[Ruth Nixon]

Hi Debbie,

I know this is a scary time for you. We have all been there. And it’s hard to get your head around it. However, getting the diagnosis is your first big step. At least you can move on with dealing with LEMS , and finding the right treatment for you personally.  I certainly found that initially I had to deal with one thing at a time, because thinking about everything at once was too overwhelming. I did find that however hard it was to get a diagnosis, it was better hearing that there was a reason for my symptoms, and I wasn’t losing my mind! Take it step by step , little by little, and let your brain take time to take it all in.  And mind yourself.

[Ruth Nixon]

I was given Clarithromycin last year in the Emergency Dept and immediately went into anaphylactic shock. I had to be given two doses of adrenaline to manage it. The doctors and I were unaware that it would cause problems.

[Ruth Nixon]

I have very dry mouth regularly. It generally correlates with how much I push during the day. Also I find caffeine affects it adversely so I try to stay away from it in the evening. I also use the dry mouth toothpaste, mouthwash and they also do a gel which works well to add moisture to the mouth.

[Ruth Nixon]

I would also like to join you on the zoom meeting. I am from Ireland and was diagnosed with LEMS in 2018. I know nobody with LEMS in Ireland so it would be great to catch up.

[Ruth Nixon]

I had been having very bad muscle spasms and cramping. They were proving very debilitating. I had to take to the bed,  I was in such pain with them. No amount of hydrating helped. My neurologist put me on Gabapentin ( Neurostil) and this has really helped with both.

[Ruth Nixon]

I also get alot of consistent severe neck and shoulder pain, and, depending on which Consultant you see on any given day, is either definitely associated with LEMS or has absolutely nothing to do with LEMS! So I’m pleased to hear that I am not the only one. I live in Ireland, and very few people have heard of it, much less know the symptoms or how to deal with it.

[Ruth Nixon]

I just wanted to comment on some of the pre-medication advice you have written about here. I have IVIG infusions every 5 weeks and have suffered from the most crippling light, noise and touch sensitive migraines and vomiting every time for the last 2 1/2 years. This time I tried drinking electrolyte drinks throughout. Oh my word. The difference is phenomenal. I am so thrilled. I barely even have a headache. I am finding so much invaluable advice from this forum. It is making the whole Lambert Eaton journey easier to find out information from people who are going through the same thing. Thanks for sharing your experiences. If has helped do much.

[Ruth Nixon]

I was surprised to hear that there are people with LEMS who do not suffer pain! I thought it came with the territory. I have regular pain and muscle spasms which are treated with daily painkillers. I try to be very aware of the amount I am doing, and funnily enough I gauge when I need to stop and rest by how dry my mouth is. I know that if I push on I will regret it. IVIG really helps with the pain levels too.

[Ruth Nixon]

Hi. I’m very interested in the idea of compression stockings. That is a new one on me. I use a cane for short distances and a rollator for longer. But the thing I could absolutely not do without is a shower seat. I really suffer with heat when I take a shower and my legs get very weak. So it has been a game changer to be able to take a shower comfortably.

[Ruth Nixon]

I was diagnosed in 2018 and so far have met no one with LEMS. I live in Ireland and don’t even know if there’s anyone else in the country with it. The Doctors here have not come across anyone else with it. That’s why this forum is so beneficial.

[Ruth Nixon]

Me too

[Ruth Nixon]

Thanks so much, Dawn. That is already so helpful. I was told 2 years ago that I had LEMS, and have been given little or no information on how to deal with it day to day. However, just in the past few days, since reading your post about stress, I have been taking note of the times of the day when I feel stronger and when I can feel the benefits of the 3 4 Diaminopyridine, and using that time more effectively, and not beating myself up when I have to rest. I can see now, looking back on stressful situations, how much it would have benefited me to know about the effects of stress. Can I just ask, and please don’t feel you have to answer if you’d rather not. You mentioned that you were on Mestinon. Are there any other medications that people with LEMS use to counteract symptoms, other than immunosuppressants or the IVIG treatments? I’m trying to see if the 3 4 Diaminopyridine which I believe is a variation of Firdapse? is the best option, or are there other medications I should be aware of? Any further information would be very helpful.

[Ruth Nixon]

Hi Debbie and Dawn,
Thank you so much for this information. I cannot believe that I have gotten more information over the last few days on this forum about trying to manage LEMS than I have received from any source ( Medical professional or otherwise) since I have received my diagnosis. I have been finding it so frustrating to have times when, like you say Dawn, I have been suddenly unable to lift my legs, when half an hour before I was able to do so!! Sometimes I have felt like I’ve been loosing my mind. I am going to start a food diary right away and monitor those times and see if I can find links. I have already worked out the negative effects of heat but if there are any other triggers, I would be so interested to hear, as this journey so far has been like trying to navigate without a map or compass. Thanks again. So much appreciated.

[Ruth Nixon]

Hi Debbie,
I am not sure if this is the right way to use forums, as I have never used them before, but I was very interested in your comment about magnesium and Dawn’s response about flare ups. Where did you find this information. Are there foods that should be avoided? I find that I have flare ups that I can’t account any reason for, and have been trying to follow a paleo diet, but maybe that’s not the right route to take?

[Ruth Nixon]

Hi Ashley and Debbie,
I’m so amazed by your quick response. Thank you so much. I was diagnosed with LEMS in June 2018. But none of the doctors had ever come across it before. I was started on IVIG – Flebogamma, and have been having a 5 day treatment every 5 weeks since then. I was also started on 3/4 Diaminopyridine ( which sounds like what the forums are calling Firdapse)? I also take immunosuppressants, anti muscle spasming drugs and painkillers, but sometimes I feel like the Consultants are just throwing drugs at it because they don’t know themselves. The IVIG has helped a bit, but I struggle with exhaustion, walking , climbing stairs and expending any amount of energy. At this moment, climbing mountains seems like a million miles away but I’m holding on to that hope. I feel like I’m trying to work it out myself, so it is great to have some insight into it from people in the know. Thank you for your response. It means a lot.

[Ruth Nixon]

My name is Ruth Nixon and I live in Ireland. It’s so good to read what other people are experiencing, as sometimes I feel like I am losing my mind, with the variety of weird symptoms that can change daily. Neither myself, or any of the Consultants I have been dealing with, have come across LEMS. I don’t know of any other cases in Ireland. I read the forums and it’s good to feel that I’m not alone. I feel like such a failure because I have had to give up work due to LEMS, and hiking has been the hardest thing to give up. 2 1/2 years ago I was running marathons and climbing mountains. I would be so interested to hear how you have managed to hike again, Dawn. To get back to that place would be my biggest hope.