While I was diagnosed as M.S. two decades ago, then not MS, then probable Lupus ..... At this point, my docs have settled on hypercoagulable with an autoimmune component. And for some docs, probable seronegative APS. Thank you Luisa for sharing the HSS annual report yesterday. The parts that really weighed on me from the doctors were these very telling statements:
"How do you diagnose a rheumatic disease when the patient exhibits symptoms that appear to be related to lupus and, yet, they also have symptoms that signify rheumatoid arthritis? This conundrum occurs time and time again in rheumatology practice. It's a challenge for the physicians who have to determine and justify treatments. It's a frustration for the patients in their care who have to live with the uncertainty of their diagnosis. .... Michael D Lockshin, MD, Director of the Barbara Volcker Center for Women and Rheumatic Disease at HSS and the immediate past Editor in Chief of Arthritis & Rheumatism, is one of the nation's preeminent experts in systemic lupus erythmatosus, APS, and other autoimmune diseases. In his nearly four decades of clinical practice, Dr Lockshin has seen more than his share of patients whose symptoms defy standard diagnostic criteria in a field that already encompasses some of the most challenging diseases in medicine."
"Overlapping rheumatic disease is problematic on so many fronts... .... reviewed nearly 3000 patients .... about 25% of these patients do not fit diagnostic guidelines, and they don't fit for several reasons..."
"The most important of these ... is overlapping disease which can present in two ways: one in which patients have evidence of multiple diseases simultaneously, and one in which they have evidence of multiple diseases sequentially. "For example, patients can be in both categories where their diagnosis begins as lupus, and a few years later it looks like they have straight rheumatoid arthritis, and a decade later the diagnosis is back to lupus again."
"Further complicating the clinical picture is overlapping rheumatic diseases is that patients may have co-occurring disorder such as Crohn's disease, multiple sclerosis, or diabetes. "These appear far more frequently than you would anticipate in patients with rheumatic illness and can interfere with what is regarded as best treatment practice."
That brings me to today. I haven't been having significant M.S. symptoms lately. Then recently my foot drop on my right foot is starting to spring up in the last few days. In addition, my phantom symptom of the feeling of having bugs on my skin is flaring up again. Whenever I am in relapse for MS, I have phantom symptoms that my doc says are neuropathic in nature and are related to when the lesions in my brain are brighter on the MRIs. Yet, with no official diagnosis there is no treatment.
I mentioned yesterday to hubby that I feel the foot drop coming back. I haven't mentioned the bugs. I try not to worry or bother him, but I believe in giving a heads-up when a slide may be taking place soon. I also believe at these times in increasing exercise and working out harder (or changing it up) so that neuroplasticity has a chance. That's where you activate a region around the lesion and the brain can by-pass the lesion and all is well. So for example, when I get numbness in fingers, I pass a basketball around my back to activate new brain development in the area of fingers moving in the brain or I try to play a piano tune (hahaha). I believe neuroplasticity helps. I also am more watchful and concerned with what I am eating when I see flare-up twinges.
Back to the bugs. I can't stand that feeling of bugs crawling on my skin. There aren't any real bugs of course. It takes a lot of self control to not go crazy at those times. Other Phantom Symptoms I have had in the past caused by the brain lesions include feeling water pouring down my calves (as if in the shower) and a spot on my back that feels like my skin is literally on fire (I touch it with an ice cube and the pain goes away - shocked into neuroplasticity).
Hopefully, this latest return of early on M.S. symptoms disappears before I am slurring my words and falling on my face again when a leg goes out while walking.
I realize many of you here also go through the changing of relapsing of symptoms over time. I'd like to hear your stories.