Have all of the symptoms of MG but every test coming back negative so far!
I would greatly appreciate your help! I have been having symptoms of Generalised MG and am now in a wheelchair 90% of the time. I am off work, have been to hospital twice, and sent home each time with zero treatment. I am waiting on my MUSK results, but all tests show nothing. I have had the following tests: lumbar puncture, MRI, EMG test, all clear. I have been doing some research and it says 10-15% of cases of MG are Seronegative. If I have ALL of the clinical symptoms, is that enough for diagnosis? Current symptoms - can't stand or walk for long. The longer I stand or walk, the worse the symptoms get. Example: If I walk 100 metres, it takes me 4-5 hours to recover. Weakness/heaviness/jelly feeling/cold/tingling/burning pain in both arms and both legs. The less I move, the better I feel. Each morning I wake up almost like brand new, but I only have a few minutes of symptom-free walking before it all starts up again. This has been happening for two months now and I am tired and not feeling like I am being taken seriously is very concerning. Thank you for reading, any help would be greatly appreciated.
Hey! Welcome to our supportive MG community! We are glad you've found your way here 😀
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Unfortunately, most hospitals are not equipped with anything to treat MG or are not aware of how to go about it. Have you gotten testing for Low-density lipoprotein receptor-related protein 4 (LRP4) antibody?
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Have you had an SFEMG test done? "Single-fiber electromyography (SFEMG) is the most sensitive test for detecting neuromuscular transmission impairment, such as in MG. SFEMG may be needed in some cases, especially in cases of seronegative MG. SFEMG is more technically demanding than RNS and is not available at all centers" (https://myasthenia-gravis.com/seronegative). If this test does not detect MG, I suggest a second go of it to ensure there was not a false reading. If no MG is detected, MG would typically be ruled out. "The sensitivity of SFEMG in diagnosing MG was 98% and the specificity was 70%, with a positive predictive value of 79% and a negative predictive value of 97%. Patients with normal findings at SFEMG are unlikely to be affected by MG" (https://www.sciencedirect.com/science/article/abs/pii/S1388245713011760#:~:text=The%20sensitivity%20of%20SFEMG%20in,to%20be%20affected%20by%20MG.).
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Your symptoms sound like MG, but if all MG testing returns normal, you may want to look into conditions that mimic MG. With your symptoms, I suggest pursuing testing for:
ataxia
acute inflammatory demyelinating polyradiculoneuropathy
multiple sclerosis (MS)
Guillain-Barré syndrome
We also suggest discussing the possibility of peripheral neuropathy, carpal tunnel syndrome, Raynaud's syndrome, herniated disks, and diabetic neuropathy pain with your doctor as potential causes of the tingling sensation.- Jodi, Team Member
I am so sorry you are going through this. I too went through this. Try and find a neuromuscular that specializes in seronegative mg. That’s what I had to do. Hang in there. Hugs
