Wanda Grischkowsky

I currently take 60 to 70mg per day and feel it isn’t enough sometimes. I am unsure if I would increase to 100mg.

I have autoimmune diabetes (Latent Autoimmune Diabetes in Adults), which was diagnosed one year 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.

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.

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.

I got my flu vaccine and third COVID booster vaccine and experienced no side effects.

Thank you for sharing your video. Your walking area seems very pleasant.

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.

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]

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.

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]

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]

I also use Biotene mouthwash which does help with dry mouth.

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.

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]

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.

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]

Very interesting. I had repeat EMG tests.

It took almost 15 years for a LEMS diagnosis. I was misdiagnosed with Fibromyalgia, MS and other conditions.