Lisa
Forum Replies Created
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Debbie – Yes, it is so very important to be able to trust your neurologist. Unfortunately, it looks as though leaving this clinic is now my only option. The stress that this has caused is almost ironic, seeing as how I’m currently in a period of remission, yet stress seems to trigger so many health issues for me. Ugh. Also, congrats on finding an NP with her own practice! They are some of the best kept secrets in medicine – every NP who has cared for me has been far better than most of my doctors. My daughter is in pediatric nursing and working her way toward DNP. It has been our experience that nursing gives a more human/compassionate/empathetic/realistic approach to medical care. Best regards.
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Wayne – it certainly doesn’t seem like a legal medical practice, does it? I am still in shock. What was expected to be a simple request has me now feeling even MORE uncomfortable with this doctor/clinic/hospital system.
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Robert – No, it was Vanderbilt. Has the same thing happened at Cleveland Clinic? I’m wondering if it’s mainly these enormous medical systems doing this. They really seem to be very controlling and forget that we are people, not numbers. 🙁
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Carol, that was an amazing explanation of the importance of a sleep study. Thank you for sharing that! Unfortunately, the earliest Vanderbilt can get me seen for a sleep study consult (not even the actual sleep study) is September 28th – which is 5 1/2 months from now. And that is via Telehealth! It seems to me a rather long time to wait to even discuss a sleep study. In addition to the MG breathing difficulties, I also happen to have Variegate Porphyria , which can cause breathing paralysis if I happen to be in a state of porphyrin overload. Thankfully, my VP is under control with no major porphyria attacks in a few years. However, Vanderbilt hasn’t addressed my sleeping/breathing in regards to this issue either. It feels like I have 2 strikes against me and no one cares enough to pay attention to the ballgame. Because of my extensive experience in the “rare disease” world, I completely agree about the importance of educating ourselves so that we can then educate our medical team. Sadly, some don’t appreciate an educated patient. And you are 100% correct about the importance of CLINICAL SKILLS, not just test skills or book knowledge. But, all I can do at this point is press on. It has become clear from the replies on this forum, that I will be in better hands by searching out a new neuromuscular specialist. Thank you for your reply and all the best to you on your journey.
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Bernadette, thank you for your kind words and advice. I would also love to be re-evaluated by Mayo. In the meantime, I will keep looking for a neuromuscular specialist who is a better fit for me. I appreciate the encouragement. 🙂
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Very good to know, Amy. Thank you!
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So true, Andy!
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Thanks, Michelle. The neuromuscular specialist I’m currently with is part of the Vanderbilt MDA/ALS Clinic. Maybe I’ll have better luck with a different doctor there or through a different MDA Care Center. Thank you for sharing the link.
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Hi Andy,
The phrase you used, “divorced from the real world”, really hit the nail on the head as far as what I’ve been dealing with. I am at a well-known teaching hospital (Vanderbilt) and this current doctor I have is a Neuromuscular Specialist – yet I am still not comfortable in her ability to pay attention to important details. (Like you, I often have shortness of breath and that has not seemed important to her – but for me, it is rather scary). I am now convinced, after hearing from so many people living with gMG, that I do need to look around and consider finding a new doctor. First and foremost, one who LISTENS. Thank you for sharing!
All the best to you in your journey – Lisa
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Hi Bob,
Surprisingly, this Neuro of mine is at Vanderbilt and is a Neuromuscular Specialist who says she sees at least 2 MG patients each day (her words). She is “an assistant professor in the Neuromuscular Division and sees both neuromuscular patients as well as those that may require botulinum toxin injections”. She also fussed at me for using the word “remission” in relation to a period of time when my MG symptoms appeared to go away/lighten up. Weird, right?? But that’s for another discussion. From the feedback I’m getting from everyone, and my own gut instinct, it looks like it is time for me to search for another neuromuscular specialist – even if that means traveling further away from what’s available to me locally. Finding the right doctor feels like such a “roll of the dice” and it’s definitely a source of stress right now, but thank you for your encouragement because hearing from other MG patients and knowing there actually are good doctors out there who are taking CARE of their patients gives me hope!
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Hi Sue, that sounds like a very scary episode that you’ve come through! So glad your thymoma was found and removed though and also glad to hear of your experience with cpap. I am going to pursue a sleep study. And you are correct about there not being many MG specialists. May there be better days ahead for all of us.
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Robert, yes! Without living in our shoes, there often seems to be a lack of empathy with our struggles. 🙁 Thank you for sharing your experience with Mucinex and Benadryl. I had read that they are contraindicated in MG, which is why I was surprised the neurologist told me they are fine. But I’m glad to know another gMG patient has had success using them without any issues because this current crazy allergy season has me needing a bit of seasonal relief.
With much appreciation, Lisa
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Hi Michelle, it’s nice to meet you! I was surprised she said that too. And she was very adamant about it. I agree with your definition of remission and I’m confused at how she, as a trained medical professional, could argue against the actual medical definition of remission – which says remission is “the reduction or disappearance of the signs and symptoms of a disease”.
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Hi Mike,
Any advice on how to find a support group? I actually asked the neurologist yesterday if she was aware of any support groups in the area (she told me she sees about 2 MG patients/day so clearly there are plenty of us in the area) – but she said no. I’m not on Facebook or anything like that, so any ideas on how to locate a group would be greatly appreciated.
Thank you, Lisa
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Michelle,
Thank you so much for your encouraging words! We definitely need to be strong advocates for ourselves because no one else is going to do it. I am glad someone is finally paying attention to your thoracic mass – thymoma can be dangerous and I am so grateful to the cardiologist who found mine! I understand that everyone wants to be at one of the national clinics – I have reached out to Mayo recently, and will probably be pursuing that more actively from this point forward. Currently I am at Vanderbilt, which gets a lot of name recognition, but as far as my experience here – I would not recommend Vanderbilt to any MG patients. When you only get 30 minutes with your neuromuscular specialist every 4-6 months because they are “so busy”, and then they belittle you for reading information online to educate yourself about your condition because they aren’t educating you themselves – I just don’t consider that quality healthcare.
I hope you are able to find your “angels” to care for you, as well! I would love to hear of your experience going forward, especially if you are able to get into Mayo or Cleveland Clinic.
All the best! – Lisa