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LUCIA and
Sandra Günther are now friends 15 hours, 43 minutes ago
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Kevin Schaefer replied to the topic LEMS zoom meetings are returning! in the forum LEMS Community Zoom Socials 20 hours, 23 minutes ago
Translated via google translate:
Well, I also settle for the 19th, for my own good.
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LUCIA replied to the topic LEMS zoom meetings are returning! in the forum LEMS Community Zoom Socials 1 day, 3 hours ago
Bueno, tambien me acomodo al dia 19, por mi bien.
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LUCIA replied to the topic LEMS zoom meetings are returning! in the forum LEMS Community Zoom Socials 1 day, 3 hours ago
A mi el 12 de julio me viene bien
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David1949 replied to the topic Combating Heat Intolerance With LEMS in the forum Living With LEMS 2 days, 15 hours ago
I too suffer from heat intolerance with LEMS. I had the heat intolerance before I was diagnosed with LEMS. I remember telling my neurologist at the time about living in air conditioning and horrible sweating if I exerted any energy in the heat. This was part of his referral to the autonomic nervous system lab that was just the beginning of 7…[Read more]
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David1949 replied to the topic LEMS zoom meetings are returning! in the forum LEMS Community Zoom Socials 2 days, 15 hours ago
Ashley,
The 19th works for me! Thank you for trying to accommodate. I just got released from hospital with pneumonia.
LEMS and pneumonia are not a pretty pair. 5 days later and lots of IV antibiotics and steroids, and hard work from Respiratory Therapist, and a loving spouse got me through. I was under the care of an amazing hospitalist who is…[Read more]
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Price Wooldridge replied to the topic Getting a "Divorce" From Your Neurologist in the forum General Questions and Topics 4 days, 12 hours ago
@dpmitnick I think that’s a good way to find a neuromuscular specialist. In my area The UT Southwestern Neurology clinic has neuromuscular neurologists. The one I’m trying to leave practices there 3 days a week. I’d like to hope that the VA can send me out for someone.
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Ashley Gregory replied to the topic LEMS zoom meetings are returning! in the forum LEMS Community Zoom Socials 4 days, 22 hours ago
Hey @dpmitnick
@Pricewool had to schedule an appointment on the 12th, so we need to reschedule to the 19th. Will that work for you?
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David1949 replied to the topic Getting a "Divorce" From Your Neurologist in the forum General Questions and Topics 5 days, 11 hours ago
I think the key is getting a referral to a doctor affiliated with an Autonomic Nervous System Lab. I was fortunate that my neurologist was part of the Neurology Department at a large teaching hospital that had such a lab and doctor who specialized in autonomic nervous system diagnoses. He has since closed up shop and moved to the Cleveland Clinic.…[Read more]
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Price Wooldridge started the topic Statin Drugs and LEMS, Be Cautious in the forum General Questions and Topics 5 days, 15 hours ago
Last week a LEMS friend sent me information on a topic we have discussed previously: statins.
Statins are a class of drugs very popular to treat high cholesterol and triglycerides (hyperlipidemia). It is also known to have heart attack and stroke protective effects.That’s all good, right! Not so fast. There are some known unwanted side e…[Read more]
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David1949 replied to the topic LEMS zoom meetings are returning! in the forum LEMS Community Zoom Socials 5 days, 15 hours ago
July 12th at 5 PM works for me.
David
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Price Wooldridge replied to the topic Getting a "Divorce" From Your Neurologist in the forum General Questions and Topics 6 days, 21 hours ago
You are welcome! That would upset me if I felt I were being dismissed or marginalized. I’ve heard comments like this before. I hope you will continue to advocate for yourself and get the attention you need and expect from a good medical practice.
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Price Wooldridge replied to the topic Getting a "Divorce" From Your Neurologist in the forum General Questions and Topics 6 days, 21 hours ago
I’m learning doctor patient relationships when there is a rare disorder involved can be difficult. It is frustrating if you don’t feel you’ve got other options. I filed my grievance in the VA weeks ago. Interestingly it goes to the department head of the clinic where the problematic doctor practices for a solution. So far they’ve done nothing…[Read more]
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Ashley Gregory replied to the topic “Weighing the pros and cons of Mestinon” for LEMS in the forum Diagnosed- What now? 6 days, 22 hours ago
@specialk70
Thanks for that tip! I didn’t try taking Imodium when I trialed Mestinon but that might be something I try in the future! -
Ashley Gregory started the topic LEMS zoom meetings are returning! in the forum LEMS Community Zoom Socials 6 days, 23 hours ago
Good morning, all! I have some exciting news to share with you all!
@Pricewool and I got the go ahead to resume our Zoom meetings next month!
We are both so excited to reconnect with those that attended these before and can’t wait to welcome our new members to join us as well!
It will be nice to see everyone’s face aga…[Read more]
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Mary replied to the topic Getting a "Divorce" From Your Neurologist in the forum General Questions and Topics 1 week ago
Oh boy! Sorry the communication is poor but what you said came right of my diary. He does everything by the book so i really need him. He is the only dr in our area. Im thankful but frustrated.
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Alan replied to the topic Getting a "Divorce" From Your Neurologist in the forum General Questions and Topics 1 week ago
After reading everyone’s posts and replies, I am discouraged and inspired. Reading about everyone’s experiences with their doctors is very insightful and eye-opening. It seems I am also at a crossroad with my Neurologist. Her eagerness to get to a diagnosis has abated and I find myself waiting weeks for tests she wants me to get and even longer…[Read more]
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Lynn Hankins Ritchie became a registered member 1 week ago
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Hey Lynn!
Welcome to the Lambert-Eaton News forums @lynnsong !
My co-moderator @pricewool and I are so happy you have joined our community!We have members from all over the world with LEMS and have a ton of information to offer! I saw you are still waiting for an official diagnosis, but had N-type antibodies. I have N-type antibodies as…[Read more]
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John Connelly became a registered member 1 week ago
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Hey John!
Welcome to the Lambert-Eaton News forums @john !
My co-moderator @pricewool and I are so happy you have joined our community!We have members from all over the world with LEMS and have a ton of information to offer! I saw you were newly diagnosed with LEMS! @Pricewool and I are here to answer any questions you might have and help you…[Read more]
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Price Wooldridge replied to the topic Rituximab and COVID-19 Vaccine Response in Autoimmune Diseases in the forum Rituximab (Rituxan) 1 week, 3 days ago
To me this is very exciting that your doctor is curious enough to run these antibodies tests. Please keep us informed as you gain more knowledge from them!
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