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Wanda Grischkowsky replied to the topic Would you switch to taking 100 mg daily of Firdapse? in the forum Amifampridine (Firdapse and Ruzurgi) 4 weeks, 1 day ago
I currently take 60 to 70mg per day and feel it isn’t enough sometimes. I am unsure if I would increase to 100mg.
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Wanda Grischkowsky replied to the topic Is LEMS your only autoimmune disorder? in the forum General Questions and Topics 4 weeks, 1 day ago
I have autoimmune diabetes (Latent Autoimmune Diabetes in Adults), which was diagnosed one year ago.
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Wanda Grischkowsky replied to the topic Mom says, Eat Your Vegetables! in the forum Living With LEMS 4 months, 2 weeks ago
I prepare my veggies pretty much the same way and experiment with different seasonings. Because I have gastroparesis, my vegetables are cooked a little longer to help with digestion.
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Wanda Grischkowsky replied to the topic FIRDAPSE side effects: Does everyone experience them? in the forum Amifampridine (Firdapse and Ruzurgi) 4 months, 2 weeks ago
I didn’t experience side effects with Ruzurgi. However, now that I am taking Firdapse, there are side effects including blurry vision, upset stomach, and tingling. Firdapse doesn’t work as well for me compared to Ruzurgi.
Mestinon caused intolerable side effects. Azathioprine cause elevated liver enzymes and didn’t seem to improve my LEMS symptoms.
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Wanda Grischkowsky replied to the topic Gearing up to start home infusions! in the forum IVIg and Plasmapheresis 4 months, 4 weeks ago
That’s great news. It would be nice to get in-home infusions instead of being at the infusion center for 8 hours due to slow rate. It helps to have a comfortable chair as well as plenty of snacks and drinks, but the two days are very long.
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Wanda Grischkowsky replied to the topic LEMS and the flu vaccine in the forum Living With LEMS 5 months, 1 week ago
I got my flu vaccine and third COVID booster vaccine and experienced no side effects.
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Wanda Grischkowsky replied to the topic Walking with LEMS (video) in the forum Living With LEMS 6 months, 3 weeks ago
Thank you for sharing your video. Your walking area seems very pleasant.
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Wanda Grischkowsky replied to the topic The HEAT is OFF! How Did You Do? in the forum Living With LEMS 8 months, 2 weeks ago
The heat was pretty bad this year. I tried to only go out early and made my appointments for as early as possible.
I have a flower bed and two raised garden beds and could only work in them late evenings. Even then with the humidity I could not work in them very long due to weakness.
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Wanda Grischkowsky replied to the topic Traveling with LEMS in the forum General Questions and Topics 8 months, 2 weeks ago
We normally take a cruise every year and I feel it is the best way for me to vacation because I can enjoy the ship with plenty of entertainment and food choices if I am having symptoms and don’t feel up to going out, or I can enjoy the islands by sightseeing or doing excursions if it is a good day.
I have some suggestions. If you are planning t…[Read more]
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Wanda Grischkowsky replied to the topic 10 Everyday Signs of Depression in the forum Living With LEMS 1 year ago
Brought on by illness, I continue to battle depression although I take Lexapro (a SSRI).
It gets harder to deal with new diagnoses and flares.
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Wanda Grischkowsky replied to the topic Glucose issues with LEMS in the forum General Questions and Topics 1 year ago
I have had fluctuating glucose levels for years now. Diagnosed with Type 2 diabetes initially, I was put on oral medication but experienced extremely low glucose. So, I had to stop taking diabetes medications.
Recently my glucose started increasing overnight only. My endocrinologist did a lab test which I tested positive for latent autoimmune…[Read more]
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Wanda Grischkowsky replied to the topic What To Do On a Bad LEMS Day in the forum Living With LEMS 1 year, 2 months ago
Thank you for the tips. I am pretty hard on myself when it comes to listening to my body. Pushing myself only makes the situation worse. I do try to accomplish things early morning because I tend to go downhill by afternoon.
I transitioned from Ruzurgi to Firdapse about 3 weeks ago and do not think it is as effective. My weakness has worsened but…[Read more]
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Wanda Grischkowsky replied to the topic Dry mouth from Firdapse in the forum General Questions and Topics 1 year, 3 months ago
I also use Biotene mouthwash which does help with dry mouth.
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Wanda Grischkowsky replied to the topic Blood pressure medication in the forum General Questions and Topics 1 year, 4 months ago
I take Losartan. Prior to that I took Lisinopril, but it was stopped. I was told to avoid beta blockers.
It can become complicated because some days I have to miss or decrease the dosage because my blood pressure drops too low, causing grey-outs or blackouts.
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Wanda Grischkowsky replied to the topic How Long To Get Your LEMS Diagnosis? in the forum General Questions and Topics 1 year, 4 months ago
It took me 15 years to receive a diagnosis. Even doctors at Johns Hopkins Hospital missed it. I was always considered “complicated” and was even told my symptoms were in my head and that I was malingering.
However, when I saw a specialist for Dysautonomia, he diagnosed LEMS.
I currently take Ruzurgi and get IVIG two consecutive days every 4 wee…[Read more]
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Wanda Grischkowsky replied to the topic It's Easy When It's Easy, Walking with LEMS in the forum Living With LEMS 1 year, 6 months ago
My balance is pretty bad. However, I try to walk on the treadmill especially during summer and winter seasons. I can’t handle heat and the winters are hard on my asthma.
I only wish I could get in daily exercise, but my body won’t allow that.
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Wanda Grischkowsky replied to the topic We want to hear about your experience with the COVID Vaccine! in the forum Coronavirus (COVID-19) and LEMS 1 year, 6 months ago
I received both doses of Pfizer COVID vaccine and the booster. No issues with the first dose, but had some mild flu-like symptoms with the second dose. I had mild symptoms with the booster that lasted a day.
Concerning statins, I tried taking them years ago, but always suffered with muscle pain and weakness. Recently my endocrinologist…[Read more]
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Wanda Grischkowsky replied to the topic LEMS Diagnosis Improved With Lower EMG Test Threshold, Study Finds in the forum In the News 3 years, 1 month ago
Very interesting. I had repeat EMG tests.
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Wanda Grischkowsky replied to the topic How long to diagnosis? in the forum Diagnosed- What now? 3 years, 1 month ago
It took almost 15 years for a LEMS diagnosis. I was misdiagnosed with Fibromyalgia, MS and other conditions.
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Wanda Grischkowsky became a registered member 3 years, 4 months ago
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