Waiting on lab results and not fully diagnosed
Today is my first day on this forum. I need some advice. I have been symptomatic since Janaury. I have seen every specialist known to man. We have ruled out MS, lupus, and RA. After doing my own research and after realizing my right eye issue is most likely Ptosis, I believe I have MG. I failed 7 out of 10 muscle test on the EMG test. My symptoms started with shortness of breath, inconsistent blood pressure, weird feeling in eye, and fatigue. Then went to pins and needles feeling in feet, legs, hands, arms, and face. Then extreme muscle fatigue that gets worse the more I use my muscles. Sometimes trouble swallowing, chewing fatigue, arms and legs. Get tired while carrying 5 pounds a short distance. I am light headed at times as well. I have always had blurry vision in short distances. Also, have some facial fatigue but no drooping in the face. Please help me. I am having to leave work early every day. It is affecting every aspect of life. Does this sound like MG? Worried my test will come back negative with no confirmation. Has been a long process. Any input is apprciated
Welcome to the community. Thankful Jodi was able to give you a lot of information. I empathize with you. It's difficult to experience these symptoms and have no clear diagnosis. In the meantime, are you currently taking any medications that can help with your symptoms to give you some relief? I used to leave work early as well due to the fact that I had slurred speech and double vision. It took 3 months for me to get properly diagnosed. All the testing can definitely make you feel like a lab rat (for me it did). We are all here to support you. I hope you get information you are looking for. - Jazmin, Team Member Thank you for the response. It is very helpful. I am on Prozac and vitamin D. My vitamin D has been low for a while. My neurologist has been less than helpful so any information is greatly appreciated.
If your vitamin D has been low, you may find this study interesting, https://www.sciencedirect.com/science/article/abs/pii/S0967586817314169. - Jodi, Team Member
Welcome to our community! Are you currently on any other medications or treatments for other conditions? If so, it could be triggering the pins and needles sensation or the start of the MG symptoms.
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It certainly sounds like you have a high potential to have Myasthenia gravis. MG is most typically confirmed with blood tests, a trial with mestinon, and imaging.
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"EMG can be used in the diagnosis process, but "EMG is an electrical test of your muscle cells. RNS (repetitive nerve stimulation) is used most often for people with generalized MG...Some people with MG may not have a positive RNS test or other findings on standard NCS and EMG tests. An even more sensitive test, called single-fiber electromyography (SFEMG), may be needed in these cases. SFEMG is a more sensitive test but is not as widely available."
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Blood tests check for the antibodies
Acetylcholine receptor (AChR)
Muscle-specific tyrosine kinase (MuSK)
Low-density lipoprotein receptor-related protein 4 (LRP4)
"Around 8 out of 10 people with MG will have AChR antibodies in their blood. Only 1 out of 10 will have the MuSK antibodies, and even fewer will have LRP4 antibodies.
Roughly 6 out of every 100 people with MG will have seronegative myasthenia gravis, meaning they have no common antibodies, https://myasthenia-gravis.com/blood-tests.
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"CT and MRI scans will help show if the thymus gland is unusually large or whether it has a growth called a thymoma." This can help confirm a seronegative MG diagnosis. However, only up to 15% of people with MG have a thymoma present.
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"Acetylcholinesterase inhibitors are a type of drug that improves nerve signals to the muscles. These drugs work against MG by making the signals from your nerves to your muscles last longer. The number of doses you will need each day depends on your symptoms. Pyridostigmine (Mestinon®) is the drug usually recommended for people with MG" https://myasthenia-gravis.com/diagnosis & https://myasthenia-gravis.com/treatment.- Jodi, Team Member
