Dawn DeBois
Forum Replies Created
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Thanks @lisa! It’s fun to do “top of mind” member profiles and not worry about editors!! 😉
It’s nice to see you in The Forums, too!
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@romylb,
Everyone needs to know what an amazing advocate, friend, Mama, daughter, wife, and kick a** LEMS patient you are….The list goes on. I can’t wait till things start to open up because I miss you bunches. We are long overdo for laughing our way through the halls of whatever convention or meeting we are at!
When you have a link to one of your amazing videos, please share here, too!
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@pricewool,
We are SO LUCKY to have you reading the Lambert-Eaton News flash briefings.
Everyone should hook up their Alexa devices to read them automatically by simply saying “Alexa, read my news.” If anyone would like to know how to set up the skill, let us know!
I couldn’t agree more with how great Brian Murphy, PH.D’s new articles are for our page as well. There are lots of aspects to the disease that can be difficult to talk about. I hope his column’s initiate more discussions among patients and their loved ones, possibly in the forums as well! Also, I have some great content to link back to in my column. I’ve just completed my first month back and am ready to get back to writing weekly starting for October!
It’s amazing to see how much our Lambert-Eaton News has grown in just over a year! I’m happy to have everyone here! It’s a great group!!
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Hi @jennyc,
Welcome to the Forums. We all understand the difficult part of getting a diagnosis such as LEMS but the concern for cancer that goes along with it. I went decades with every other reason given for my weakness, increasing numbness and deteriorating vision other than LEMS. Many of us that have been diagnosed become very active in the LEMS community for more awareness so that patients don’t get put off, like you did.
My vision improved greatly after getting on treatment, I’m very fortunate. I’m even able to wear contacts about 75% of the time after a 10 year break from them due to dry eyes!
Good luck with the cancer screenings. They are worrisome; but, one thing that LEMS does do for about 60% of LEMS patients is it gives doctors a clue that cancer is there long before you would show signs yourself….this often leads to better outcomes if it is cancer. I am friends with a LEMS patient who had small cell lung cancer and is doing great now. There are also other LEMS patients whose LEMS led to other forms of cancer diagnosis’ and they are doing good these days. We are here for you and there is a Forum I created for patients who do get a cancer diagnosis along with their LEMS. Please keep us posted.
Being the Dallas area, you are at a benefit of having neurologists with more experience with LEMS than most others in the nation. Texas for some reason has one of the highest LEMS rates per capita.. I personally know and have met 4 LEMS patients from Texas….one being @pricewool, who is active in our forums. He lives just outside of Dallas!
Hang in there, this is the second toughest part of having LEMS. The first being getting the diagnosis. Your eye doctor was amazing! An eye doctor is oftentimes the first “regular doc” to look for LEMS or MG due to the vision issues they see. I have to give kudos to all of them!
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Thanks for all of the info you have shared. I’m glad the Lambert-Eaton News has been helpful for you. Like @pricewool and @ashleygregory757, I’ve had lots of experience with IVIG as well. IVIG definitely helped hugely in managing my LEMS symptoms. I described more about that in my column: IVIG is a Key to My Success with LEMS. The 3 week success window is very common, and that’s due to the 21 day half-life of the product. Many LEMS and MG patients feel that drop and some even change to having their infusions every 3rd week because of it.
I had a very difficult time getting IV pokes, but I refused to keep the IV catheter in overnight because the product is just too tough on the veins because it is very thick and infuses over a long period of time. My veins would blow the next day before the next infusion was complete so I would deal with difficult pokes for each day of infusing.
This past January I opted to switch to subcutaneous infusions that I can do at home on my own. It was either that or get a port; and my side effect profile was pretty drastic so my highs and lows on IVIG were extreme. I was ready to try for something with an easier side effect profile and I haven’t been disappointed! I’ve had great success on Hizentra and have written a couple of columns about that.
I have 12 More Days a Month Thanks to Subcutaneous Treatment
and
Reflecting on My First Month on Hizentra
Doing the autoimmune dosing via sub cutaneous treatment is relatively new (it was originally indicated for primary immunodeficiency patients) so getting insurance approval can be tricky. However, I’m not the first LEMS patient I know that has gone the SubQ route and there are more that have recently started- so it is catching on.
In October I’ll be doing a follow up column in regards to how Hizentra has been for me and managing my LEMS. I recently had another VGCC antibody test done and in order to get a clear result, it had to be 6 weeks after my last treatment. In order to get a true result for an EMG 6 weeks post IVIG is also recommended.
Good luck with all of your testing and looking for answers. Unfortunately, once you have one autoimmune disease, others like to join the club. However, you’ve found a great source of support here in our Forums and we are happy to have you with us!
