Dawn DeBois
Forum Replies Created
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Hi Wanda,
Unfortunately, that’s not an uncommon situation. I’m hoping that neuros and rheums are becoming more aware of LEMS. My prior neuro got stuck in constantly looking to see if I had MS. I do have areas of demyelination in my brain so she kept watching those. When results came back questionable or inconclusive, she didn’t dug further. I also have a fibromyalgia diagnosis; but other than the muscle spasms, I don’t continue to have the leg pain/foot pain that was unbearable in my 30’s since going on my LEMS meds. How about you? Are your fibro symptoms controlled now? I recently had trigger point injections in my traps due to the spasms causing nerve impingement. When my new rheum was doing them I told him how I know other LEMS patients who get the “its like you have rocks in your back” comments when seeing a new provider. Do you get those, too?
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Hi @dlewis,
I learned from trial and error, and a lot of googling foods and their magnesium content! Chia seeds are 96 mg of magensium per ounce, so a sprinkling, not an issue- using them as thickeners, which is what I did, a huge issue. Bananas, no issue, but I don’t eat dried banana chips- eating a lot of those in one sitting could cause an issue. I literally feel it within 20 minutes of eating too much. One day I ate quite a bit of dried mango, munching along while watching a movie- thinking I was eating healthy! Well, soon I felt the tell tale weakness and sure enough, there’s 36 mg of magnesium in one medium mango.
My diet pre-COVID has been mostly fish, chicken, nuts, veggies, protein bars, and fruit. I try to limit processed and refined sugars, primarily because I also have psoriatic arthritis and keeping my sugar intake down helps with my pain and inflammation levels. Right now I’m struggling with my diet because I grocery shop far less (so it’s hard to keep fresh veggies handy) and it’s showing in my weight and pain levels. I rarely eat red meat and eat minimal dairy and gluten. I’m not on a strict “anti inflammatory” protocol but I do try to follow it’s guiding principals, and it does help.
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Hi Debbie and Ruth,
I’m so happy to see you supporting each other in the forums!
The magnesium concern with LEMS (and MG) is something that is missed by many neuros, unfortunately. My neuro told me the very first thing upon my diagnosis “Whatever you do, don’t take magnesium as a supplement!” She knew about the issues it could cause and explained to me that with Multiple Sclerosis, patients are told to take magnesium, as well as patients with migraines. Not ALL magnesium causes this, such as found in foods with trace amounts. The challenge comes when you eat too much of it. For example, chia seeds- I had a horrible experience with it when I was adding a tablespoon to cranberry juice to thicken it like jello and help with satiety- as it expands and fills the stomach. I was shocked at how difficult it was to lift my legs. When I’d have a reaction, I’d look up the amount of magnesium in the food. I found dried papaya and dried mango cause the same result with me- dried fruit it’s easier to eat a lot more than one serving, which is where I found the issue thinking I was “eating healthy.”
I literally can feel the difference come on about 20 minutes after eating something high in magnesium. My neuro was nice enough to answer my messages when I’d tell her which food I felt it with and the magnesium amount per serving….Chia seeds have 95 mg of magnesium per ounce. That’s high. Bananas only have 35 mg of mg for one medium banana, so, I have no issue with those. If you google “magnesium content” with the food it will bring it up quite easily.
I’ve learned to look at labels for protein shakes, vitamins and such to make sure I don’t go over 30 mg per serving. One LEMS patient I knew was having difficulty managing his symptoms, and it turned out he was eating a can of sardines each and every day, with 36 mg of magnesium per can!
Dawn
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Sure @ashleygregory757 – Count me in!
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My co-diagnosis’ include: fibromyalgia, psoriatic arthritis, ankylosing spondylitis, hashimotos thyroiditis and most recently dysautonomia.
Because psoriatic arthritis is continuing to destroy my fingers, and my ankylosing spondylitis causes a large amount of back pain, my new rheum would really like me to consider going onto a biologic to get them under control. However, many are known to cause issues with demylenating conditions. Not so much is known about LEMS with the biologics, except for the one I tried already. One I tried after hydroxychloroquine definitely added to my LEMS symptoms. Is anyone who has LEMS also on something for severe arthritis or spondylitis?
