Dawn DeBois
Forum Replies Created
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@Pricewool
I used to look forward to the Jerry Lewis telethon every year!! What a great memory!
And, FYI, you are MORE than welcome to keep your “Walks with Price”- as I think of them- videos coming. You don’t have to talk about LEMS, you could give us your thoughts on other things as you walk, with LEMS. I’m certainly not video savvy like someone I know- uh, you!What do you all think, LEN forum members, what topics would you like Price’s insight on while he records “Walks with Price” for us?
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Hey Guys,
My vision kept getting progressively worse, as my undiagnosed LEMS kept getting progressively worse. My eye doctor and I attributed it to working for Verizon Wireless and being on screens all the time. When I was FINALLY diagnosed, and went through the crazy and insane loading dose of Solumedrol, things got really blurry. It scared me and they checked with my neuro- who assured them I needed to continue the loading dose. Well, on my last day I took off my glasses when I got settled into my infusion chair, and to my shock, the leaves on the trees outside the window were crystal clear!
I literally had to try various older scripts, that were weaker, to see which ones worked. My eye doctor was amazed and unfortunately, it perplexed my neuro.
I refused to continue with the solumedrol because of the dangers of high dose steroid treatment and the horrific side effects I went through (no one told me that the myasthenia can get worse, temporarily, with this treatment).
The good news is, as my treatment plan finally got worked out, my vision stopped changing and my glasses are no longer coke bottle thick magnifiers. LEMS can affect ALL muscles. For me, my autonomic system is affected the worst. Eye muscles are autonomic. Oh, and the other thing that happened once my treatment plan was figured out- my dry eye went away and I’m back wearing contacts again- yeah!
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Hi everyone! This is a great thread. I’m limiting my screen time with my TBI recovery but wanted to chime in for those who don’t already know…I was diagnosed at the age of 46, 4 years ago this October. Unfortunately, it has been determined I went undiagnosed for most of my life. People thing LEMS is really tough, and it can be; but LEMme Tell Ya, that the fight for a diagnosis is the worst.
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@pricewool You have NO idea how much I was wishing you were with me yesterday at PT. No idea. It didn’t go well because, as you know from talking to me, answering questions right now is very difficult due to my TBI. I had assumed my physical therapist had truly looked at my info when he received it, or, would ask me a question (when I was doing better and said LEMS- but I didn’t go into my teachable moment with him because, uh, I’m recovering from a TBI). It has taken me until this morning to recover from that horrible experience. LEMme Tell ya, there’s a column spinning in my brain about that horrible experience….
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Hi Ashley,
I’m so sorry that happened. I’ve been there myself, as you know. What I learned through my entire IVIg experience was that added stress would cause my side effects to be worse- especially the headache. I’m so glad using your diffuser calmed your stress and thus the extreme headache from IVIG! That is wonderful. Thanks for sharing which oils you used- I would have no idea which one to use. I don’t have a diffuser. I know, I know, I’m probably the only person on the planet without one!
When I’m feeling unwell, it’s music for me. While I was extremely unwell during my concussion/traumatic brain injury exacerbation in July, I found that listening songs that brought me happy memories, very,very softly, from my iPhone, helped lull me off to sleep. Instead of only feeling the pain I was in, I concentrated on the great memories of people, concerts or events that each song represented! It worked! My challenge right now is finding new songs with new memories to turn to when my symptoms flare a bit, because that playlist that I titled “Healing” and listened to incessantly, is now tied to memories of such a difficult time.
I’m so grateful to Price. We are both music lovers and have had many conversations about favorite artists, music documentaries, concerts, etc. We’ve introduced each other to bands or songs that the other hadn’t heard yet. While I was gone, and Price knew I was having a difficult time, he sent me a Joe Walsh CD, having absolutely NO idea that I’m a huge Eagles fan. On the CD, the song Lucky that Way became an instant new favorite! I texted Price from the parking lot after driving to physical therapy telling him how much I loved the CD, especially that song! Of course, it turns out that it was one of the favorites as well. As we all know, words speak to me the lyrics that jumped out at me, stuck with me, comforted me were “Started in the middle of nowhere, didn’t have far to fall, the times I thought were the end of the world, didn’t turn out so bad after all.” The song literally became my mantra for the month of August. I’m actually playing the live video on Youtube as I type! The CD is in my VW, cued up for when I head to PT!
I just took a glance at the video and realized, Price, that you are absolutely rocking the Joe Walsh hair right now! Doesn’t everyone else think so?
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Hi @pricewool and @ashleygregory757,
I’m team Sub Q here. I’ve had many IVIg side effects resolved by changing to the Sub Q route. My severe blood pressure drops were very concerning and my headaches/flu-ish feelings often times went on for days. Ig makes a huge difference in how my LEMS is managed so it was worth going through but, now that I’m on Sub Q, my side effects are only site reactions.
