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"I think Cricket might be in that first group. She has sx, has had a lot of tests and all she wants is just to have a dx so she can get the respect from the medical world that goes along with it."
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Thanks Doydie. Respect and support. I do get that from my MS neuro but definitely not from my PCP. During my last major 'episode' he said it wasn't possible to walk into his office one day and not the next. Well, I must be the queen of hypochondriacs because it is possible, it has happened before and it will probably happen again. I see my MS neuro once a year. Meanwhile my signs and symptoms have progressed to the point where leaving the house is a major challenge. I told my sister the next time I have a major setback she is to put me on a bus and ship me to Ottawa. I'll figure it out when I get there. It's hard when your neuro is 5 hours away and in the winter it might as well be on the other side of the country. Northern travel is a challenge.
See below - those black things on the highway are bears - it's a northern Ontario street gang.
Michael fits what I think must be one of the worst possible scenarios though. To be dx'd with MS and then undiagnosed must be horrible. I can't imagine how frustrating, confusing and scary that would be. Having a rare disease as a final dx can't be pleasant either. It took him all those years to get to the point where he at least knew what was happening.
Medicine is not an exact science. Having a quality of life is important and for many of us is that too much to expect? My MS neuro is the one physician who 'gets' that. Forum support is part of how I cope during the rough spots.