What topics would you like to see more of?

[dhm]

Hello,

Would anyone recommend a beach trip for a LEMS patient?

Another topic which may have been discussed before my diagnosis is about foods to avoid and foods that may build muscles.

Thank you any info.

[price-wooldridge]

I would think anyone, including me a LEMS patient too, would enjoy a trip to the beach! My only caveat is traveling can not only offer excitement and fun, but also perhaps a little stress. My advice would be to watch activity levels and pace yourself.
I’m not a fitness trainer, but I do know good quality protein in the diet is helpful building muscle. Pair that with some good resistance training, and expect better muscle tone, strength, and mass.

[Ashley]

Hey

@dhmc

I definitely enjoy a beach day! My suggestion is that the heat can exacerbate LEMS causing more muscle weakness or autonomic symptoms, so try to stay cool! I have a beach umbrella I always bring with me! You can also get a handheld fan to bring, and they have some fancy ones that also mist water! Make sure to stay hydrated and drink your electrolytes too!

[dhm]

Thank you Ashley and Price for the quick replies of useful info. I’ve decided I’ll go in the girls beach trip and definitely pace myself and listen to my body.
Do you have any tips for conversations with your neurologist? I write down my questions but there is never enough time to discuss another topic that might be sparked by his reply. Is 30 minutes the standard appt.  with this professional?
how is it determined if PT or aqua therapy is needed ?
Price I know you have talked about your medication routine. I am taking Firdapse and Mestinon ( generic) but how does one determine if this is as good as it gets? I have tweaked it some but still don’t know what level of relief is acceptable. How would you describe a flare up? Thank you! I appreciate you both answering my questions.

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[price-wooldridge]

@dhmc thanks for the kind words! @ashleygregory757 and I try to be as responsive as possible.
I too write down questions and notes before seeing my neuro. I make sure I cover everything on my list, as she’s ready to push me out of the room at 30 minutes. And I’m a talker, so I have to be careful.
What’s the right amount of meds? I think we each answer that ourselves. We’ll never be perfect with LEMS. But do I feel pretty good most of the time? Do I rarely flare up? How disabled am I? These are the questions to ask yourself. Also it’s good to know where your dose is compared to the maximum dose. Perhaps there is room to increase the dosage. Are there other treatment options I could try? It all comes down to feeling as good as possible, as often as possible.
And finally a flare to me, is the quick onset of crushing fatigue.
I hope these comments help!

[Ashley]

Hey @dhmc

No problem! We are so happy to help you! I hope you enjoy the beach trip!

My neurologist currently only meets with me once a year and it’s usually about a 30 min. appointment, however my LEMS is pretty stable and most of my issues stem from my other autoimmune diseases. I think @pricewool ‘s neuro meets with him about every 3 months.

I think determining is up to your neurologist and you to decide. If you’re struggling to get around and complete necessary daily activities, PT might benefit you.

It is hard to tell when you are at the “as good as it gets part” and I don’t have a specific scientific method for you. For me, my goal was to get as close as I could to how I functioned pre-LEMS diagnosis. Sometimes it’s a trial and error basis to see if you can get an added improvement, but you never know until you try!

[mark-j-cafiso]

I was diagnosed in April 2018. For the most part, I’ve just had the typical leg weakness, severe constipation, fatigue.

In the past month or so, I’ve started having the arm/shoulder weakness along with severe pain in my shoulders.

I’ve also had elevated heart rate w/ 2 trips to the ER, random chest pain, ear pain, and the last couple days, foot pain where I can hardly walk.

I guess I’d like to hear if other are having similar symptoms, or are these random pains unrelated to LEMS.

Thanks!!

 

[price-wooldridge]

@mcafiso From the list of symptoms you note I’ve had many of them, though not all. I can say yes to, hip and leg weakness, constipation, fatigue, neck and shoulder weakness. I do associate these with LEMS. I’ve not had pain in my feet, and my shoulder pain has only been associated with muscle weakness.
I certainly don’t have any expertise to say whether other symptoms you are experiencing are or aren’t LEMS associated. I hope this helps.

[mark-j-cafiso]

Thank you for you reply, Price. I see my neurologist soon, hopefully, he’ll have some insights! Take care!

 

[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.

[price-wooldridge]

@ruth no you are not alone! We are so rare it’s easy to be overlooked or not understood. Of all my weaknesses, the neck weakness bothers me the most. Fortunately, in my case, it’s been infrequent and transient. I’m still at odds with my neurologist that my shoulder weakness is LEMS. Ultimately, I’m the patient with LEMS, so I know what it is.