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LEMS zoom meetings are returning!
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 again! 🙂
I’m thinking we can stick to the same schedule we had previously, but we want to schedule meetings at a time that works for most of you.
How does Tuesday afternoon, July 19th work for everyone, 5pm EST?
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34 Replies
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July 12th at 5 PM works for me.
David
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A mi el 12 de julio me viene bien
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@pricewool Compañeros. Hay un zoom el dia 19 a las 5 de la tarde. Tengo una duda importante, los que somos españoles y no entendemos inglés hay algun modo de traducción. Vais a poner los chats de modo que podamos traducir esta esperada reunión. Gracias, espero vuestras respuestas. Un abrazo,
Translation: Companions. There is a zoom on the 19th at 5 pm. I have an important doubt, those of us who are Spanish and do not understand English, is there any way of translation. You are going to put the chats so that we can translate this long-awaited meeting. Thank you, I await your answers. A hug,
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Lo sentimos, no contamos con ningún servicio de traducción durante estos eventos en vivo.
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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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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 trained in pulmonary and critical care medicine. Onward to more recovery from home.
David
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Bueno, tambien me acomodo al dia 19, por mi bien.
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Translated via google translate:
Well, I also settle for the 19th, for my own good.
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@luciag
¡Fantástico! ¡Nos vemos entonces!
@dpmitnick
Perfect, see you then! So sorry to hear you have been struggling so much lately! Glad you were able to come home and recover. How are you feeling now?
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Thank you Ashley. I had infusion today and again tomorrow. Retaining extra fluid because of recovery from pneumonia. Life is improving overall.
David
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Thank you Ashley. I had infusion today and again tomorrow. Retaining extra fluid because of recovery from pneumonia. Life is improving overall.
David
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Hi David-
@dpmitnick
Checking in! How are you feeling?
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Finally feeling better. Still having Home Health PT and get winded whenever I do my exercises or can get out in walk. The cough is gone, my O2 sats are normal and I am not grey looking! 🙂
Thanks for checking on me.
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Pues regular nada más. Cada vez tengo más momentos de debilidad y este fin de semana he tenido momentos angustiosos. Perdi el conocimiento comiendo y según mi marido hice algunas cosas de andar y darme con muebles, cosas de las que no me acuerdo absolutamente nada. Hablé contigo de las convulsiones y epilepsias y me comentaste que podrían ser provocadas por el firdase. Esta semana intentaré hablar con el neurólogo a ver si es que he vuelto a las crisis. Estoy unas horas relativamente despierta con dificultades pero si no descanso no aguanto ningun ritmo y tiendo a desmayarme. Me pasa comiendo, viendo la tele, leyendo… cada vez tengo momentos más grandes de desconexion.
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These seem like quite significant events. I hope you will see your doctor soon to find the cause. Firdapse in high doses does have a caution statement about seizures.
Estos parecen eventos bastante significativos. Espero que vea a su médico pronto para encontrar la causa. Firdapse en dosis altas tiene una declaración de precaución sobre las convulsiones.(Well, regulate nothing else. I have more and more moments of weakness and this weekend I have had harrowing moments. I lost consciousness eating and according to my husband I did some things of walking and hitting furniture, things that I remember absolutely nothing about. I talked to you about seizures and epilepsies and you told me that they could be caused by firdase. This week I will try to speak with the neurologist to see if I have returned to the crises. I am relatively awake for a few hours with difficulties but if I don’t rest I can’t stand any rhythm and I tend to pass out. It happens to me eating, watching TV, reading… every time I have bigger moments of disconnection.)
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These seem like quite significant events. I hope you will see your doctor soon to find the cause. Firdapse in high doses does have a caution statement about seizures.
Estos parecen eventos bastante significativos. Espero que vea a su médico pronto para encontrar la causa. Firdapse en dosis altas tiene una declaración de precaución sobre las convulsiones.(Well, regulate nothing else. I have more and more moments of weakness and this weekend I have had harrowing moments. I lost consciousness eating and according to my husband I did some things of walking and hitting furniture, things that I remember absolutely nothing about. I talked to you about seizures and epilepsies and you told me that they could be caused by firdase. This week I will try to speak with the neurologist to see if I have returned to the crises. I am relatively awake for a few hours with difficulties but if I don’t rest I can’t stand any rhythm and I tend to pass out. It happens to me eating, watching TV, reading… every time I have bigger moments of disconnection.)
