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Anngail Norris replied to the topic LIVING WITH LEMS AND CANCER in the forum Introductions 5 days, 9 hours ago
Hello Michael. I am sorry to hear that you are dealing with these issues. You did not mention whether or not you are on medication for LEMS. The chemo and the Rituxan are more for your cancer than for LEMS, although it has recently been discovered that Rituxan can make a difference too. I find it unusual that you got sick from Rituxan. I have…[Read more]
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Anngail Norris replied to the topic Have you been drinking, or is it just your LEMS walk? in the forum Living With LEMS 2 weeks, 2 days ago
I love this forum! Sometimes I think I’m making a big deal about insignificant occurrences and then I read on here about others with the same issues and although the problems don’t go away at least I know I’m not crazy. (Well the jury is still out on that!). But yes, yes, yes, sometimes I think I’m drunk even though I haven’t had a drink in m…[Read more]
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Anngail Norris replied to the topic Rituximab and COVID-19 Vaccine Response in Autoimmune Diseases in the forum Rituximab (Rituxan) 1 month, 1 week ago
Here is an update regarding my Covid antibodies. When I first had the SARS lab work, my value was .82, which was too low to categorize. After the Evusheld shot that I had about a month ago, my value is 571. That is categorized as “positive”. So the shot did what it was supposed to do. My doctor said I would probably need to repeat the lab work…[Read more]
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Anngail Norris replied to the topic To Cane or Not to Cane? in the forum Living With LEMS 1 month, 1 week ago
I’m sorry that you are having these mobility issues. At the same time it’s a relief to know that I am not the only one to feel as if I’m drunk all the time! When I first had symptoms, I went from using a cane to a walker to a rollator and finally a wheelchair. It was all very demoralizing. When I was finally diagnosed and started on medica…[Read more]
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Anngail Norris replied to the topic Rituximab and COVID-19 Vaccine Response in Autoimmune Diseases in the forum Rituximab (Rituxan) 2 months ago
How timely! I just finished a 4 week protocol of Rituxan infusions. I have lymphoma in addition to LEMS, and this is the 5th round of Rituxan I have had since 2004. I may have previously mentioned that in 2020 I had a round of Rituxan, since LEMS could be a precursor to Small Cell Lung Cancer. I have since had all 4 Covid injections. My…[Read more]
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Anngail Norris replied to the topic Getting a "Divorce" From Your Neurologist in the forum General Questions and Topics 2 months ago
I think the most important thing I learned in my quest to figure out what was wrong with me is that you MUST be an advocate for yourself. Too many people think that all doctors are godlike and whatever they say is to be taken as gospel. But they are just like you and me, with more education. There is a reason that it’s called the PRACTICE of M…[Read more]
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Anngail Norris replied to the topic What Was Your First Symptom? in the forum General Questions and Topics 2 months, 1 week ago
Very interesting. My first symptoms were also not being able to walk. The first time it happened I was at a rec center watching a swim meet and I practically had to crawl through the parking lot to get to my car. I still don’t know how I made it. This was in April or May of 2019. I endured this for a few weeks and determined that I needed to see a…[Read more]
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Anngail Norris replied to the topic Transitioning from IVIG to Rituxan in the forum IVIg and Plasmapheresis 4 months ago
Ashley,
After my recent visit with my oncologist, I had a CT scan and my lymphoma appears to be stable although there is still evidence of the BALT (bronchial associated lymphatic tissue). Because of this, I am eligible insurance wise to undergo a round of Rituxan, which is administered once a week for 4 weeks. This will address both the Lymphoma…[Read more]
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Anngail Norris replied to the topic Transitioning from IVIG to Rituxan in the forum IVIg and Plasmapheresis 4 months, 1 week ago
Here’s a brief follow up. I saw my oncologist today, and we are considering a new round of Rituxan. I have a few questions for those of you considering this also.
Price, when you mentioned having an infusion every 6 months, was that because it was for LEMS? The infusions I had were always a round of 4 spaced one week apart. If necessary it co…[Read more] -
Anngail Norris replied to the topic Transitioning from IVIG to Rituxan in the forum IVIg and Plasmapheresis 5 months ago
I want to add something important to my previous post. Before transitioning to Rituxan, you need to be sure you are up-to-date on Covid vaccinations. Rituxan cam compromise the effectiveness of the Covid vaccine. You should have your latest vaccine at least two weeks prior to Rituxan infusions. I myself have had 3 shots of vaccine and my doctor…[Read more]
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Anngail Norris replied to the topic Transitioning from IVIG to Rituxan in the forum IVIg and Plasmapheresis 5 months ago
I would like to provide information about Rituxan although I was not receiving IVIG infusions. The Covid pandemic had just started at the same time I was diagnosed with LEMS. Not only was plasma hard to come by, but I was really leery about using any organic substances.
