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Neurologist Visit – “You Look Great!” Pt. 1
Yup, that’s what my neurologist said at my 6 month visit last week. She told me she was thinking about REDUCING my medications because, “You’re doing so good.”
This is what we, as LEMS patients, deal with. Lambert-Eaton can be the invisible disorder when you’re doing well. Have you experienced this? It’s exasperating.
In my case, she saw me just 4 days out from my IVIG. The goodness of immunoglobulin was on full. It doesn’t help that I have all my hair, look tanned (because I drive a roadster), and my legs aren’t atrophied. I can’t help that I have good genes and my legs are the product of bicycling ten to fifteen thousand miles a year in years past.
Add to all of the above, my neurologist wasn’t around in 2009 when I had my most severe crisis, unable to walk, and leaving the hospital in a wheelchair.
What are we to do about this, coming from my LEMS diagnosing neurologist no less? I made sure to give her detailed descriptions of recent flares I’ve experienced. I told her how effective IVIG is for me. Above all, I told her NOT to lower any medications. Finally, she and I agreed to schedule my next visit in my fourth week after immunoglobulin. This will hopefully let her see me when my LEMS can be most problematic as the antibodies wane.
LEMS is a challenge, even with our doctors. Sheesh. -
6 Replies
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Oh Price, I feel your frustration! AND you have an official diagnosis from a neurologist who is supposed to understand the disease. I’M still undiagnosed. The more specialists I see, the more I realize they are removed from how different diseased affect the patient in everyday life. They don’t seem to understand how the medications they prescribe affect us-both in good ways-the IVIg magic elixir and the bad ways, side-effects of mestinon and steroids. They evaluate cases through test results and 15 minutes snippets of time every 6 months. They don’t see how we live everyday with the disease and how each day is different. They don’t realize how much self-care and effort goes into maintaining Quality of Life. I just got told yesterday that since I no longer show P/Q VGCC antibodies, that I don’t have an autoimmune disease and she is discontinuing IVIG. I KNOW that it is helping me but she won’t listen. So now I have to find a neurologist who will..Why is being an advocate for trying to be healthy SO HARD!
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@searching4answers does your neurologist know that being on IVIG and receiving pooled antibodies, your blood antibodies profile (VGCC) would be altered. The accurate test would be the one taken pre IVIG. I’ve only had one LEMS blood test sent to Mayo which was positive.
Yes, it’s frustrating that they make treatment decisions, seeing us for less than an hour every 6 months. If you go in feeling good, it’s a difficult sales job to convince them what it takes to do that, and how opposite it can be. Hang in and be proactive!
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Dear Price & Searching4Answers,
I too have been trying to get my provider to understand that I’m not doing well a lot of days, but they don’t seem to get it. I want to try something that will help me be more functional most days, not just a few days a month. I get so tired trying to decide how to approach a doctor (or in this case the nurse practitioner, as my doctor retired) & what to suggest they try next. Life is too short for us to have to fight for every little thing that might help us. Last week, my oncologist seemed to be suggesting that I need to find a new doctor to replace her. I don’t know if I made her mad by changing neurologists, as she flat told me not to do so, but with having kidney cancer, I thought that she was going to try to help. Now, I don’t feel that I can trust her to have my best interests in mind, so I’m stuck with looking for another oncologist willing to take a LEMS patient. It’s 2 steps forward and 1 step back, all the time, and with LEMS, the stress is definitely bad news. Joyce Crawford
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@joyce275 it’s disheartening to hear your oncologist wants you to find another. I hope you can stay positive (difficult I know) through this and find doctors you trust, can work with, and have good rapport. I hope the medical system you are in has options. Me, I’m in the VA Dallas and I have no options. We have only one neuromuscular specialist here, mine. I have great rapport with her, we just butt heads. LEMS is so rare, doctors just don’t have much experience with us. I know a couple who’ve seem many LEMS patients but don’t have access to them.
Stress is never a good thing. I hope you can move quickly to find new doctors. Keep us posted please!
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It is so frustrating that others seem to think you are exaggerating your condition. Other than looking a bit older, I look the same as I did a few years ago when I was walking at least 5 miles a day and full of ambition. Entered LEMS and now I struggle to walk, and normally at that, for a very short distance. Why don’t I get out in the evenings for functions? I am so 😩 exhausted and weary, I’m lucky to make it to bed
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@dordem Dorothy, if only my neuro could see me drag myself to bed, exhausted, over and over. I told her I should give her a call every time this happens, and she’d understand very quickly what LEMS can be like.
Given the number of replies I’ve received on this topic, the “invisibility” of LEMS happens to so many of us.
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