New Health Page for Limbo Landers with Differential Diagnosis?
Given that so many of us are in Limbo Land and some end up with differential diagnoses, I'm wondering if it would be helpful to have a Health Page dedicated to this subject where members of this forum share the pertinent information that led to a differential diagnosis.
JohnnyMutt just found out that his sx are caused by a Vitamin D deficiency. After 8 years and 4 neuros, my preliminary dx is degenerative disc disease with ischemic brain lesions caused by a hereditary clotting disorder, erratic blood pressure and being a smoker.
The page might include the age at which sx started, length of time and # of doctors before dx, list of sx anf their progression, tests ordered (in chronlogical order) and some brief follow up to see how treatment is working with the dx.
This might be helpful to others in terms of relating their sx, asking more questions of their MDs and requesting certain tests, depending upon how well they match the sx and tests that have or have not been run.
I love this idea. My prelim diag is narcolepsy (because of the fatigue and terrible night sleep), Vit D deficiency, chronic microvascular disease (no risk factors apply) and unexplained muscle wasting and pain. I have to think these are a suspicious lot of ailments to suddenly get at the same time. My experience is that as I complain about each symptom I get one more diagnosis, but to me MS makes the most sense and covers all of the symptoms, even if they haven't seen MS lesions. I'd be eager to hear of the experiences, symptoms and end diagnosis from others as well. Thanks
A collective testimonial on differential diagnoses? Just thinking out loud on titles here...
Keep the brainstorm going, and in the meantime I'll look for some past discussions on differential diagnosis - that way we can capture our current, and then hit up our long time members to be a part of it as well.
In another thread, twist330 shared her differential diagnosis of CRPS. At one point, she asked, "I wondered whether there is anyone that has been mis diagonosed with RDS before MS?"
I thought this could be a good addition to this thread.
twist330, I have a friend who was misdiagnosed with various diagnoses, until she was finally diagnosed with RDS (CRPS). Sort of the reverse of your question. She feels confident that CRPS (which she calls "craps" with good humor) is the correct diagnosis in her situation.
But if you're not reasonably confident in your diagnosis, then (IMHO) it's a good idea to present your doubts -- along with your reasoning behind the doubts -- to your doctor. Here's some extensive, indepth information on diagnosing CRPS.
Then see his reaction. If he feels you have made some good points, then ask him to consider ordering additional tests that can help support the CRPS diagnosis.
For example, in the case of CRPS, a bone scan could objectively show increased circulation to the affected joints. Thermography could also objectively show a disturbance. X-rays could show a loss of minerals in later stages of the disease. MRI could show tissue changes in the affected areas.
If those tests come back negative or inconclusive, then you could reasonably ask your doctor to consider additional tests to rule out MS (such as a brain, cervical spinal, and thoracic spinal MRI).
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