Anngail Norris
Forum Replies Created
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I kind of walk like a penguin. It’s hard to keep my balance so I take smaller steps wider apart and with the side to side motion shown here. I’m not sure it’s my hips but my balance that is my problem.
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I just got a smartwatch but haven’t started using it yet. So I can’t comment on the apps. But I’ll tell you why I got it. A few weeks ago I had a seizure of undetermined cause. Firdapse can cause seizures, but I’ve been taking it for 3 years with no problem. I ended up on the floor in my family room. I managed to reach my phone and called 911.
Since I live alone, my daughter wanted me to get a life alert or something like it. These are not cheap. There is the initial cost of the equipment and a monthly fee of $30-$40 for the service.
Black Friday came and Verizon was having all these fantastic promotions. I got a new iPhone and the smartwatch was FREE. I do have to pay for the phone line. You can program the watch to call 911 and another emergency contact by pressing on a button on the watch. Faster than a call center that has to locate emergency services.
I hope I never have to use this feature, but it gives me and my daughter peace of mind knowing I have it.
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I started having symptoms in April 2019. At the time I had no idea why I couldn’t walk without having palpitations and why I couldn’t stand up. I started seeing doctor after doctor to figure out what was wrong. I keep getting the same answer – all tests were normal. I kept insisting it was NOT normal that I couldn’t walk. My primary doctor did some research and thought I might have POTS. I called a specialist and got an appointment for December. December of 2020! That was a wait of 15 months! I appealed to my primary doctor, who made the call herself and arranged an appointment for January 2020. I had a LEMS diagnosis by February 2020 and started medication a few weeks after that. The most important lesson I learned throughout this experience was that you must advocate for yourself. No one cares about the solution to your problems more than you do. The old saying “The squeaky wheel gets the grease.” is really true.
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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 lymphoma and since 2004 I have had 5 rounds of Rituxan treatments, 4 sessions each time, and I have never been sick from it. I am not a doctor, but I’ve been told that although there is no cure for LEMS it can be managed with medication. The drug of choice is Firdapse. (Amifampridine) This drug has saved my life. 2 years ago I was in a wheelchair and I couldn’t stand up long enough to brush my teeth. It took about two weeks to find the correct dosage of Firdapse, but it has given me my life back. I can walk, stand up, take a shower, although I still have to be careful because LEMS can cause mobility issues. Being tired is also a symptom of LEMS. You need to stay hydrated and get plenty of rest. There is good information about Lambert-Eaton online that can help you understand the disease and what to expect. And continue to access this forum. You’ll find that your symptoms and concerns are shared by many. Best wishes to you.
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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 many many years. I trip over my own feet constantly. Especially at home getting up from a chair or turning around. That’s my stumble walk. But I find that when I am outside walking it helps to do a sort of waddle, although I liken it more to a penguin. Have you ever watched a penguin walk? That’s me! Recently I have started using a cane again if I know I am going to walk more than 25 yards. It helps to stabilize my movements. And I also find that walking slowly helps to control my stumbling. It’s hard to get used to walking slow but it does help. Having spent some time in a wheelchair prior to my diagnosis, I’m just so grateful that I can walk again so if I seem a little drunk, so be it.
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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 medication I was so thrilled that I was able to walk unassisted. In fact, about 6 months ago I was having lunch with a friend who had hip problems. Since I wasn’t using it anymore, I gave her my cane. It was one of the fancy ones from Amazon. For the last month or two, I am having new mobility problems. I haven’t fallen, but I tend to hang on to walls or tables as I walk. Outside is not great. About two weeks ago my daughter asked me why I wasn’t using a cane. I was too embarrassed to tell her it was vanity. Plus, I didn’t want to admit that I was having issues. Well, I bought another cane. I don’t use it often, but it’s sort of a security blanket. I know I can walk without it, but I admit that it does steady me. I just need to get over myself and do what’s best for my health and safety.
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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 oncologist was curious about this very question. What effect does the Covid vaccine have on Rituxan and vice versa. My doctor ordered lab work to determine the level of my Covid antibodies. The result was “equivocal” which means there were not enough antibodies to determine a reading. It is undetermined whether this is because of LEMS or possibly Rituxan. So the doctor ordered a shot of Evusheld, which is supposed to boost antibody production. I have not had a repeat blood test yet, but I have an appointment with my primary doctor the beginning of July and will have the test repeated at that time.
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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 Medicine. After 9 different doctors, not all neurologists, I was fortunate to find someone who took the time to actually listen to me. More than 15 minutes! He has been willing to work with my other doctors to find the best solutions for my treatment. And he values my input as well. I encourage everyone to stand up for yourselves. Don’t feel that you are “stuck” with a doctor that you don’t believe in.
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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 doctor. I started seeing every doctor you can imagine, as I know you all did too, and finally found a specialist by December that agreed that not being able to walk was not normal. He was actually a POTS specialist, but took my symptoms as a challenge and by February I had a LEMS diagnosis. The only stress I was under, however, was that I couldn’t walk. Apparently it is very common that not being able to walk is a major symptom since LEMS attacks large muscles first.
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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 and the LEMS. Fortunately, or unfortunately as the case may be, I have both an oncologist and a neurologist. They have been working together to determine my treatment. Rituxan is normally considered in the same category as chemotherapy, although it’s really not. So I can understand why a neurologist would not want to take responsibility for its supervision. I would assume that oncologists are more familiar with its use and possible side effects.
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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 could be repeated in 6 months, but as I mentioned mine were in 2004, 2006, 2016, and 2020.
Also, if you are still considering this, who would administer the infusions? Do you have an oncologist or would your neurologist supervise the process? It’s important that the procedure is handled by a doctor or infusion center that is familiar with administering the drug because there can be side effects, such as muscle spasms, chest pain, nausea and dizziness.
