands on it. Sorry to have bothered you but I thought it might have struck a chord. Rgds Martin.
Shaz123 12 post s 4-Jun-2008 7:35 AM	Hi All, Just thought I would share a little bit of good news as you may or may not have been aware my dad was diagnosed with LEMS back in Feb/Mar. He was also diagnosed with small cell lung cancer. He has been through 3 cycles of chemo and is presently going through his (hopefully) last cycle, he had a scan last week and the docs say that the chemo is working and his cancer has shrunk, they are very pleased and are anxious to get the radiation treatment underway and do a final scan when this is finished. Obviously they will be doing regular scans and there is always a chance that the cancer will come back (in fact they say will probably come back) but for now the immediate future looks better. He has become alot stronger and can manage somedays without his cane, they hope when all treatment is finished that the LEMS itself may go into remission and he could be back to his old self. Thanks to everyone for all their support and I will keep you posted on his condition. Best wishes to all Sharon
susan 8 post s 11-Jun-2008 7:53 AM	Important stuff first SHAZZA so pleased for both your father and you. Pls pass on congrats to him,really good to have positive news. I have been home from hospital for 1 1/2 weeks, did attempt to post a mssge last w/e but managed to lose it - probably a good job as it was quite woe is me. I am a bit stronger, can stand for a little while and even totter 11 steps before I grab my trusty zimmer frame (but curiously only forwards, can't go sideways and backwards even sounds scary).but still so exhausted most of the time. Paired off 10 socks and that just wiped me out for the rest of the day, very much hoping things will improve soon. HATE the word positive so on a more realistic level, has anyone investigated a vertical thru floor lift? Have a couple of reps coming round next week. Also my conslt agreed I can have up to 50mg DAP per day - ideas on best eway to take them please, ie used to have 10mg 6am (2 hrs to kick in before strong enough to leave bed, wash dress etc) 12 noon and 6pm - would i be better to spread times out so 5 10mg doses or perhaps take 20 first thing and then spread the rest? Has anyone managed to return to work or regularly go up and down stairs under their own steam? Really tired now, so please keep in touch everyone S
Shaz123 13 post s 12-Jun-2008 2:08 AM	Thanks Susan for your good wishes but I think I spoke too soon, my Dad is back in hospital, his blood pressure keeps dropping when he stands and he had a blackout on Monday last and fell although thankfully he didn't hurt himself. They did a brain scan to check that the cancer hadn't travelled and that came back fine. They are pretty sure this latest set back is to do with his LEMS rather than his chemo so hopefully he won't be in too long, as he was doing so well. His Dap was increased about 2 weeks ago to 50mg also which he takes 15mg at 8am, 20mg at 1pm and 15mg at 6pm, he personally didn't notice any real difference although neuro said to take the extra strength one at lunchtime as it is the afternoon that he gets more tired and weak. Anyway will keep you posted Sharon
MartinL 7 post s 12-Jun-2008 6:29 AM	Hi All, Interesting to read the various posts - ref Brucey and others, about how our condition varies according to how streessed or not we are. If you read the documentation on Dr Lechin's neuropharmacological approach to treatment of auto-immune diseases, it seems to have a direct relationship with the various categories of stress in patients. The success he has had is amazing and I find it difficult to understand why so little attention is being given to his treatment protocols. Can someone out there let us know why it isnt worth pursuing.. I've been in touch with him and he is willing to treat me but at the moment I'm not strong enough to travel out to Venezuela. Iwould love to find someone following his principles here in the UK or Europe. Best wishes Martin
oscar 1 post 12-Jun-2008 10:07 AM	Hi, I was diagnosed with LEMS a year ago and I am on Mestinon 60 mg every 4 hours day and night plus 150 mg imuran a day. I come from South Africa, Johannesburg where we have excellent private health care but the problem I have is pain! I get serious pain in the hips when I stand for a while or when I have been sitting and need to get up. I also get pain in my hands. Does anybody else have this problem - my neurologist does not think it is caused by the LEMS but my Rheumatologist is equally adamant that I do not have rheumatoid arthritis! I am a 55 year old male and this is really getting me down. Fortunately I have been able to go back to work on a part-time basis and do not seem to have as many problems as some of you have, for which I am grateful. But I really need to know if anybody has an answer for the pain. many thanks Oscar
MartinL 8 post s 13-Jun-2008 6:43 AM	Hi Oscar, To take a wild guess, how about nerve root pain from lower back region manifesting itself in your upper thigh muscles -Maybe core muscle weakness doesnt help your spine and this might affect the nerve roots. Dont know why pain in your hands but I can sympathise with you on the muscle pain which I also have, including back of the thighs and down legs from sciatic nerve. Are you in the UK or still in SA? Rgds Martin.
