I have symptoms but no answers. Only detective is me. Need help.
I am searching for answers, and either nobody has any idea or they're not talking. This has dragged on for years. I was reading about symptoms and it started to sound like me. But then I already have several diagnoses with overlapping symptoms so it's complicated. I don't even know what kind of doctor I need. I'm hoping someone here can point me in the right direction.
If you are fortunate enough to live in the US, then my advice is to go to the Mayo Clinic. The original location is in Rochester Minnesota but they also have locations in the west and the east. What the Mayo Clinic does better than most other hospitals is getting you a diagnosis. Find their website and apply online, listing all of your symptoms. It is a slow process. They will review your application and form a plan to diagnose you and if they accept you, they will communicate with your insurance company and get pre-approval for tests. It will probably take a month while waiting insurance and scheduling. You will be sent a list of appointments and you will be advised to be in the area for a week. You will meet with the lead physician and discuss your symptoms then you will be sent running around like a chicken with their head cut off trying to get from one appointment to the next. Based on the returns from your first tests, other test may be removed and other test may be added. When you finish that sometimes intense process, you will meet a physician again to discuss your diagnosis and health care plan going forward. How do I know this is how it works? I went to the Mayo Clinic in February 2023 for my MG diagnosis. After a year of my urging, my wife went to the Mayo Clinic a couple of months ago to deal with a worsening chronic pain in various locations of her body. She has been seeing doctors for 20 years for the various pain with the usual recommendations, exercise diet etc. The doctors at Mayo were able to put all of the picture together and she has been diagnosed with a Fibromyalgia. Like MG it is very difficult to get a diagnosis for Fibromyalgia. So to sum it up, if you aren't getting a diagnosis from your other physicians, go to the Mayo Clinic. You will have a diagnosis and it will be the correct one.
Don't give up hope. Contact Mayo and see what they can do. There are probably programs out there to help you pay for medical care. Here is one from an organization called NORD, National Organization for Rare Diseases. Here is the link for financial assistance. https://rarediseases.org/patient-assistance-programs/. I haven't used them personally and I do think income is a primary component so you will surely qualify. There are likely many other programs as well. One more thing, I get emails from the Mayo Clinic all of the time asking for charitable contributions. It is inconceivable to me that they can't help you get assistance.
Hey there, and welcome to our community. I am so glad you found your way here despite the situation. I send my deepest sympathy that you are having to endure these symptoms. Here is a general overview of receiving a diagnosis for MG: https://myasthenia-gravis.com/diagnosis & https://myasthenia-gravis.com/doctor.
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To break it down, the first step is blood work to check for the common MG antibodies that, if positive, warrant a diagnosis of MG: (1) Acetylcholine receptor (AChR), (2) Muscle-specific tyrosine kinase (MuSK), (3) Low-density lipoprotein receptor-related protein 4 (LRP4). If those are all negative, one can still have MG, referred to as seronegative MG.
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To check for seronegative, a doctor will usually do nerve conduction studies, electromyography (EMG), and repetitive nerve stimulation (RNS). The single-fiber electromyography (SFEMG) test is the most sensitive, but it is more technically demanding than RNS and is not available at all centers.
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However, you mentioned your heart devices, which could eliminate the possibility of the above tests. At that point, a doctor will rely on your symptoms and should do the ice pack test to diagnose seronegative. With this test, your eye will be covered with an ice pack for 2 minutes to see if your eyelid strength improves. Improvement means your symptoms may be related to MG.
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Some MG doctors are not willing to treat patients with seronegative MG (typically if they do not have much experience or no experience with seronegative), or a doctor may not feel confident diagnosing you with seronegative MG without the EMG or RNS test. But if your blood work is negative but the ice pack test suggests MG, and you run into this problem with doctors, have hope that the right doctor is out there who will treat you. (https://myasthenia-gravis.com/living/specialized-doctor-benefits & https://myasthenia-gravis.com/living/finding-doctor-specialists).
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Which MG-like symptoms are you currently experiencing?- Jodi, Team Member
Hi, thanks for responding. I have an appointment with a Neurologist, been waiting for months. But I hope they have other tests to try besides that one. I have 3 heart implanted devices, and the shocks could kill me. Then it won't matter what I have. I run into this problem a lot with my many diagnoses. I even went through surgery for another device called the Watchman. They aborted the implantation because my heart internal orifice was too small for the device. I hope the Neurologist is good and has a plan "B". Thanks for the information though.
Hey there, and welcome to our community. I am so glad you found your way here despite the situation. I send my deepest sympathy that you are having to endure these symptoms. Here is a general overview of receiving a diagnosis for MG: https://myasthenia-gravis.com/diagnosis & https://myasthenia-gravis.com/doctor.
---
To break it down, the first step is blood work to check for the common MG antibodies that, if positive, warrant a diagnosis of MG: (1) Acetylcholine receptor (AChR), (2) Muscle-specific tyrosine kinase (MuSK), (3) Low-density lipoprotein receptor-related protein 4 (LRP4). If those are all negative, one can still have MG, referred to as seronegative MG.
---
To check for seronegative, a doctor will usually do nerve conduction studies, electromyography (EMG), and repetitive nerve stimulation (RNS). The single-fiber electromyography (SFEMG) test is the most sensitive, but it is more technically demanding than RNS and is not available at all centers.
---
However, you mentioned your heart devices, which could eliminate the possibility of the above tests. At that point, if the blood work for antibodies was negative, a doctor will rely on your symptoms and should do the ice pack test to diagnose seronegative. With this test, your eye will be covered with an ice pack for 2 minutes to see if your eyelid strength improves. Improvement means your symptoms may be related to MG.
---
Some MG doctors are not willing to treat patients with seronegative MG (typically if they do not have much experience or no experience with seronegative), or a doctor may not feel confident diagnosing you with seronegative MG without the EMG or RNS test. But if your blood work is negative but the ice pack test suggests MG, and you run into this problem with doctors, have hope that the right doctor is out there who will treat you. (https://myasthenia-gravis.com/living/specialized-doctor-benefits & https://myasthenia-gravis.com/living/finding-doctor-specialists).
---
Which MG-like symptoms are you currently experiencing?- Jodi, Team Member
I am from Sweden and would suggest seeing a Neurologist, they may suggest testing with monitored electric shocks, these measure the reaction time from the firing to the muscle reaction, this is usually 10 rapid fire shocks which can be uncomfortable. If they show a reduced reaction time from the first to last shock it is an indicator you have MG. This is one of the standard tests performed here as it is gives an accurate result, however I do not know if this is a standard test in other countries.