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@dlewis I am so glad you found them helpful. Traveling with a chronic illness that requires meds around the clock can be interesting but, it’s definitely worth it!
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@dlewis I am so glad you found them helpful. Traveling with a chronic illness that requires meds around the clock can be interesting but, it’s definitely worth it!
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Hi @ashleygregory757! I’m proud of you for getting that huge job done! It always feels good to complete a project like that- and usually dreading doing it or getting side tracked with other social events keeps it knawing at the back of our minds. I can’t wait until it warms up here in Maine more consistently because I have a few yard projects to work on myself.
I started veggie seedlings to plant at the end of the month. It actually was more relaxing than I imagined it would be wetting the soil, counting the seads, and organizing the seedling tray with lables of what I was planting. I’ve really limited my shopping time so I am missing fresh veggies- they don’t last for the full two weeks between store trips. So, I’m very much looking forward to having my own fresh cukes, tomatoes, peas, lettuce and more! If it wasn’t for COVID, I can guarentee you I wouldn’t have started seedlings. I’ll keep you all posted on the gardening adventure!
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Wow @dlewis, you certainly have quite the story- and this is such a scary time to have a rare disease diagnosis come along as well. However, I’m quite positive that once you start your treatments, you will find that the most difficult part of this diagnosis is when you haven’t been diagnosed yet. There are many treatments that help greatly- some of them work in coordination with each other.
As far as your choking- that was why I started IVIG and it was amazing at how quickly it improved my swallowing. I rarely have any swallowing issues now, like maybe once a year?
Having multiple autoimmune diseases isn’t uncommon with LEMS. The good news is that those patients who have multiple other autoimmune diseases tend to have the NT type of LEMS (Non-tumor caused). However, I do hope your neurologist is going to scbedule a CT scan just to make sure.
I’m so glad you found the information about calcium channel blockers and magnesium causing LEMS symptoms to flare- it’s crazy how bad it can get. I can’t walk up my cellar stairs if I have chia seeds, that are high in magnesium!
We are happy to have you join us, please take a look around the different sub forums as well as my column, LEMMe Tell Ya. You’ll find lots of info and we will be here to help you process it. You finally have a diagnosis, so now your neurologist can work on a plan and, yes, many are able to hike and do all the fun things they enjoyed before LEMS- I can!
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@joanneevans and @ashleygregory757, I am game to join as well! I’m trying to find better use of all of this quarantine time- plus, it’s warming up in Maine so I can’t wait to sit outside and read more!!
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Hi @pricewool,
I’m so glad you are feeling better. I always had flu like reactions on IVIG; but the difference the treatment made for my LEMS, once I started to feel better, made it worth it. I always counted on not feeling great 4-7 days out from the first day of treatment. Not only would I feel like I had the flu, I’d get pretty bad headaches as well. BUT, it was absolutely worth it to feel so much better the other 3 weeks a month!
However, now that I’ve transitioned to Sub Q infusions at home, I no longer have those reactions. I may feel tired the day after infusing, but that’s it. I’m absolutely loving it!
I’m so happy that it was only IVIG and not COVID that you were dealing with!
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@tcarr20 You are welcome! I hope you are doing well!
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Great question Ashley! My intro song would have to be “Let Your Hair Down” by Adam Ezra. It is one about living life to the fullest no matter what medical challenges are thrown your way. It’s even more poignant now. Check it out! https://www.youtube.com/watch?v=ZLs-np_v2pQ
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Hi @joanneevans !
Typically, LEMS needs a 1-2 bunch, sometimes a 3rd treatment option as well. Mestinon usually works best with 3,4 Diaminpyridine which, in the US is approved for adults under FIRDAPSE and for youth it’s RUZURGI. Prior to approval in the US, many patients were on the compassionate use program for 3,4 DAP through Jacobus Pharmaceuticals. There are Canadian patients who have been on the 3,4 DAP from Jacobus pharmaceuticals as well.
The reason Mestinon works best with DAP is because DAP increases the amount of acetylcholine released from the nerve terminal (which is what LEMS antibodies stop) and then Mestinon slows down how quickly the acetylcholine is used in the blood stream thus giving a 1-2 punch. It’s really quite amazing what a difference they make when used in combination.