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Let’s see, my 3 things for Thankful Tuesday are:
1) I’m thankful my LEMS symptoms are managed right now with minimal meds. More about that to come soon in my column!
2) Like you, @ashleygregory757, I’m so thankful for all my fur babies silly antics and constant companionship during these isolating times. I’m honestly not sure how anyone without pets is making it through these challenging times. Thankfully adoptions at rescues and humane societies are up because people are realizing what great companions pets are.
3) I’m thankful that a spoonful of peanut butter qualifies as a protein on nights that I simply don’t have the energy or desire to cook or clean. 😉
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Hi @ashleygregory757,
Great questions! The last flu shot I had, several years ago, I became really sick and still got each virus that was going around the call center I was working at. My PCP and neurologist are ok with me not getting the flu shot due to how sick it made me. We also feel that the antibodies I’m getting from my immunoglubulin g treatments (now Hizentra), have been very beneficial. If I worked in the healthcare industry like you do, I’m sure I’d have to give it another look.
As far as the COVID vaccine- I do not intend to get the very first one they rush through. I want to see the results from people who do get it, over the long term. Understanding the background of how pharmaceuticals need to go through many levels of trials prior to approval, it’s a bit disconcerting for me to hear all of the talk from the White House about how “soon” we will have a vaccine. I do not like politics getting involved with and influencing science- not one bit. I’m not injecting my body with something that a politician is pushing for a re-election bid anymore than I’m putting one of their signs on my lawn.
Speaking of COVID- I had my first COVID nasal swab done today. I’ve had a sore throat, stuffy nose and now a headache for most of the week. Because of the sore throat and stuffy nose, I couldn’t go to PT for my concussion rehab and can’t return to PT until either a negative COVID test or 14 days after these cold symptoms disappear. I don’t want to lose ground on how PT has helped me so my PCP set me up for the test. It was uncomfortable but worth it. It will be interesting to see how long it takes to get my results back.
~Dawn
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Yeah @pricewool! Another video!!
You have such talent- Thank you for sharing it with us on the Forums! Grapevine looks like a very cool place. I’ve tried to do videos on occasion and they are horrible- I’ll stick with writing!
I walk Rocky the pug every day and often times I’ll see things and think “that would be a cool picture” but I don’t even bring my phone with me since getting my Apple Watch. I’m thinking I need to move someplace warm before the snow flies- I’m even more nervous about ice and snow this year than ever. The last thing I need is another fall. I think I’ll set up a treadmill for walking instead.
Thanks for sharing and keep on walking!
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Hi @ashleygregory757,
Your question is very interesting about how many patients actually have SCLC near the diagnosis of LEMS. I have met some patients who have had cancer, and know of a couple who have survived small cell lung cancer. Most often, however, the patients with a cancer diagnosis are not the ones who are active on social media seeking answers. They are either very sick with their treatments, or much older than those of us with autoimmune LEMS, and they don’t partake in social media. I have seen various LEMS Facebook pages posts by relatives of the LEMS patient with cancer.
The one thing I really love about the Forums is that it’s not Social Media. We definitely have a wider range of patients involved than on Facebook platforms. I do hope that the LEMS patients who do have small cell or another form of cancer find this post through the magic of Google some day and join us so that they know they have a community of support!
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Hi @ashleygregory757,
Thank you for your honesty in sharing your personal experience with depression. It’s important to relieve the stigma around it.
I’ve battled depression since my mid 30’s. Raising 3 boys with no family to help and an ex whose mission was to beat me down mentally at every opportunity was very difficult. However, my depression was at it’s worst when I had to stop working and file for disability, even before my LEMS diagnosis. I have had more than my fair share of medical battles my entire life but to lose my professional identify was very difficult to handle. I found a great therapist who I asked to challenge my thought process- not just listen and agree with me- and he has been invaluable.
Writing my blog and then becoming a columnist for Lambert-Eaton News has also been pivotal in giving my life purpose. Even though my post-concussion syndrome has added even more medical issues and complications with some relationships, I can honestly say my depression is not nearly as bad as it was years ago because every day I have a way to make a difference- whether it be by writing my column or moderating these forums. I’ll always be grateful for the opportunities!
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Hi @ashleygregory757,
I have to say my experience as a chronic illness patient has not been one that I’ve ever felt discriminated against for. My employers, coworkers and friends all saw in my eyes and my face when I was really fighting against fatigue, pain and side effects. They knew I worked as long as I possibly could and didn’t stop until I had no choice. My doctors were all the same way.
