Price Wooldridge
Forum Replies Created
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Just to update, my neurologist has approved my getting a port for IVIG. I read this in my notes and last week was called by a nurse in neurology to inform me. I’m waiting now for any contact on this from Interventional Radiology where the referral was sent. Re-reading your comments, Ashley, I will be interested to see if a surgeon can be found for the procedure and what their experience may be. Surely, in a large facility like the Dallas VA Medical System, the procedure must be performed with at least some regularity. I have also reviewed your previous notes regarding the surgery and and prep to discuss with the anesthesiologist.
Tomorrow I have a meeting with my neuro and will also discuss the possibility of moving to sub-q since the port procedure is not scheduled yet, and I’m hoping sub-q is still on the table. Honestly, it would be my preferred route. We will see. I have IVIG scheduled for this coming Wednesday/Thursday, so nothing will be in place for this round.
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Ashley, my only caveat to The Office is Carroll’s character is so absolutely incorrect in every way possible, I could only watch one episode at a time. His behavior is difficult to watch at best. After watching a couple of seasons, it’s easier to become invested in the rest of the great characters in the ensemble, hence much easier to binge.
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Dawn, I knew it was leaving Netflix at the end of the year, so started binging it early. Oh, and I forgot to mention “The Office”. I’m still working through that one. The doc on Aaron Hernandez is well worth your time and a tragic story.
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It’s great to hear your story, Ashley! You have overcome so much. Thanks for sharing!
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I LOVE this topic! I’ve just started “The Outsider” on HBO, a multi-part series based on a Steven King story. Creepy!
The holidays were a bit bumpy for me, so I spent several months binging through all 10 seasons of “FRIENDS”. The writing is a bit uneven, but a great ensemble cast. I also just binged through all 7 seasons of “VEEP” on HBO. You gotta be an adult to watch this one. Profanely funny.
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Ashley, Thanks for your insight on Corlanor, and your thoughts on a beta blocker. I too am very careful to not offer “medical advice” on social media, because we each have such a unique set of issues, meds, etc. I have never felt my beta blocker was an issue with my LEMS, and I’m currently on 12.5 mg BID, half the dose I’ve been on some time ago. And as you mentioned, one has to weigh the benefit vs risks. I will discuss beta and calcium blockers with my neurologist in a couple of weeks. And, I’m also under the care of cardiology so we should make informed decisions soon on BP and my arrhythmia. Thanks for your feedback!
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Interesting to hear your autonomic nervous system issues, Ashley. I have had a few sinus tachycardia episodes which have pushed me to the ER over the years. I always chalked it up to the ANS run amuck. Now, with an arrhythmia in the picture, it muddies the cause somewhat as things complicate. I’m curious about controlling that excessive HR you report. Blood pressure is an issue for me and I’ve been on a beta blocker for years to hold my rate down. I understand now, beta and calcium channel blockers are contraindicated for LEMS. You mention Propranolol and Corlanor to control rate. Do I need to consider one of these, in your opinion? My BP’s are running high and we will need to address this soon with a med change.
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Great information Ashley. Thank you. I’ve been put on the vent several times for procedures, but all prior to having the LEMS diagnosis (though it was present). Waking back up in recovery has been a bit rugged, but not horrible. I’ve taken notes on your comments and will have them to discuss with the anesthesiologist in advance.
I appreciate the comments on post op challenges too. I have Zofran pushed into my IV prior to infusions due to nausea, so I’m familiar with that. It works well for me. Again, I’ve taken notes on the issues for the next day.
if I think of anything else! I’ll post. Thanks again! -
Dermatitis Herpetiformis, or DH. This is an autoimmune condition resulting in external reactions on the skin. It is associated with gluten sensitivity, a celiac disorder. I feel like a slacker with only one other known autoimmune issue.
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Hey there Ashley! Wow! Full time nurse. I don’t know how you do it, but keep it up!
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Carmen, my dose is 90 grams, given over two days, 45 each day. My infusions take about three and a half hours each. Each infusion starts slow with about 4 steps up in infusion rate. We’re all different, but just as a point of reference, I pre-load Tylenol and Benadryl. Also, because of bouts of nausea, I get an anti nausea med through the IV before we start.
A couple of other things, I consider myself a “pro” at entertaining myself during these long infusions. I bring my iPad, iPhone, and headphones, to go along with the TV in my infusion room. Because I’m a celiac, I also bring GF bars, in addition to plenty of water and an insulated bottle. Pamper yourself! -
Hi Carmen! Welcome to the wonderful world of IVIG. As background, I do 90 grams immunoglobulin every 4 weeks, over two days. To answer your original question, yes I’ve found it takes a number of infusions to get to a happier place, that lasts the 4 weeks to your next infusion. I’ve felt like I continued to improve, and at 6 months, feel I’m getting pretty good effect into that fourth week. And I also believe the goodness can vary dose to dose. Whether it’s me going into differently, or the variability of pooled antibodies, I can’t say. I hope you can get on a good schedule and begin to build up to a good, therapeutic level.
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Welcome to the forum! As Dawn said, that’s great news that you have a good doctor!
To answer your question on my first treatment plan, we started with Mestinon (brand name). I immediately found it helpful, but not the end all. The second treatment added was IVIG (immunoglobulin). Big improvement, but again not the end all. Third drug added was Firdapse (amifampridine). Another big boost. I’m not sure this would have been the order had Firdapse been FDA approved at the time. I suspect the order would have been Mestinon, Firdapse, then IVIG. I hope this gives you a glimpse into my LEMS treatment plan. We’re all different, dealing with different accompanying issues. -
I’m 70, have LEMS, and sleep is always an adventure. Sometimes it’s great, sometimes not at all. I’ve been on CPAP for many, many years. LEMS very definitely can be a factor. I could never count the times I go to bed slammed from a LEMS crash. Given your report, I’d definitely see a pulmonologist who can assess your need for a sleep study. There is a manner of support, including CPAP to assist and support.
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Well, I’d like to think that the same applies to me. A smoking history, and with several non-cancer related lung issues over the past few years, I can’t be so comfortable to let CT scanning slide. Thanks!
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Thanks Dawn. Well, if our theory that my LEMS started in 2009, then we are 10 years out. The diagnosis was given in January 2017, so I’m just at 2 years out from diagnosis. To me this seems like, if I did get cancer, it would most likely not be LEMS related.
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Good luck Dawn!