Desiree Taliancich
Forum Replies Created
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Hi Ms Ashley! Congratulations on your wonderful marriage! May God bless you and your sacred commitment for many more years to come. I suspect I had LEMS since I was pretty young. I had absent tendon reflexes at my 12 yr old physical but never too much more until the last 10 yrs. Anyway, I had 4 pregnancies and 1 miscarriage of unknown cause. I went in to preterm labor with all of my pregnancies. I was put on bedrest for most of my pregnancy in all 4 cases. I would randomly start to contract and had to receive IV magnesium to stop labor. Then the magnesium lowered by blood pressure so very low. On my 3rd pregnancy I experienced horrific urinary retention, requiring a Foley catheter. Unexplained cause of course but now I know it was LEMS. Now, I experience retention at least a few days a week. Also, I experienced some sort of bowel obstruction during my 4th pregnancy causing absent bowel sounds, constipation, and requiring a nasogastric tube. This resolved randomly. No explanation of cause, now we know it was LEMS. Constipation and delayed gastric emptying is also one of my LEMS expressions. The good new is, I have 4 wonderfully healthy children. Only 1 born slightly preterm but got to home in time with me. I am excited for you and know that by the Grace of God it is going to happen for you, all in His time. Praying for you and all of us LEMS warriors, always!
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Ms Ashley! yes! I get blisters or most often canker sores, approx once monthly and they last about a week. Super duper painful. this last time I purchased Dentemp Canker Cover patches. They absolutely worked! I applied them before bedtime and had almost no pain the next morning then again the following night and they went away very quickly. more than anything, it relieved the pain almost instantly. My sores literally cause pain in my jaw that radiates up the side of my head.
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Ms Ashley!! Congratulations! I am 2 weeks into my SQIG at home and so far it has been amazing! Easy to do, infusion takes 1hr 45min, steady week with no highs then lows right before treatment. I am very pleased thusfar. I use to get terrible headaches with my infusions so I had to avoid bending over, no exercise, no sun, etc. I don’t anticipate having to limit myself at all with SQ treatment. The literature states you should start SQ 1 week after IVIG. I personally did it 5 days after because I wanted to do it on Sundays. I’m not sure I have identified a hard part about the switch. The infusion company we are using is awesome! I just received 1 month of supplies including IG so I’m all set. Please reach out if I can help with anything.
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You got this, Debbie! I’m also a nurse, and so is Ashley! Who better to manage this rare disease than us? You are going to be an incredible advocate for yourself. We’re all here to support eachother! Price’s response is super awesome! I was diagnosed a year and a few months ago but have had symptoms a few years prior, just didnt know what the heck was going on. Once we identify the diagnosis, we are ready to move forward. I still work, and yes, there have been some changes in my energy level but I’m continuing to work around them while i figure it all out. My Scans were all negative so my LEMS is not related to a neoplasm. So it’s part of me now, time to adapt. Please don’t hesitate to reach out any time and find the LEMS FB group. Be aware though, some people post things when they’re struggling, I mean not often to people think to post, “Having a great day today!” Everyone’s journey is different. This is not a death sentence! Push forward, full speed when you can because sometimes LEMS will slow you down. God Bless you! Keep your head up! We’re here if you need anything!
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This is amazing news Ashley! So glad it’s been good so far! I did switch from my initial neuro after they denied my first IVIG, he admitted I was his first LEMS patient, he refused to try Firdapse, and he didn’t know anything more about LEMS than he did the first visit he diagnosed me. My new Neuro is incredible! She has a few LEMS patients and has been spot on with treatment from the beginning. Granted, we had to increase a day of IVIG after a few months because I didn’t experience any improvement but she made the change quickly. And now I’m better and stronger than ever. She listens to everything I say and documents it all with her interventions on her note. She’s kind and very intelligent. I alternate with in person and telehealth visits so I don’t always have to travel.
I’m so excited about you feeling awesome! Please keep us posted -
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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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 autoimmune disease. There is a lot of literature about POTS being autoimmune of course aside from autonomic. I finally got to start IVIG and now a hematologist is also involved for monitoring labs. At my last visit with my Rheum, he started discussing seizing the production of the antibodies so I would not begin to progress to other autoimmune diseases. My wonderful neuro was absolutely on board. She explained that she prefers to treat in a step by step process and since I was having many symptoms, her focus was on symptom control. I have now been started on an immunomodulator in an effort to suppress the production of antibodies all together. She did explain this may take anywhere from 6 months to 1 year. We will see. God willing I’m not going anywhere for a while.
God Bless you and may you get back on the road to some normalcy very soon. -
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 we try for IVIG again. I will keep you posted.
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Hi Ashley!! In addition to IVIG, what else do you take?
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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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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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She actually doubled my dose. So I get 35 grams per day for 2 days. A total of 70grams total every 3 weeks. It’s been working very well. Occasionally, I begin to feel symptoms a few days right before my IVIG but for the most part I do quite well. Plus my Firdapse of course which brings instant help.
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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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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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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 patient. I feel I may need to establish with another neuro in the event the IVIG isn’t as effective as we hope. Scary to read that some don’t respond to it well enough. Besides my autonomic neuropathy, I don’t have any other chronic diseases. Hoping to be able to avoid steroids and the more complicated meds. Hoping I may pick your brain once I get the name and frequency of my IVIG.