Anyway, there is a lot of information online to help make an informed decision. -
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 wants me to have a 4th before more infusions.
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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 just a tumor in my lung. Rituxan was relatively new, having received FDA approval in 1997. Its uses were limited at the time.
Fast forward to present day. Rituximab is used in many more instances and for many more diseases. When I was diagnosed with LEMS in 2020, my oncologist and my neurologist conferred and thought that since LEMS can be a precursor to Small Cell Lung Cancer that I could benefit from a round of Rituxan, even though I did not have SCLC. At the same time, I started taking Ruzurgi. So I’m not 100% sure which helped more, the Rituxan or the Ruzurgi
In recent weeks I have been experiencing some weakness in my legs again and some mobility issues. I have an appointment with my oncologist in a few weeks and we will be discussing another round of Rituxan. It’s been 2 years since my last treatment. One of the benefits of Rituxan is that you can have it periodically. I had infusions in 2004, 2006, 2016, and 2020. The first 3 were for Lymphoma. The last was for LEMS.
I think anyone who is considering Rituxan should go for it. The only side effect I ever had was because you have to take Benadryl to avoid allergic reactions and that makes you/me really tired!
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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 also. So from a staffing and assistance standpoint I have been very satisfied.
I have not started taking Firdapse yet since I still have Ruzurgi left. When I first started taking Ruzurgi, I also had Rituxan infusions, which added to the treatment. I have Lymphoma in addition to LEMS, so my risk of SCLC comes into play. I will be considering a round of Rituxan before I start Firdapse. I’m a little anxious about changing meds, but in this case there isn’t a choice. As “they” say, it is what it is. -
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 high blood pressure. I have not noticed any worsening of symptoms because of this.
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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 didn’t have. But this doctor took my situation as a challenge. It only took 3 visits for him to provide the LEMS diagnosis. Now I take Ruzurgi, and am having separation anxiety at the thought of changing medication!
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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 Jacobus Pharmaceutical (Ruzurgi) regarding patent infringement and Jacobus lost. For now, Panther is only sending refills as patients run out of medication. I was supposed to get a shipment tomorrow and it is being pushed back a week. The pharmacist did not know if there will be further repercussions due to the lawsuit. This is very distressing. Medicare, and my supplemental insurance pay most of the monthly costs, and I have a grant from NORD that covers the copay. Firdapse is about twice as expensive as Ruzurgi, so if I have to change meds I don’t know about paying for it. To say this is stressful is an understatement! -
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 medication. No stomach issues. Sometimes at night my vision gets a little blurry. I still get a little wobbly at times, but before Ruzurgi I thought I would be in a wheelchair for the rest of my life. This medication has changed my life.
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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 than 2 minutes. Or convincing me that it was okay to use a cane, then a walker, and finally a rollator. (I don’t use any of these anymore thanks to Ruzurgi.)After almost 3 months with no progress, they fired me! The doctor who finally diagnosed my LEMS laughed when I told him about the PT.
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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 the doctors that not being able to walk or stand up was definitely not normal. My primary doctor finally got me in to see a neurologist who is a POTS specialist. He is the one who finally diagnosed LEMS.
But the frustration didn’t stop there. I was prescribed Ruzurgi. My pharmacist called to tell me not only could he not get it, but his broker couldn’t get it, and if they could my insurance wouldn’t cover it and it would cost me $8,500 a month. I tried Mestinon, but it did nothing to help me.
I then called Jacobs Pharmaceutical who connected me with PANTHERx, and they took it from there. They got approval for Ruzurgi from Medicare, from my supplemental insurance, and then connected me with NORD so I could get a grant to pay the balance of the copay.
None of this would have happened if I hadn’t taken the bull by the horns. Too many people accept what doctors tell them without question and without research concerning their diagnosis. We have to remember that it is called a medical PRACTICE. Since LEMS is so rare, we can’t expect even the best doctors to know about it. I have seen 3 doctors in the past several weeks for other reasons who had no idea what it is.
So, yes, the biggest revelation I have had through all of this is that you MUST be an advocate for yourself. No one else is as interested in your health as you are. -
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 increased the dosage to (2) 10 mg tablets 4 times a day. That is the optimal dosage for me. It’s really trial and error.
I also experience the tingling around my mouth and nose, and sometimes my teeth hurt. But I too tolerate this because of the wonderful benefits of the medication. -
Thanks Ashley. I see my primary doctor in a few days, but the appointment with my neurologist isn’t until the end of February. I asked if he wanted to see me before that but he said unless I have more problems I could wait. Knowing him, I would wager that he wants to do some research before seeing me. I am feeling better. I am at home. But there is a certain amount of anxiety regarding the possibility of this happening again. The studies have shown that less than 2% of people taking amifampridine have problems. Hopefully this was a one off and hopefully it has nothing to do with Firdapse.
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Thanks for your response. I have actually read this information in the past, when I first started taking Ruzurgi. The missing pieces of the puzzle now is that I have been taking amifampridine for almost 3 years with no side effects whatsoever. Not even a stomach ache! So I’m taking Keppra twice a day just in case. I don’t know if they will ever figure this out, since hopefully it won’t happen again.
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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 and injection in about 6 months. The pharmacy at the hospital (Northwestern Memorial in Chicago) investigated if there were any contraindications between LEMS, Firdapse, Covid vaccines, and Rituxan and did not find anything. In my non-medical opinion, I think that since LEMS is basically antibodies not acting like they are supposed to (the little devils!) that everyone should ask their doctor to do the lab work to see if they have Covid antibodies. I had 4 vaccine injections and my Covid antibodies were still almost non-existent. Much better now. I hope this information is valuable.