However, my post concussion syndrome has been a totally different story. Fortunately, BioNews, our publisher, has been wonderfully supportive. However, when I called 911 and went to the ER due to the severity of my symptoms, they were brushed off and put under “migraine” because I’m a migraine sufferer. My pleas for help were ignored and almost led to a dire outcome. Unfortunately some people I know also took offense to my retreating to take care of myself and not embarrass myself by my inability to talk. The 6 months post concussion have been more trying emotionally trying to get providers and people to understand than I’ve ever dealt with in the 20+ years of being chronically ill.
Anyone who truly knows me knows that when I become quiet, something is severely wrong. I’ve had to learn that some people just aren’t going to understand and to not waste any energy that I need to heal worrying about them. I also had to get a new neurologist who has listened, taken my post concussive syndrome symptoms seriously and started me on various treatments and PT to help. I’m so grateful to have found him.
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Hi All,
I’ve wanted to get back to this topic since I saw it scroll through when I was on medical leave. I went to school for and was a sexual health educator for a number of years, so, there’s no taboo topic for me. Ha!
Sexual dysfunction with LEMS is listed as a “man’s issue” and I’m riends with some male LEMS patients who have admitted to it once being an issue. They also found great improvement with this issue once they started on Firdapse. Sometimes the improvement led to a desire for sex that their partner found a bit overwhelming!
Females can have sexual dysfunction, or inability to reach climax or the inability to reach a full climax with LEMS. The nerve for the penis is the same as the nerve for the clitoris. Myself and some of my other female LEMS friends all discussed the fact that with FIRDAPSE, we all noticed (and our partner’s noticed) a major improvement in our climax and desire. It was a bit of an enlightening topic for us all to talk about openly because until we did, nobody realized that FIRDAPSE was the common factor, Some thought maybe, in our older age, we were more comfortable with our bodies and thus climaxing was easier and stronger. Nobody listed this as a side effect of Firdapse I don’t think!
How about you? Men ad women- have you found that FIRDAPSE helped your sexual experience as well?
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@ashleygregory757,
I knew you would understand the anesthesia issue. I wish I had been able to have an epidural but- at least I had healthy babies as the end result.
As for the methergine, my OB seemed to say that having to do both methergine and pitocin at the same time to contract my uterus was not the norm that he experienced post c section. However, I had new Mom brain. Looking back, it was something that made me go “hmmmmm.”
I have read about moms with Myasthenia Gravis’ babies sometimes have transitional myasthenia when they are born- it would be interesting to hear from anyone whose baby may have experienced that. Thankfully it’s transitional.
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Hi @ashleygregory757,
I can understand why you would be curious about thus topic! I fall in the undiagnosed but having had symptoms for a while.
Here are things I think of looking back:
-I carried extremely large. My babies were big, yes, but being close to 6 feet tall, my stomach was enormous. I scared people being put and about the last few weeks. They would ask if I was expecting twins…lol. We have a mutual friend with LEMSs in her last few weeks abs our stomachs are so similar. It’s as if my abdominals did absolutely nothing to contain my expanding uterus.
-Due to my back complication and size of my babies, I had to have c sections and an epidural was not an option. The first general they put me under, I stopped breathing. You probably know more about which med they shouldn’t have used. From that point on with subsequent surgeries when asked if I ever had a problem with anesthesia, I’ve told them not to use what was used for my first C and never had that issue again.
-I would not stop bleeding after my first C. My uterus would not contract with pitocin alone. Methogyn had to be added. My OB told me the next day he thought he was going to see me in the OR again the night before. It was very close. Each successive pregnancy he gave me both contraction meds after my c sections to contract my uterus.
Heathy babies? Yes, absolutely. However, the pregnancies were definitely tough on my body. I’ve lots of battle scars and stretch marks.
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Hi @joyce275,
Shortness of breath is much better than what I was thinking. Haha. I do know of some people that have had that same struggle when their LEMS isn’t controlled yet. Once you are on treatment I’m hopeful you will see improvement like many of us have.
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Wow @bobbi-Lynn-berry !! To be diagnosed my someone trained by Dr. Lambert himself!! That’s amazing! I’d continue to drive six hours to still be seen by that doctor as well!
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Hi @pricewool,
I’m so envious of you and that pool!! I’d be fighting you for waterfall time if I was there! I absolutely agree meditation and finding peace amidst the current storms we are living through is so important.
Like other LEMS patients, I don’t do well in heat and high humidity. However, the last of summer in Maine has been absolutely gorgeous. Low 70s and blue skies everywhere. I spend time each day parked in the middle of my back lawn, listening to tunes on my iPhone and thinking about nothing else other than the fact that I’m so fortunate to have such a gorgeous personal space to myself during this pandemic.