In 2004, I was diagnosed with Lymphoma. It was unusual because there was j…[Read more]
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Anngail Norris replied to the topic Sharing experiences of transitioning from Ruzurgi to Firdapse in the forum Amifampridine (Firdapse and Ruzurgi) 5 months, 2 weeks ago
I am also in the process of transitioning from Ruzurgi to Firdapse. I have been taking Ruzurgi for 2 years. I am not a big fan of change. (Who is?) but I must say that the staff at Anovorx has been extremely helpful and reassuring. They contacted Medicare and my supplemental insurance. I have a grant to cover the co-pay and they dealt with that…[Read more]
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Anngail Norris replied to the topic Blood pressure medication in the forum General Questions and Topics 6 months, 1 week ago
I have been taking Metoprolol 25mg for the past two years, since my LEMS diagnosis. My doctor started me on it because with LEMS one of my symptoms was that my heart would race when I walked or did any physical activity, like getting out of bed or standing up to brush my teeth. It was meant to slow my heart rate, since I didn’t normally have h…[Read more]
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Anngail Norris replied to the topic How Long To Get Your LEMS Diagnosis? in the forum General Questions and Topics 6 months, 3 weeks ago
After reading about these lengthy diagnosis times, I feel fortunate that mine only took a year. I saw about nine different doctors, all of whom told me all my tests were normal. I insisted that not being able to walk was NOT normal. I was sent for physical therapy also. Finally, my primary doctor got me in to see a specialist for POTS, which I…[Read more]
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Anngail Norris replied to the topic The Stress When Your Med Supply Is An Issue (Ruzurgi) in the forum Amifampridine (Firdapse and Ruzurgi) 10 months, 1 week ago
I have been using Ruzurgi for almost 2 years, and it has changed my life. Before Ruzurgi, I thought I was going to spend the rest of my life in a wheelchair. Now my mobility is almost normal.
I just had a phone call from PantheRx, the pharmacy that is the sole supplier of Ruzurgi. There was a lawsuit from Catalyst Pharmaceutical (Firdapse) against…[Read more] -
Anngail Norris replied to the topic FIRDAPSE side effects: Does everyone experience them? in the forum Amifampridine (Firdapse and Ruzurgi) 1 year, 3 months ago
I am not taking Firdapse. I am taking Ruzurgi and have been on it for over a year. It took a few weeks to adjust the dosage, but I take 20 mg four times a day. I do not notice any lag time waiting for it to “kick in” . I do get the tingling sensation around my mouth and my nose gets cold. Also, I have had a runny nose since I started the medic…[Read more]
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Anngail Norris replied to the topic If you’ve had physical therapy, raise your hand! in the forum General Questions and Topics 1 year, 5 months ago
🙋♀️
I had PT pre-diagnosis also. I had seen many doctors trying to figure out what was wrong with me. One orthopedic doctor first sent me for epidurals which did nothing and then for PT. The only benefit of the PT was that I got tips on how to deal with my problems. For example, getting a chair in the shower since I couldn’t stand up for more t…[Read more] -
Anngail Norris replied to the topic Advocating for yourself and your LEMS! in the forum General Questions and Topics 1 year, 5 months ago
Being diagnosed with LEMS was indeed an eye-opener for me. I was diagnosed in January of 2020. The previous 10 months had been spent going to 9 different doctors from orthopedic to cardiologist to pulmonary to neurologist trying to figure out what was wrong with me. All lab tests, X-rays, stress tests, etc. came back as normal. I kept telling…[Read more]
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Anngail Norris replied to the topic Titrating Firdapse (Amifampridine) in the forum Amifampridine (Firdapse and Ruzurgi) 1 year, 6 months ago
I started using Ruzurgi about 10 months ago. It has changed my life! I started out on a minimum dose of one 10 mg tablet 4 times a day. It wasn’t enough. I did a little research. Ruzurgi was initially developed for ages under 17. I am 73 and weigh a lot more than any teenager I have ever met! So, in conjunction with my doctor, I gradually incr…[Read more]
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Anngail Norris replied to the topic Immunosupression Concerns in the forum Immunosuppression 1 year, 6 months ago
I was concerned about receiving the Covid vaccine because I was recently treated with Rituxan. My oncologist confirmed that as long as there has been 3 months from the last infusion of Rituxan that I am good to go for the vaccine. I don’t know about the opposite. If you get the vaccine then do you have to wait for Rituxan? I do know that the CD…[Read more]
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