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IMy nane've just joined. I was originally diagnosed 1996 to include SLE Lupus, MCTD. Both gone untreated and rediagnosed June 2023. I've begun seeing a neurologist but no treatment has been offered. I was hospitalized may 23, 2023 due to renal failure and had lost ability to walk more than a step or two, falling and lost total sight in right eye. After many blood transfusion to hemoglobin drop to critical and was in system failure. It took weeks to walk and still totally blind in right eye and brain lesions. My spine hasnt been checked for lesions. ms diagnosed after 2 wks in hospital and spinal tap. Over the years I just chaulked up to symptoms of lupus, fibromyalgia myofacial syndrome, chronic fatigue, copd, spasms and numerous other issues. Being diagnosed with MS helps explain my symptoms. Now if I can find a Dr to follow and treat not only the MS but also the lupus.
You probably want to make sure you have a good Rhumatologist for the Lupus and great Neurologist for the MS—-ideally doctors in the same network who may actually correspond with each other. You have been through an awful lot! It is a shame that the MS portion was perhaps hidden for quite a while. The main thing is to talk with your Neurologist about your MS treatment options. I hope you get some relief soon. Thank you for sharing on this site—I bet you will find others who had secondary conditions that masked MS for many years. I can understand how that makes it hard for doctors to look further—once you have a diagnosis that COULD account for your symptoms. I was evaluated for lupus around 10 years before my MS dx. So, yeah, I think it was probably MS even back then.