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Hi @luciag
¿Pudo ver a su médico con respecto a sus desmayos? ¿Todavía tienes estos? Por lo general, si tiene una convulsión, su cuerpo se convulsiona y si su esposo estuviera allí, él podría decirle si esto sucede cuando se desmaya. Siento que estés pasando por eso y tengas tantos problemas. Por favor mantengannos al tantoWere you able to see your doctor regarding your blackouts? Are you still having these?
Usually, if you have a seizure your body convulses and if your husband was there, he could tell you if this happens when you black out.
I’m sorry you are going through that and having so many problems.
PLease keep us updated!
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Muchas gracias por preguntarme…
Hola. Pues lo hablé con el neurólogo y me dijo que él iba a contactar con una neurologa que se llama Beatriz, experta en epilepsia, y que hace años me trató. Es época de verano y a lo mejor se dilata mas la cita pero estoy esperando para ver su opinión y si me hace una monotorización para encajar la medicacion otra vez. Por lo demás, los dolores de columna se deben a un osteofito.. que son:
los espolones óseos son protuberancias óseas que aparecen a lo largo de los bordes de los huesos. Los espolones óseos (osteofitos), a menudo, se forman donde los huesos se unen unos con otros, en las articulaciones. También pueden formarse en los huesos de la columna vertebral. y éstos aplastan nervios a la altura de la lumbar 2 con lo cual, cada vez que los nervios se aplastan por inflamacion, el dolor es muy intenso.
A ver qué me dicen. Os lo cuento.Translation: Thank you very much for asking me…
Hello. Well, I talked about it with the neurologist and he told me that he was going to contact a neurologist named Beatriz, an expert in epilepsy, and who treated me years ago. It’s summer time and maybe the appointment will be longer but I’m waiting to see your opinion and if you do a monitoring to fit the medication again. For the rest, spinal pain is due to an osteophyte… which are:
Bone spurs are bony protrusions that appear along the edges of bones. Bone spurs (osteophytes) often form where bones meet each other, at joints. They can also form in the bones of the spine. and these crush nerves at the level of the lumbar 2 with which, every time the nerves are crushed by inflammation, the pain is very intense.
To see what they tell me. I tell you.
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I would love to join in. Tues afternoon at 5 works for me. I might be just a tad late but I would love to join in.
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I would love to join in. Tues afternoon at 5 works for me. I might be just a tad late but I would love to join in.
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@michm7270
We look forward to seeing you next week!
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Yes, I am available on the 19th at 5 pm ET, thank you for organizing! best, Deborah
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@lemsdiscussion
Glad to be able to bring these back finally! See you next week!
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Yes, I am available on the 19th at 5 pm ET, thank you for organizing. best, Deborah
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Hello everyone! I would love to join. I may be a few minutes late getting out of work but will log on!
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I will sure try to log in!!!
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@deztali1980
Great! Looking forward to seeing you next week!
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7/19 at 5:00 works for me
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@alan-stone
Perfect! See you then!
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Hey everyone!
I will post the zoom link for the meeting next week on tuesday morning in this thread! Looking forward to seeing you all then! 🙂
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I am looking forward to this meeting!! Thank you.
Dianne
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Great! We will see you there!
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<p style=”text-align: left;”>Hi everyone!</p>
Unfortunately, I will not be able to join you today for the Zoom meeting.My days start very early on Tuesdays and Wednesdays (5 AM) , so by 11 PM (European Time) I will not only be out of Firdapse, but literally out of order;)
I really want to thank Ashley and Price, not only for organizing this meeting, but especially for all their contributions to the blog and their very useful tips and tricks. You guys help me a lot, as I don’t know any other LEMS patient in Switzerland. I also like to thank Lori for her always very interesting column.
I wish you all a great meeting today and hope to be able to join you next time!
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Thank you for all the good words and thoughts. We hope you can join us next month!
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That’s today at 2 pacific? If so I would love to join, tho I can only stay on for a few minutes
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That is correct, 2 PM Pacific. We’ll greet you and you can leave when you need to.
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