oscar 2 post s 15-Jun-2008 8:23 AM	Hi Martin, many thanks for the suggestion - I do have a lower back problem but this has been ruled out as the cause of the pain by an orthopaedic specialist. this pain is mainly deep in the buttock area and is different to the LEMS weakness. I guess this is something I will just have to live with and not try and guess the cause. regards Oscar
janlyons29 8 post s 18-Jun-2008 12:43 PM	I was diagnosed in 2000, and currently take either 80 or 90 3/4DAP, plus 60mg mestinon 4 times daily. Included in that is one 3/4DAP in the middle of the night so I can get out of bed in the morning. Maybe heavy for some, but I have a very high tolerance to drugs. I tried the steriods for 2 days and absolute HATED them ( and I don't even remember now why). Kevin Parsons, MD did something on either 60 minutes or dateline a while ago and welcomes questions. His email is kparsons53@yahoo.com
janlyons29 9 post s 19-Jun-2008 6:44 AM	charlotte - I can't figure out this board to know if I can send you a message, or even where to find your email addy. would you please email me janlyons@charter.net Since you seem to have had it longest I would like to ask you a couple questions.
brucey 20 post s 1-Jul-2008 7:49 AM	Hi All, Hope your all feeling OK. I go back to hospital tomorrow (wed) for another course of IVIG, I had been doing OK until about 10 days ago when the weakness started getting worse, I'm now stumbling around again and have had a few falls. Consultant thinks it may the IVIG wearing off, the last time I had it was 7 or 8 weeks ago, but they did say it only lasts for 6 to 8 weeks. I'm taking that many different tabs that I don't what is working and what isn't. I'm currently taking x4 50mg Azathrioprine, x5 60mg Mestinon, x5 20mg DAP daily and 90mg Prednisolone every other day. I had been walking reasonably well a couple of weeks ago although not very far (about 50 meters) but now I'm really struggling again, I fell to my knees off the patio step yesterday with a cup of coffee in my hand (tried to drink it on the way down- no such luck ha ha) this LEMS is that ridiculous I ended up covered in coffee and laughing at myself on the floor, I still cant believe that I've gone from running 30-40 miles a week 6 mths ago to falling off a tiny step. I read Susan's last post about timings of tabs and going back to work (hope your feeling better). I'm on a different dose to you but this how I take them: 6am 20mg DAP and 60mg Mestinon then the same at 10am, 2pm, 6pm and 10pm, I find that if I start at 6am by 11am after the 2nd dose I able to start functioning, but I am very weak in the mornings and better through the afternoon. I have not managed to go back to work yet but when I was stronger a couple of weeks ago I was managing the stairs better, I could go up down holding the banister with one hand. A question to anyone taking Azathrioprine, does anyone else feel really sick about an hour or two after taking them, I have been feeling sick like I'm going to throw up and have to lie down, this has been happening for about the last week or so. I'm feeling a bit sick right now so I'm going to finish this and have a lie down, I hope everyone else here is doing OK and I look forward to reading your posts. Take care, Steve. Last Edited on 1-Jul-2008 7:56 AM
