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I introduce myself, from Argentina
Hello! Thank you for being part of this community.
I was diagnosed with LEMS 2 months ago. But it’s been 7 years since the symptoms started. Having this diagnosis gives me a little light, because until now I didn’t know what I had. I am Argentine, I don’t speak English. So I use Google Translate to write this.
I am 43 years old, I am a mother of 3 boys, and it is a great challenge every day of my life to organize my time, and my effort, to be able to carry out all the activities of the house and family, dealing with the limitations of this disease. .
I am using Mestinon, and I will do the first infusion of Rituximab, at the end of February. My neurologist says he needed 3-4 diaminopyridine, but he is not entering my country.
I read in some forum, that you may see some opportunity to try some medication. I would like more information about it.
I am not working outside the home, my physical limitations do not allow it, and that makes me sad sometimes.
I ask, can you drive a car on the road? I’m not doing it, I’m afraid I’ll get a cramp or not react in time. On the street in my city, I do it. It is a small city, with little movement, so I can still take my children to school.
Thank you and strength to all.
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6 Replies
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Welcome, Caro! Thanks for joining.
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Hello Caro
Im American but i live in Germany and like Argentina medical cannabis is legal! It is all ive been using for almost 3 yrs.! I cannot take Firdapse or 3.4 Dap due to it giving me convulsions. Also bad reaction to IVIG so i decided to try it and so far so good. I still have flares and minor problems but ive been back to work as a service engineer for machines for over 2 yrs. I fly alot walk alot. Im probably 70% of my former self but ill be 58 yrs. Old so i quess im doing good! I think we have talked before on Facebook. Its difficult but its possible. If you need any advice feel free to ask. Good luck Brian Herres
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Thank you! What a joy to read you.
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Sorry i cant answer directly. Restricted for some reason. Cannabis can help heal and protect the nervous system. Google Google Google! Lots of info available but alot is buried. Research!!! It saved my butt! Unfortunately its a life long commitment. If i stop i go down hill quickly. Its not a miracle and works in small steps but it can work! I coached Jennifer Jeanne Kim and she has surpassed me! She couldnt walk hardly at all and now shes over 10,000 steps a day!
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Thank you. Have a nice day
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Hi Caro,
I use Firdapse daily, monthly IVIG and rituximaub 2x per year. All improvements are very slow. I have improved immensely since my first 2 years of diagnosis. I still have lems symptoms but they are not so severe. I can travel now, back to driving, walking and feel better overall. I would also try to get the monthly IVIG. See if it works but give it time, the effects are not immediate, it can take a few months and can or will slowly continue to improve. I am always very slowly improving. It is unfortunate that Firdapse is not available in Argentina. Please let me know if there is anything else I could help with. Carol
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