Wanda Grischkowsky
Forum Replies Created
-
Yes, I experience mouth sores. Once I was prescribed a medication for them.
-
Previously I was getting Privigen a total of 120 grams over 2 days. The max rate was too much for me. Currently my dose has increased to 160 grams over 3 days with a rate of 98. We have tried increasing my rate but it causes my blood pressure to become dangerously high as well as worsening side effects.
A three-day infusion is hard. -
Best wishes, Price.
-
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.
-
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 to go on excursions, select the earliest time as possible before the heat gets too bad because Caribbean heat is very hot and humid. I mostly go on tours and select “light activity” excursions. Don’t forget to pack a neck fan, cooling cloth and a hat. Two bottles of water will usually be in your stateroom when you first arrive, but you will need to purchase additional.
Liquid I.V. does help, so please stay hydrated. Before disembarking to go on excursions, etc. grab water as you leave the ship. Once I return from excursions, I normally take a late afternoon nap because by then my energy is very low and I am pretty weak. Because I use a cane and sometimes have to use a wheelchair, the staff are very attentive and they help me to avoid lines.
Your itinerary probably includes a beach day at the cruiseline’s private island. If so, try to get off the ship early to claim a beach chair under a shady tree. Save your energy by riding the cruise line’s shuttle to and from the ship and beach.
Although the ship has a lot of food, pack plenty of snacks to take with you while on excursions.
Have fun and stay safe. -
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 type 1 diabetes. Sadly I am now on insulin.
Too many conditions at one time…. now about to start Azathioprine (Imuran) due to worsening weakness and fatigue.
-
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 I am trying to give my body time to adjust to Firdapse.
-
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 weeks, but am experiencing tightness and pressure in my chest during and after each infusion. Any suggestions?
-
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 recommended I take a low dose 3 days per week. It is very difficult when doctors do not understand LEMS.
-
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.
-
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.