TonyEvans 2 post s 4-Jul-2008 1:30 PM	Hi all just thought I would post my experiences with LEMS was diagnosed around 13 years ago at the age of 22 I am now 35. My local hospital could not find out what was wrong with me ( I had been in and out of hospital for a year)and so finally sent me to see Prof Newsom-davies up at Oxford he sat me down and told me that I was suffering from LEMS, he said he could tell this just by the way I walked into his office. Seven days later had me into hospital started me on my drugs and had a plasma exchange. The drugs I take now are 100mg DAP daily 5x20mg, 150mg azathioprine daily and 55mg of prednisolone every other day. What I will say to those who are just starting thier drugs and not feeling the full effects of them I have a pretty bad case and it took me nearly 2 years to feel the full effects of the steroids and the azathioprine now I have my good days and my bad days on a bad day I can hardly walk on a good day you can hardly tell there is something wrong with me although I have never been able to return to work. To Brucey as I said above been taking azathioprine for 13 years now have never had the the side effect of feeling ill but I do have brown patches over my body varying in size from a 50p piece on my arms to as big as my hand on my chest and stomach Tony Last Edited on 4-Jul-2008 1:37 PM
Kris 4 post s 4-Jul-2008 8:12 PM	Hi Martin - just read your message above re. Dr Lechin. I live in New Zealand, and have also been in contact with Dr Lechin, as well as with two other people (from Spain and Canada) who are undergoing treatment with him. I'm considering travelling to see him. I'd be happy to share information with you if you're interested. Best Wishes, Kristy
Mariah 1 post 5-Jul-2008 9:24 AM	Hello.wow this is interesting and exciting to come across other LEMS people!!,it's nice to know others exist.I have been reading all the messages etc and obviously I want to join in.I am a happily married lady aged 54 and 1month old !! My husband brought me a laptop for my birthday ,hence able to contribute my little bit.I was diagnosed with lems 3 years ago after 18mths of Dr's and consultants not knowing what my illness was?I was in the end sent to a Prof in London ,where for the first time ,I had the eletro test ,where I had all these doctors appear from no where and watch as they all looked at each other and said 'are you thinking what Im thinking' and they all said together 'LEMS' ,and the Prof told me I had a very rare condition only 200 in the country .So lems was diagnosed ,there was various talks how I could be treated etc and reading about various treatments available too, it was decided I needed to have a pet scan and to be started on DAPS (100mg) a day ,this was delayed for a further six weeks because my local consultant totally ignored letter from London ,so back to London I went!!I had a cat scan to see if there were any tumours and THANK GOD there wasnt ,but I havent had a pet scan to this day hmm!I started taking DAPS(5 daily) and i obviously noticed an improvment but still quite sluggish ,fatiaged ,but hey a lot better then i was ,so I wa thankfull.I have always been in the past very active ,so it was something I had to come to terms with ,like walking,cycling, mainly.I have a tricycle now and it's brill I get the exercise in different ways now ,walking I take my time and lean on my husband and friends alot!!,and most of all my faith I'm a christian and that is my help and strength at my lowest times.Anyway back to the DAPS ( I take 40mg a day now )and where I was seeing consultant in London every six months now he dosent want to see me for a year ,so I have improved a great deal ,but he was interested when I told him that I had started on thyroxine and liothyronine(t3)only small dosage though ,but I notice a difference definetly b4 and after,so I didnt have to go on steroids,which I had been fighting mainly due to the fact I have osteoporsis, anyway I truly believe whatever is thrown at you in life it can make you a better or bitter person,the only difference is the 'I'.I will sign off here because I could go on and on but await interaction - all my love.