Some think, like you, that having to mess with it at home every week will be a pain; but for me it’s become second nature. I like having my treatments planned around my life not my life around my treatments. Plus, having them in the safety of my home these days without even needing a nurse to come in to help- it’s one less stressor in my life.
My veins were getting to the point of needing a port if I continued IVIG, and even though I have a rod in my back from my scoliosis surgery, I really didn’t want to get a port.
Having subcutaneous immunoglobulin as an option for LEMS and other autoimmune diseases treated by Ig is relatively new. Currently only Hizentra has an autoimmune indication (CIDP). I’m just glad there are options for everyone and that my insurance approved me off label!
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Oh @ashley757 the one thing I dread is cleaning the house. I used to love cleaning my house top to bottom and having it all clean at the same time. Ever since my LEMS diagnosis, I’ve learned that I can’t do it all at once without paying for it with a lot of recovery time. Now, I clean one room a day but it is never all clean at the same time, and I miss that fact. Since I can’t get my entire house clean at once, I dread cleaning at all because I can’t do it the way I’d like to.
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I hope they will address the economic factors that prohibit rare disease patients without financial resources from accessing the most well versed providers for their disease states. Often times these patients are patients in minority communities.
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I find this news very exciting! I’ve had many conversations with @Betty-ann-lasley and @romylb over the years we’ve been friends, trying to figure out commonalities. Where can we sign up??
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I’m the queen of heat intolerance. I marvel at how some people absolutely thrive in it because I never have. On beautiful hot summer days, I usually enjoy the weather before 10 am and after 4 pm. If I can get to the ocean, then it’s always much more enjoyable with the cool ocean breeze.
Then, adding LEMS to the entire equation, I spend a lot of time inside in Air Conditioning whenever Maine has a heat wave because it will cause my LEMS to flare up if I don’t.
I’ve noticed lately that I’ve been getting incredibly flushed whenever it’s warm out and I don’t know why. That’s new for me.
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My favorite rainy day activity is napping!! Haha! Napping with the windows slightly open, listening to the rain, is incredibly peaceful. If I’m not napping and have energy, I love to bake and cook something yummy for dinner that I normally wouldn’t take the time for. Unfortunately, rainy days tend to aggravate my arthritis so I tend to do far less on rainy days than I used to.
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I am not really paying attention to the “phases” in Maine, because many people are not taking COVID-19 seriously, unfortunately. I have been paying more attention to those businesses that are taking it seriously and following the guidelines set by the CDC- those ones I will utilize if I need something.
I do wear a mask when in a public indoor location; but because many are not wearing masks, I limit my exposure by shopping as infrequently as I can, or utilizing curb side pick up.
Socialization is indeed very important and I have a few friends that I know are taking social distancing seriously- so I feel safer spending time with them. Last night having dinner and Margaritas with a friend who hasn’t been in public at all – was refreshing and needed by both of us.
Talking while wearing a mask is quite difficult and I’ve realized in some conversations that I have a more difficuly
than others holding a conversation with my mask on. It makes me realize that indeed my muscles are weaker than others’ due to LEMS, and that social distancing is indeed a necessity for me for quite a while to come .
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Rebecca, I completely get your concerns. I feel horrible for all of the minimum wage workers in stores dealing with people refusing to wear masks. I have anxiety just seeing them when I HAVE to shop- I can’t imagine needing to work for 8 hours with them day in and day out. As for mass vaccinations- my body doesn’t respond well to vaccinations so I’m hoping my doctors will not push it on me. They know how sick I can get. On another note, I hope your chemo is going as well as it can.
Romy! I’ve seen your great mask pics. You are surrounded by not only huge numbers of COVID but now the protests and riots. It’s even more important than ever to be safe in all that you do. I most certainly didn’t envision what was to come when you gave me the fantastic tour of Philadelphia only a few short months ago. I’m so incredibly grateful for the memories!!
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Announcing June’s Book: A Burning by Megha Majumdar.
The Book of the Month Club’s synopsis is as follows: “A careless social media comment casts three characters into a web of violence, politics and tragedy in India.”
Ashley and I are using the Book of the Month Club to choose our books and get them at a deep discount with free shipping. If you would like to get $5.00 off your first book and join the book club to purchase your books the way we are, just let us know and one of us can send you our codes.
Social media can often times cause more harm than good. For that reason, and for the escape from the current problems in the great ole USA, I chose this book this month. Who wants to join us?
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@joanneevans,
I’m so sorry you went through that. So many of us were in the same boat. They kept looking at MS with me as well for close to a decade. I’ve told many people that the most difficult part of living with LEMS was getting a diagnosis. I, too, thought it must be in my head. I had so many tests that my prior neurologist told me were “inconclusive” that turned out to have signs pointing towards LEMS. My diagnosing neurologist, when I expressed my frustration at the prior not figuring it out, told me that the diagnostic criteria was so new and LEMS is so rare, she has no way of knowing.