Once the snow falls, I’ll have to find another place to meditate, however. Haha!
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Hi again @joyce275,
One of my first LEMS friends, @bettyl-ann-lasley uses a cane and then a rollator for longer treks. She has even gone to patient advocacy meetings with me. I miss those this year!
What is the SOB you are referring to?
I noticed your comment about cramps and magnesium. The very first thing my neurologist cautioned me on was to NOT take magnesium supplements when I was diagnosed. Magnesium slows down the neuromuscular junction even more than LEMS does. It’s contra indicated for us as well as Myasthenia Gravis patients for the same reason. For cramps, I make sure to drink plenty of fluids with electrolytes (Smart Water or Vtamin Water zero without sugar) and get plenty of potassium by eating prunes.
Here is a cautionary list of meds/vitamins published by the Myasthenia Gravis Foundation of America. Some are able to do ok with some magnesium and I don’t avoid it in foods; but if I eat too much of something with magnesium in it (chia seeds for one example) I literally have a much harder time getting up and down stairs.
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Hi @joyce275,
I’m so happy to have you join us and post your first post! I’m sorry to hear about the challenges with getting the correct Mayo test ordered, though! I know how difficult it is and my lab that has done my Mayo test each time has had to double check. I recently had my antibody levels tested again to compare to how they were prior to my current treatment regimen, and I made sure to go to the same lab. I certainly hope the office manager at your doctor’s office can do something about that huge bill for the incorrect test!
It is normal for the Mayo paraneoplastic antibody test to take weeks for a turnaround. I’m glad their nurse came to your home and that the forums have been a good source of information for you! We have a very knowledgeable group of patients as well as great scientific support from our publisher Lambert-Eaton News!
Please keep us posted on your results. It definitely sounds like you have a competent neurologist now. I recall full well the relief I felt with my diagnosis that I indeed was not losing my mind with all of the vague symptoms that took so long to diagnose. For many, getting to diagnosis is the hardest part with LEMS. There are a variety of treatment options available now that help most everyone!
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I had my LEMS voice long before I was diagnosed. I used to always go hoarse or barely be able to talk in a whisper after doing my multiple public health presentations a week in my 30s. People would ask what was wrong and I had no idea. There was talk of doing an upper GI to see what might have been causing it; but I always put it off due to a high co-pay.
Once I had my LEMS diagnosis, when my swallowing started to become severely compromised and my voice got MUCH deeper, my neuro insisted I start IVIG to get my LEMS better managed. The first proof of the benefits I had from IVIg was regaining my ability to swallow, taste, enjoy food textures, and I got my normal voice back!
Tescha, I’m sorry one of your vocal chords is paralyzed from LEMS. I pray one day something works to help you as much as treatment has helped me!
Price, I’m so proud of how well you do with recording the flash briefings. You do a fabulous job and I know that takes a lot of management and planning on your part. I’m always amazed and proud of how fabulous you make my columns sound. Thank you!
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Hi @pricewool,
Yes, for me, brands definitely made a difference with IVIG. They all have a very specific to brand make up with the fluid that contains the Ig. I can’t get into the specifics now; but when I come across a brand comparison chart that I used to look at, there were lots of differences. I had extreme migraines with some and manageable headaches with others.
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I think this is a great idea! So many providers do not have the time to research new therapies for rare diseases and sometimes what is found on social media for rare disease patients is slanted or not reliable. Having a place to share patient feedback and perhaps find new clinical trials for rare diseases is a win-win!
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I’ve experienced the muscle knots that Ashley describes for decades. Doctors say it feels like I have “rocks in my traps.” No amount of massage, heat or muscle relaxants will relieve them. Only on occasion, when my med balance is perfect, do I get relief. I realized this spring, as my Sub Q treatments were becoming effective and there are no ups and downs like with IVIG, that my muscles were getting too much acetylcholine. I had to stop taking DAP and only take Mestinon, which has relieved my knee cramping issues completely.
The funny thing is that my diagnosing neuro doesn’t understand why we could have muscle spasms or pain. Well, if the acetylcholine release that has been blocked by antibodies gets resolved, muscles are going to react. Also, if some muscles aren’t contracting the way they should, then others are going to over compensate to try to make up the difference. I learned this with the issues stemming from my back surgery and fusion. The muscles around my rod haven’t had to do anything in almost a half a century- so the muscles above and below my fusion have taken on more work and thus spasm.
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I am so glad you had such a great Birthday weekend Ashley! I definitely hope to parasail someday….those pics look amazing. Thanks for sharing!