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Member
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Join Date: May 2009
Location: CT and NY
Posts: 126
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Member
Join Date: May 2009
Location: CT and NY
Posts: 126
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merciful days ahead
Good morning Laura. You aak a lot of questions in the middle of the night, girlfriend! Here are my 2 1/2 cents such as they are.
"Anyone have a similar experience in being re-diagnosed?"
Nope. My research MDS reviewed my history/reports, examined me thoroughly, and gently, reassuringly concurred with my primary MDS' dx of PD. I say gently because the formal PD dx--while also delivered most delicately--had nonetheless come as a shock. And reassuringly because i was haunted by my research on MSA given what I then saw as dramatic cognitive sx.
Not for nothin' but, of all my many docs, the 4 docs who did recognize my PD were women. The first was a rheumatologist I had consulted last year to rule out other things the day before I expected the first incompetent neuro to finally grasp my condition. She, the rheumy, looked up from her notes following my exam, and said very pointedly, "Tell me precisely what you want to know TODAY." She didn't need to say another word. That same day my PCP said that it looked like PD to her. The other two are my fabulous MDSs. Also a (female) physical therapist picked up on the cogwheeling movement and encouraged me to "be persistent" searching for the cause of my misery. She clearly knew.
ALL of the other docs over the years (neuros, PCPs, orthopedic surgeons, psysiatrists, chiropractors, pain management docs, others) missed and, interestingly, most all were men (sorry guys). I say this not to be contentious but to suggest that when a young woman presents with undiagnosed PD, men may be less likely to listen thoroughly, less likely pick up on gynecological/sexual sx (or even ask about them), more likely to dismiss PD sx in women as psychogenic, more likely to let different communication styles obscure pertinent facts, and more likely to hold fast to his original mis-dx despite emerging sx, never even considering that he may have been mistaken or to recommend a SPECT scan or a visit with an MDS. Glad to get that off my distracting chest...apologies to all the great male docs I haven't met.
"Were many of you tested for Wilson's Disease?"
YES and my perception is that it is standard.
"Have any of you been asked to move your tongue from side to side as fast as possible in a neurological examination? This was new to me and I've never had it done as a PD test. Anyone know why this test is done?"
I can't recall if I was asked to do this but have a hazy recollection from my reading last winter that it is a measure for corticobasal degeneration.
"How many of your neurologists are open to you using herbal supplements?"
Mine is neither against nor for it...she's a jury's-out-till-the-research-is-confirmed kind of person generally. I think what's important is that she respects your interest and is willing to use her expertise to accommodate that. (Eg...when you tell her you're contemplating adding 5-HTP (serotonin precursor) does she know that it's a bad idea to take it with SSRIs? If she isn't familiar is she receptive to the info you've brought along for her? Is she likely to look it up and call or email her findings? My guess is that most neuros think supplements have little or no effect other than placebo and so aren't too ruffled or inspired.
I don't know anything yet on off-label scripts so I look forward to reading others' replies. And I've heard some interesting reports of Viagra being used off label for women. I'll have to ask my Pfizer neighbor about that one when I rally my courage...any decade now!
Your suspicion that "there are no neurologists who don't fall in line with the current mode of flow chart medicine" is probably not true. There are likely a handful. Half of those are likely brilliant. They're the ones who "market skim" taking no insurance and sporting a high-wealth patient base. The best most of us can hope for is finding a neuro who is willing to listen, stays current in the field, and who recognizes that s/he must truly partner with the patient if she wants to help in any way. One possible solution is to do what I did: add a really smart naturopathic physician to your team (mine had specialized in neurophysiology) and ask him/her to call your MDS. Then keep both updated on one another's recommendations. If neither is your PCP, keep her/him in the loop too. BTW, there is evidence-based naturopathic medicine and it has its own research initiatives...more on that later.
I'd speak to your agonist fears but I am suddenly terribly sleepy. Good thing I'm not driving 6 kids to a soccer game right now...
One last thought. I completely agree that we must have more progress toward improved treatment and toward a cure. That said, for those of us who can only function on the meds, they are a godsend. If they are an addiction they are like insulin to a diabetic...easier to wrap your mind around if it keeps you alive. Any of us who resent the imperfections of current PD meds (and don't we all?) might want to talk with my mom who nursed her YOPD mom in the 1950s pre-levadopa. I say this not to make anyone feel guilty for our valid frustrations but to remind us that life-altering advances have and will continue to happen for us and for future generations. Change is the nature of life.
Have a merciful day,
Rose
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