Dorothy Dempsey
Forum Replies Created
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Thank you Price for all the encouraging words, you have made a positive difference in our lives for sure!
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I have Collagenous Colitis which is autoimmune for me. The LEMS diagnosis came first however I believe the Colitis was in play prior to the LEMS because I had the symptoms of Colitis before the Symptoms of LEMS, the diagnosis I got after the LEMS. However, there was not too much time lapse between the two!
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To answer your question Price, I would hesitate to go to 100 mg/day Because of my age, I will be 83 this year, and because of my weight, I have a hard time maintaining 110 lbs. I take my 80 mg every 2 hrs. from 6 A.M until 8 P.M as having to wake through the night to take them would be very disruptive to my sleep which is critical for my overall health. I had one neuro. who suggested that if I felt I needed, I could take them every hour and a half occ. I have done that on occasion without difficulty and just recently I accidently took 2 within 20 mins of each other with no adverse side effects but I don’t know if I would be comfortable taking more than 80 mg/day just because of my fear of possible seizure activity. I guess primarily because of my age and how I have reacted poorly to so many other drugs I have tried to take.
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I have been on 80 mg/day for several years but would be hesitant to go higher.
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I just recently had my computer and personal info compromised by hackers and have been dealing with the aftermath of getting my life back together again. Because of the stress, I have been next to unable to walk, my balance is much worse and weakness profound!
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I grow my own raspberries and blueberries so use them in my smoothies which I make almost every day. And I toss in a handful of my own Kale as well. I preserve plenty of berries and Kale in my freezer for winter months. I love pears and mangoes too!
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So grateful for the cooler weather now! Here in Oregon, we had the hottest summer ever recorded and that makes 3 summers of excessive heat. I had many LEMS flares with extreme weakness and exhaustion. I have flower beds and garden to keep watered and tended so it was a real trial for me to keep going. Sleep at night didn’t refresh either. Glad for some cooler weather now.
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Approximately 2010 was when I started stumbling and felt weakness in my hips but didn’t think too much about it until my husband mentioned he noticed I seemed to be having trouble staying on my feet. At that time we were still walking about 5 miles a day, every day. In a few months, I started falling, anytime, anywhere, no warning, when walking. Just seemed like my legs were chopped off at the knees and down I went. So then came the several years of doctors and tests before I was finally diagnosed with LEMS in 2014. I have always wondered if stress wasn’t somehow involved in this as I had a great deal of it with trying to get immigrated back to the US, several properties to get sold, marital problems at the time. Have often wondered if all the stress wasn’t the catylist here!
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My prescription order is for 8 tabs, one q 3 hrs/day. That is too disruptive of sleep which is critical for us LEMS patients. I found that taking one q 2 hrs. Through waking hrs. Works well for me and just had visit with my Neurologist and he’s perfectly okay with that as I am able to play catchup come morning and doesn’t make getting up at night an issue as far as mobility is concerned.
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Another name for this is Biaxin which I am very allergic to!
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An interesting read Price! The Assistance Fund has been paying my co-payment for Firdapse for approximately 3 years now. Currently the cost is $49,997 per month for 240/month. I am truly so grateful for their help. I have to request end of each year to re-enroll in the program but they have made it so easy to e-mail the application back to them. There is never a guarantee the funds will be available for the next year but, so far, I have been so blessed to be accepted. Without their help I couldn’t afford it on my own. Also have to thank Catalyst Pathways for helping me navigate all the places I have to go to make the Firdapse available to me.
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DD
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I started on a GF diet in 2009, followed it for many years as it helped me to deal with chronic diarrhea and weight loss. Baked my own bread and other goodies. I still use it somewhat as I do feel better in it but am not religious at it. Should be though as I agree with Price. I believe it does help with LEMS and inflammation related to it. I need to get back in the saddle again!
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It took approx. 5 years to get my LEMS diagnosis. I was diagnosed with spinal stenosis in 2010 and working with physical therapy for that until a couple years later at which time I decided that wasn’t working. After going through 3 neurologists and 3 years after that, I found the 4th neurologist who gave me the LEMS diagnosis first visit.
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In reference to your article of Jan. 12th related to headaches, I have been blessed with migraines for several years, each episode lasts approx. 3 months duration and every waking hour of the day. I always have an aura before hand so I know when they are going to flare for the day. My aura is always nausea and my eyes have trouble focusing with blurry vision. I can pretty much depend on migraines for spring and fall. I have so far been intolerant of any medications prescribed for them.
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Just had my booster shot tuesday, it was Phizer even though my first two were moderna. Next day headachy, a little nauseous and achy but just one day so am pleased. Not nearly as bad as the week after my second Moderna shot.
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The lung nodule I mentioned in a previous reply was thought to possibly be due to a fungal infection.
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In 2006 I had a chest xray prior to a surgery and a nodule was found on my left lung at that time. I had CT scans every 3 months for a while, then every 6 months for some time, then every year and since 2012 I have one every 2 years. The size of the nodule hasn’t changed, at least not up until my last scan in 2020. So my diagnosis of LEMS wasn’t until 2014 but I had symptoms starting in 2010, weakness, falling, Pitosis of the eye, etc. of LEMS. It just took many visits to doctors and 4 neurologists to finally nail a diagnosis. I think now of the rough ride it was but am grateful for some relief with Firdapse!
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It is so frustrating that others seem to think you are exaggerating your condition. Other than looking a bit older, I look the same as I did a few years ago when I was walking at least 5 miles a day and full of ambition. Entered LEMS and now I struggle to walk, and normally at that, for a very short distance. Why don’t I get out in the evenings for functions? I am so 😩 exhausted and weary, I’m lucky to make it to bed
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As a medical records director in a 114 bed facility for 27 years, I also did all the coding for all dx and proceedures.
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I will plan to be there.
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I am very interested!
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Happy Birthday Price.
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Thank you Price, yes I did read your article.