I do what I do, as to many of my other friends with LEMS- educating every doctor that doesn’t know LEMS- so that perhaps diagnosis’ will happen faster in the future.
Perhaps we aren’t so rare after all? Doctors just need to know the symptoms, the tests and the variability in symptoms.
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In Maine, we are in phase 1 and I have an appointment for a quick trim next week. I decided to wait on getting my much needed highlights and let the summer sun take care of them right now. I just want to minimize my risk as much as possible (but desperately need a haircut!).
Maine is in an interesting predicament with the fact that we are SO close (50 miles to be exact) from one of the epicenters- Massachusetts. Being that we are “Vacationland” there is a lot of fear around visitors bringing COVID with them and making our numbers spike (so far a majority of our cases have been in nursing homes and other congregate settings). The governor has imposed a 14 day quarantine for anyone coming in from other states but, how is that to be managed?
We have now moved to letting businesses in counties that have no community spread open back up. Here’s hoping that our numbers don’t spike as a result. No matter what happens, I won’t be spending time where lots of other people are for quite a long time.
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Romy,
You were such a trailblazer!!!! It’s amazing how you did all that work yourself to find treatment- and then shared what you learned with other LEMS patients.
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Hi @ruth,
I apologize for taking so long to respond. My notifications aren’t working properly at the moment.
The way I look at treatment for LEMS, with what works best for me, is having the medicine that gets more acetylcholine into the neuromusclar junction by taking 3,4 DAP/Firdapse, keeping the amount of acetylcholine from depleting too fast by taking Mestinon, and, for many, something needs to be done to stop the antibody attack that causes LEMS in the first place. If the LEMS is tumor caused, then finding and treating the tumor is supposed to stop the antibody attack (although I know patients who have successfully beat cancer and still deal with LEMS symptoms). For those with autoimmune LEMS, it means adding an immunosuppressant or immunomodulator. I added IVIG first and have since transitioned to sub q Ig. I finally had most of my LEMS symptoms managed once I added IVIG! I know some people take Cellcept and others take Rituxan. Others do plasmapheresis. Are those available in Ireland?
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I have deleted the spammer. Please delete those messages!
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Hi Debbie,
That is very interesting about the soy! I’ve never seen anything contradicting it with LEMS or MG; but who knows? You are fortunate to have a neuro who has another patient with LEMS. Mine has been wonderful but I’m her first patient and she told me from day one “We will learn about this together.” Fortunately my background in health ed and pharma gave me a leg up at researching and understanding what I was finding out for info.
I hope you have a great Thursday!
Dawn
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Hi @dlewis,
I don’t eat a lot of soy because I have fibrocystic breast tissue, which has me at a high risk for breast cancer- and soy is a concern in that area. When I have had soy on occasion, however, I haven’t noticed any issues.
And yes, it is all with moderation as far as magnesium is concerned. As long as it’s not added to your vitamins, and you aren’t taking magnesium supplements, just be aware of how you react to certain foods with magnesium. What I learned when it would happen is that within a few hours, the detrimental effects would wear off. So, when I ate a large amount of dried mango, I just hung out and watched a movie instead of going for a jog 😉 I do like protein shakes but make sure to not drink any with a notable amount of magnesium in those as well.
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@dlewis,
I’m sorry to hear that they found something troublesome on your CT scan. Nobody ever wants to hear that. I know two LEMS patients that’s LEMS was caused by a tumor and they are both in remission. For some, the LEMS symptoms have allowed an earlier diagnosis of cancer, which has given them a leg up on treating it and thus beating it! Please keep us posted and know you will be in my thoughts and prayers until you find out.
Are they adjusting how they are holding graduations in GA due to COVID19?
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Hi Ruth,
I’m so happy that you are finding the info you need here in the forums! Being ultra-rare, it’s unfortunately ultra-rare to find providers that are well versed in LEMS treatment and management unless they are researchers themselves. Most neurologists have never had a diagnosed LEMS patient. However, I’m questioning how rare we really are with how long it takes so many TO be diagnosed!
I definitely recommend keeping a daily log of what you are eating, and how much you are “doing”, temperatures, etc to figure out what your triggers are. With autoimmune disease, stress is even a trigger. When I was only on pyrostigmine bromide (Mestinon), after first getting diagnosed, I was amazed not only at how it helped with strength and alleviated my dry mouth- but I was also shocked when I was stressed over something and the benefits wore off faster than usual. When I asked my neuro, she told me it’s a very common thing with neuro meds- they do get processed by the body quicker when under duress. Our entire planet is under duress right now with COVID19- so any declines can also be due in part to that. Stress management is so important.
We are so happy to have you here!
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Isn’t it interesting Wanda? I’m so glad more research is being done in the world of LEMS!!