brucey 21 post s 5-Jul-2008 5:16 PM	Hi Tony, Mariah and All Thanks for your posts. I am really glad that you have posted messages, I am new to LEMS (only diagnosed in April) my consultant says that I have quite a bad case of LEMS (like Tony) although I am a bit better than I was a couple of months ago but have recently got really weak again, I fell over yesterday and the day before in the hospital corridor while on my way for my IVIG and I'm starting to think that I'm going backwards in terms of my symptoms. I must add though that my symptoms don't seem as bad as Susans who was diagnosed around the same time as myself. Because you both have had LEMS for such a long time I'm hoping you might be able to tell me what to expect, I know each person is different but when you said Tony "I have my good days and my bad days on a bad day I can hardly walk on a good day you can hardly tell there is something wrong with me although I have never been able to return to work" it sounded very much like me over the last couple of months. I probably have 101 questions I would like to ask you both and anyone else who has been living with LEMS for a long time. but I will only ask a few, if you or anyone else has the time to reply I would be really grateful. Here I go, Does it get better or does it get worse over the years, are there bad times and good times to come? I'm worried that as I get older I will get weaker. When I get a hot bath or shower I get weaker, does anyone think that this principle also applies in hot weather. We always go to hot countries on holidays (even though I have very little money now to go on holiday through being unable to work) which leads me to my next question. I am (was) a joiner working on building sites which is quite physical, at the moment I am just to weak to return to work (but live in hope). You (Tony) said that it could take 2 years for the meds to work, was there a great improvement when they started to work. I have read a lot about Prednislone and its effects, mainly weight gain, I have been taking 90mg on alternate days for the last 3 1/2 months, I lost 1 1/2 stone before I started on the Preds but I put this down to muscle wastage because I used to run 30-40 miles a week, but I've lost another 1/2 stone since starting the Preds. I've got this mad thought that maybe if a person had cancer could they be losing weight and gaining weight at the same time, does everyone gain weight on steroids? Are you or anybody else able to do any exercise, I am desperate to build my muscles up again, I really loved running but it is impossible at the moment, I wonder if there any exercises that people with LEMS can manage to do to maintain their muscle tone and general fitness I've tried cycling but only managed about a 1/2 mile before I couldn't pedal anymore. I don't think I'll ever be able to come to terms with LEMS, family and friends keep telling me to rest and take it easy but I cant, I'm just not the kind of person who can tolerate long periods of sitting around doing nothing, I have to keep myself busy even if this means stumbling around and falling over (otherwise I'll go mad) Do you or anyone else think that you should do what you can when you can until you have to rest. What about driving? I can still drive and even managed to ride my motorbike a couple times on good days (safely I may add) but I'm terrified that I'm going to lose my license. Are there people with LEMS who are still driving and if so do they have any restrictions on their licenses. After having IVIG I feel weaker, it seemed to take about 2 weeks last time until I started to feel stronger, is this normal? I'm still cant believe that this has really happened to me, I go to bed at night hoping that when I wake up it will all of been just a bad dream- but of course it doesn't! Sometimes I imagine a million people standing in a field and someone throwing a ball into the air and I manage to catch it, mad I know but I'm forever having these strange thoughts. My experience of diagnosis was very like yours Mariah except for one difference, I already knew I had LEMS, I was first diagnosed with MG but after reading about it realised that my symptoms fitted almost perfectly with LEMS, like you after I had the EMG test two doctors were looking really excited and surprised at the results, I said to both of them "I bet your talking about a thing called LEMS and your going to start me on drug called 3-4 DAP", you can imagine the looks on their faces. My biggest problems are my legs followed by my arms and hands, when I'm having a good day I walk normally but cannot walk very far or run, when I'm having a bad day I walk with my knees locked and my balance is all over the place, I've found the most the difficult thing to do is walk down steps, it is hard to walk up them but coming down is the worst, my knees tend to buckle and I collapse in a heap , luckily I haven't really hurt myself (yet!). I am still better than I was a couple of months ago though, back then I was going up down the stairs on my backside and really dread going back to that. That is why I'm so interested to know what other peoples long term experiences are with LEMS, mainly does it or can it get worse. I would really appreciate anyone's advice on their experiences of living with LEMS long term, I could really do with speaking to someone too, if anyone is willing to speak over the phone I would pay the call charges but could only realistically do this within the UK because of the cost. You can get my email address from my profile, I don't want to make anyone feel obliged to help me out so just posting a message on this site would be great. I'm going to sign off now before I start rambling, I look forward to reading your posts. Take care all, Steven Last Edited on 5-Jul-2008 5:22 PM