@deztali1980
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Desiree Taliancich replied to the topic Seeing a New Neurologist in the forum Diagnosed- What now? 3 weeks, 4 days ago
I have been started on Azathioprine or Imuran. I’m giving myself a few days to adjust to the added mestinon then will start it.
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LUCIA and
Desiree Taliancich are now friends 3 weeks, 5 days ago -
Desiree Taliancich replied to the topic Seeing a New Neurologist in the forum Diagnosed- What now? 4 weeks ago
Ms Ashley, I’m so sorry to hear that your condition has been uncontrolled here for a while but I’m so very glad that you have found a new neurologist. I’m hoping that they can tweak what needs to be tweaked very quickly. Regarding adding a Rheumatologist to your team, I have to completely agree. Mine has been a part since I showed symptoms of au…[Read more]
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Desiree Taliancich replied to the topic IVIG Getting Approval, Easy or Hard? in the forum IVIg and Plasmapheresis 3 months, 1 week ago
Hi Ashley! I heard the podcast and was surprised to hear that one of the symptoms you experienced at the beginning was acid reflux. This was outside of your norm. Has this improved since starting your IVIg? Also, do you take any other meds in addition to IVIg?
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Desiree Taliancich replied to the topic IVIG Getting Approval, Easy or Hard? in the forum IVIg and Plasmapheresis 3 months, 4 weeks ago
As I have advised you in the last, Blue cross denied my authorization. They are recommending other meds to start instead and I receive plasmapheresis once monthly, 2 sessions 1 day apart. This does not seem to be enough. Unfortunately, LEMS has begun affecting my swallowing, voice, and worse with bladder function. I see Mayo neuro tomorrow. Hoping…[Read more]
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Desiree Taliancich replied to the topic IVIG Brand Comparison Chart in the forum IVIg and Plasmapheresis 3 months, 4 weeks ago
Hi Ashley!! In addition to IVIG, what else do you take?
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Desiree Taliancich replied to the topic Happy Valentine's Day My LEMS Friends! in the forum Living With LEMS 4 months, 1 week ago
Happy Valentines Day, Price! You continue to pay it forward. Thank you for all you do for us. Your guidance is priceless. God Bless you always! Stay warm!
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Desiree Taliancich and
Ashley Gregory are now friends 6 months, 3 weeks ago -
Desiree Taliancich replied to the topic LEMS and Immunosuppression in the forum Immunosuppression 7 months, 1 week ago
Hello Price! I just got home from 2 consecutive days of plasmapheresis. This was my very first treatment ever. I was diagnosed about 2 weeks ago. My insurance has stalled with approving my IVIG and my autonomic symptoms became pretty terrible so we opted for this “quick fix”. Now onto IVIG hopefully in a few weeks. I am my Neuro’s only LEMS patie…[Read more]
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Desiree Taliancich posted a new activity comment 7 months, 2 weeks ago
Thank you so much for the reassurance that all will be at least better with IVIG. I live in Brownsville, Texas. I’m so sorry I missed the zoom meeting today, I worked until 6ish. What brand of the IVIG has worked the best for you? Do you recommend a porta cath or peripheral IVs will work well? Do you take any oral medications? I’m so sorry to bom…[Read more]
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Desiree Taliancich posted a new activity comment 7 months, 2 weeks ago
Thank you so much for the welcome! So amazing that you’re an RN. I often say, “If anyone can live with and manage this chronic disease, it’s me.” I just recently got diagnosed. 6 yrs ago I had an abrupt dysmotility of my colon, in needed emergency surgery, underwent a hemicolectomy then a total Colectomy. Patho of the gut was normal. We lived w…[Read more]
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@deztali1980
No problem! It is cool to know a fellow nurse with LEMS! I’m so sorry you had to go through all of that to get your diagnosis. All of those sound like LEMS symptoms and autonomic neuropathy is quite common with LEMS unfortunately. Most of my symptoms are and were related to my autonomic neuropathy which was pretty severe at the point…[Read more]-
Thank you so much for the reassurance that all will be at least better with IVIG. I live in Brownsville, Texas. I’m so sorry I missed the zoom meeting today, I worked until 6ish. What brand of the IVIG has worked the best for you? Do you recommend a porta cath or peripheral IVs will work well? Do you take any oral medications? I’m so sorry to bom…[Read more]
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Desiree Taliancich replied to the topic Doing Things When You Have LEMS in the forum Living With LEMS 7 months, 3 weeks ago
You got this, Price! 1 day and event at a time. No ones days are promised. Every day is a new opportunity to appreciate the beauty of life. Don’t let the weekend pass without a few pics I hope you will share. I live in Texas and the weather is perfect today and will be this weekend. Enjoy!
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Desiree Taliancich changed their profile picture 7 months, 3 weeks ago
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Desiree Taliancich became a registered member 7 months, 3 weeks ago
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Hey Desiree!
Welcome to the Lambert-Eaton News forums @deztali1980!
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 would love to hear more about your experience! I am a Registered Nurse with LEMS!
Please take a moment…[Read more]
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Thank you so much for the welcome! So amazing that you’re an RN. I often say, “If anyone can live with and manage this chronic disease, it’s me.” I just recently got diagnosed. 6 yrs ago I had an abrupt dysmotility of my colon, in needed emergency surgery, underwent a hemicolectomy then a total Colectomy. Patho of the gut was normal. We lived w…[Read more]
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@deztali1980
No problem! It is cool to know a fellow nurse with LEMS! I’m so sorry you had to go through all of that to get your diagnosis. All of those sound like LEMS symptoms and autonomic neuropathy is quite common with LEMS unfortunately. Most of my symptoms are and were related to my autonomic neuropathy which was pretty severe at the point…[Read more]-
Thank you so much for the reassurance that all will be at least better with IVIG. I live in Brownsville, Texas. I’m so sorry I missed the zoom meeting today, I worked until 6ish. What brand of the IVIG has worked the best for you? Do you recommend a porta cath or peripheral IVs will work well? Do you take any oral medications? I’m so sorry to bom…[Read more]
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