Here is a column about Firdapse and Ruzurgi for your information, and that you can share with your neuro. I’m looking into the status of the application for approval for Firdapse in Canada, as well as how you might access 3,4 DAP from Jacobus, and will get back to you.
As for the 3rd part of treatment that a lot of LEMS patients are on, it’s doing immunosuppression or immunomodulation. Some patients have great success on Rituxab, cellcept, or other immunosupressants. Others, like myself, have done really well adding IVIG or plasmapheresis to our treatment plans. I truly am at pre-LEMS levels as far as strength and energy thanks to having immunoglobulin g added to my treatment plan. I’ve transitioned recently from IVIG to SubQ treatment, which means less time at the infusion center and less time recovering from treatment.
You can see more about LEMS immunosuppression treatment options here; and about IVIG here. and if you are interested in learning more about my IVIG and SubQ treatments, you can read about them in my column.
I know I’ve given you a lot of info to look at. Please feel free to ask any other questions you have and welcome to the Forums!
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Hi @ashleygregory757,
No matter how bored I may become with isolating and and now on mandatory quarantine with the rest of the state of Maine and most of the country, I won’t complain because I know there are so many on the front lines who also have compromised immune systems that CAN’T stay home. Thank you for being such an amazing nurse, and friend, and know that each and every day you are in my prayers that you are kept safe.
Stay Safe,
Dawn
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@zoey it has been my absolute privilege to witness you and your sister looking after your mother. Your compassion, humor and support absolutely make her challenges easier to bear. Thank you for sharing your insight here.
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@reh303 Romy – @romylb lives in Philadephia but has a condo on the Jersey Shore in Atlantic City! I’m sure she’d love to meet up with you one day! She is one of the patients I know that has been living with LEMS, diagnosed, for a very long time! She could tell you stories- and you will laugh at almost all of them! 🙂
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Romy and Ken, that is for sure! It makes things extra difficult when we are having a difficult day!
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@ashleygregory757, I apologize for taking so long to answer this fabulous question. The biggest piece of advice I would have told my younger self would have been to not be in such a rush to get married and start a family. Due to always wanting that nuclear family that evaded me in my childhood- I was in such a rush and had so many fears associated with all of my losses. I wish that counseling was something my foster family suggested to me after my high school boyfriend died tragically; but they didn’t even consider it. I was expected to just get over it. Counseling would have helped me immensely to not make hasty decisions that my gut told me were not in my best interest. I was in such a rush because of all of my losses. I wish I’d enjoyed being a single professional to it’s fullest extent- travelling, building career security and financial security on my own.
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Hi @michm7270!
Welcome! Thanks for joining in the discussion! I have many friends in PA!
I understand your concern about your upcoming scans. My neuro felt the same way as yours did because I had symptoms for decades prior to diagnosis. My neuro was right. I have no signs of cancer and multiple other autoimmune diseases, which makes mine purely autoimmune.
May I ask why you are attempting to get approval for Ruzurgi first? Is that your neuro’s preference? I do know that some patients prefer Ruzurgi but I also know many patients have done well on Firdapse. Catalyst has a program called Catalyst Pathways to assist with approvals and to assist with any out of pocket costs. Because Ruzurgi is “off label” to adults, Jacobus is very limited in how much they can help with out of pocket costs because that would be considered “off label promotion.” Please don’t let the fear of the cost prevent you from accessing treatment if that becomes a barrier.
We are super happy to have you here!
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@lorildunham, is that Grace in your new profile pic?? It literally brings tears to my eyes to see her. I can’t wait for you to be able to share more of her story with the world but it does my heart SO good to see her beautiful smile. Please tell her I said “Hi” and that I’m so happy to hear how great she is doing since adding IVIG to her treatment!!
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@carmen-fennell-willings, you literally were blocks away from me! I wish we had met sooner as well!!
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@carmen-fennell-willings, Welcome back! You’ve been missed; but we totally understand. Those recipes look amazing. I’m going to have to try making the gummies. Please keep sharing!!!
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@lupie-linda-gray, Thank you so much! It was a beautiful day!!