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How Would You Rate the Quality of Your MG Care?
Think back to when you were first diagnosed with Myasthenia gravis. You might be familiar with the long wait period to be seen by a doctor. The same goes if you are currently at this stage.
Stay adamant about advocating the severity of MG, and you may get a practice to fit you in reasonably quickly into their schedule. The wait can be a difficult and scary period if symptoms are flaring. Many of us are so relieved to have a doctor begin treating us that we accept it at whatever level of care. We may only know how great and knowledgeable an MG professional should be with something to compare it.
Realistically, few doctors worldwide will dedicate more than a small amount of their time and care toward a rare disease. But dedication to a patient still matters, and being given all information and treatment options is a right everyone should have access to and the opportunity to receive.
How would you rate the quality of your MG care team and doctors? What do you appreciate about your MG health professional, and what aspects would you like to see an improvement in?
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6 Replies
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My situation was very unusual. Apparently I had a small stroke at about the same time. Result was double vision. Looking back on it I was developing fatigue easily. I was very proactive and scheduled an appointment with an ophthalmologist who recognized the symptoms of MG. Summary statement …. early diagnosis and quick treatment is making my life much better. Very happy
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<p style=”text-align: center;”>I’m at the point in my treatment where I don’t know where to go. My first neurologist told me that I was one of the 50% that could be diagnosed with a blood test. Gave me mestonin which fixed my drooping eye for about a day. The eye kept getting worse and worse and I have only been diagnosed as ocular myasthenia. I have weakness in my upper legs and can’t climb stairs without pulling myself up along the railings or I’m exhausted at the top. Eye kept drooping worse and worse. I have three or four prisms in my glasses to keep my vision from being cross-eyed. However when my eyelid closes down to where I see my eyelashes my eye just closes. My doctor would not prescribe anything else basically told me to live with it. I take a path to the right when trying to walk in a straight line and stumble a lot. I got a new neurologist who ran all the standardized tests and found no positive for mg. I have since had an MRI a CAT scan I think it was called a PET scan as well as an EMT on my face and many other blood tests. Really have no answers yet but he did schedule me with a renowned specialist in Richmond. He says he has eliminated most everything which leaves mg left. I’ve been on 20 mcg of prednisone for about a month now and that has made no difference. Over the last two or three months I have found if somebody makes me laugh really hard my droopy right eye closes and my left eye closes and also won’t open voluntarily for about 25 seconds. Starting to scare me quite a bit. I have no answers but at least I have a neurologist who is bent on finding out what is wrong and getting me some solution. My ophthalmologist was going to do surgery on my eyelid but he said he won’t do it until he’s 100% assured that I have myasthenia gravis. Apparently the ice test that they do as a presumptive test has not gone well when I have been there. No solid diagnosis leaves no solid treatment. This has been going on since 2018 or so. Color me frustrated.</p>
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I’m 62 and have only had MG a year now and was diagnosed with the majority of MG symptoms so I have seen many doctors in a short time but overall it still feels like being just another sheep in the band-aid lines with most of the medical professionals that I’ve come in contact with… The medical field as a whole still doesn’t know or understand a lot about MG as it is a rare disease but it’s also been around a very long time in several countries for the few that’ have had it throughout these periods… As more people are diagnosed with MG, it appears we have seen more medical transparency and research progress in just the last 5 – 10 years alone and appears they are getting better and closer all the time…
It also should be noted that MG comes with several related ripple effect type symptoms that require many other medical related services besides your Neurologist and family doctor… Most of them might have heard of MG but still can’t spell it yet sort of speak… They all try to do the best they can based off their medical specialties and their limited knowledge of MG.
So far it seems like there are no long term remedies from these specialty Doctors and feels like they’re just applying another band-aid fix in the battle of the MG war… In other words their specialty services are all they can provide until they find a cure for MG itself. Not to mention that most good Doctors are in very high demand and too overloaded to find time to broaden their knowledge and provide quality patient time and services…
As Covid winds down, I would hope that those doctors that departed from the medical profession during Peak Covid will return soon along with those still working can catch their breath to lend better quality time to research and providing better quality and productive time with their patients.
Through the rapid journey to develop a vaccine for Covid, the medical field should have learned a lot more about autoimmune symptoms and related type diseases. I sincerely Hope that with Gods speed it will generate better knowledge and medical options to better pursue a cure for MG, MS, ALS and other autoimmune related diseases… Just not sure MG has enough transparency yet to qualify for “Warp Speed” vaccination at this juncture and glad they’re taking their time to get the cures for MG right without all the side effects… Just my Two Cents…
Mark
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I feel remarkably fortunate in my journey. At the first onset of symptoms in 2014 I knew nothing whatsoever about MG. I had very swift and severe onset of symptoms and at age 58 I mostly feared I was having a stroke with the vision, swallowing, sided weakness all happing at once. At the ED, once stroke was ruled out the Opthalmology resident after a thorough exam, determined that all my symptoms pointed towards MG. A blood test was ordered and I was AcHr+.
The Geisinger system here in central Pennsylvania was able to get me an appointment with neurology within a week, and my treatment regimen began. As luck would have I had my first myasthenic crisis about 10 later and had my first hospitalization and experience with a vent.
Despite this traumatic first month, I’ve always felt that I’ve received the best care possible. I have a wicked case of generalized MG and thanks to the support of the Geisinger team, my spouse and family I thrive mentally despite the physical challenges the disease has given me. It is also great that despite our wonderful rural setting, Geisinger offers a class of care that has supported me through multiple crisis events, secondary infections, the onset of other conditions, I feel safe and cared for, a state i hope that we all can teach if remission-like periods haven’t come yet.
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My GP first diagnosed my MG which is probably very lucky for me. He referred me to a Neuro who ran some tests and due to the high scores on tests referred me to a well known specialist who is justified in being well known because he is the best. Each time a suitable new advanced treatment becomes known he gets me to the front of the line. I am just doggone lucky. I have had a couple of times of being hospitalized and have had super doctors looking at me for gastro, cardio or whatever is appropriate. I recently had a check up from my GP and he looked down the list I had for him of all my meds and physicians and he said he was amazed by the quality of the docs on my list. Obviously I am able to rate my MG care as the tops.
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I think the quality of my healthcare is good. I have a great CPC for everyday stuff. We PM when necessary. She is aware of all things medical. My Neuro at Debakey VA Hospital who specializes in ALS and has many MGers is a conservative Doc. I believe my med mix is probably pretty good for now. I am considered stable. Have an opportunity to try Vyvgart. We’ll see……
What do you appreciate about your MG health professional, – Both answer my questions and allow me to make the decisions.
What aspects would you like to see an improvement in? I would like them to cure me. 🙂
Scott
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