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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Especially if we never got a brain MRI as part of the ME/CFS diagnostic processAbout 20% of the patients treated by doctors specializing in MS do not meet strict clinical definitions of MS. I don't say all "CFS" patients are like this, but it is definitely possible for thousands of patients in this diagnostic gray area to be labeled ME/CFS patients by mistake.
I notice a lot of similarities between MS and ME/CFS. Is it possible some ME/CFS folks might actually have MS? What are the more significant differences in symptoms? Is there a definitive test for MS? Any thoughts ....
I was diagnosed with a three-week "complicated hemiplegic migraine" (sans headache) several years before ME onset, where the right side of my body went a bit numb. It wasn't proper paralysis, though using that side of my body was difficult when I couldn't detect sensory feedback properly. I tended to trip on stairs if I wasn't careful, and I couldn't carry paper in my right hand without either dropping or crushing it, because I couldn't feel how firmly my fingers were pressed against it.MS is supposed to cause one-sided temporary paralysis, I believe, whereas ME patients often have bilateral problems.
Well you should rely on a doc for diagnosis, and not other patients you met on the internet. But you knew that.I have not had any profound one sided numbness, or numbness that lasts more than a few minutes after shaking it off somehow. And after 14 years of these symptoms they are not getting any worse, unfortunately not getting any better either. So I assume I can rule out MS.
I understand that. Totally get it. But I have to believe something useful will happen.It feels hopeless
I recall reading something from an MS specialist a long time ago. Some patients clearly have ME, others clearly have MS, but in between are a group you could diagnose either way. Its not clear cut.
Generally, they are told the treatment would be worse than the disease.The folks in the in-between group, do they respond to MS treatments, or do they receive no treatment like the rest of the ME population?
a single normal dose of folic acid prescribed by a neurologist triggered an intense 15-minute bout of vertigo, after which the numbness was gone.
Generally, they are told the treatment would be worse than the disease.
Mildly elevated homocysteine being my only abnormal lab resultWow, what a wild story. Do you know what led the neuro to prescribe folic acid?
I have no idea. However if you look at MS forums you will see they use many of the same things we do. What they have that we don't are approved drugs. They also respond better to exercise.The folks in the in-between group, do they respond to MS treatments, or do they receive no treatment like the rest of the ME population?