Confused and Frustrated About What Is Going

Good morning, Susan Ellen (@SusanEllen66)

I hope you'll not be offended when I say your story sounds all too familiar, not the specifics of your situation but the journey you're on to learn the true nature of what you've got. So many of us bounce from one doctor's office to another, from one kind of specialist to another kind, all in search of a diagnosis that makes sense. I tell people now that I have idiopathic sensory-motor peripheral neuropathy. But is that what I have? I mean, is that it exactly? I'm reasonably sure it is, at least for the moment. I'm happy to proceed with my neurologist's therapy suggestions as if that is my diagnosis without an iota of doubt. Like you––like so many of us here––I am forever doing my own research. I fear my journey isn't over. It's the nature of this disease––or of this pantheon of diseases––that we'll spend much of our lives searching for that "true" diagnosis.

I wish you a beautiful day!

Cheers!
Ray (@ray666)

......am in a similar boat, Ray, and whereas once we were criticized for going on "Doctor Google" it is more like an "Internet Search" and has symptoms, medications, case histories, etc. Just wading through the hundreds if not thousands of medical issues makes me wonder how even a "specialist" can know all this information ... and if genes play a part, or lifestyle, occupation, childhood illnesses etc. it just feels to me that the Nurse I see or even a specialist once in a while seem to be helpful in listening to my "story" but don't ask enough questions, if that makes sense. I get home after a long awaited appointment and feel very deflated and mad at myself for not mentioning "this or that" which may help in diagnosis etc., but I still seem to rely on the Dr. being the one in charge and it is he/she who asks or should ask the relevant questions? One reason of course is "time" and they have so many others to see and help.

@ray666 @lacy2 It’s just that I would like to get the treatment/medication I need to keep me going for another 10 years or so.
The fingers on my left hand are quickly becoming disfigured (swan). It’s happening so fast that I am really concerned. I only have use of the thumb and index finger now. That’s happened over the last month.

I’m writing to my doctors on their portal to get some answers and ask for a blood test for Amyloidosis.

Hi Valerie, It can be scary wading through an Internet search for medical conditions or symptoms. Just thought I would pop in to let you know we have a couple of discussions members may find helpful when doing searches.

--- How do you identify trustworthy health information?: https://connect.mayoclinic.org/discussion/how-do-you-identify-trustworthy-health-information/
--- How to Avoid Quacks and Snake Oil Treatments: https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

Valerie - I think part of my Dr. Google “issue” is that since my disability now limits the time on my feet so much, the computer has taken over much of my old aerobic activity, so I try to use the computer for fruitful activities. I found a symptom checker one time… some site where you type in your list of symptoms and it spits out your possible diagnosis. I first jokingly thought how doctors could be using that type of app. Then I started seriously wondering if they use those types of (hopefully much more enhanced) software. With the speed needed in the medical “business” these days, it makes sense to get to 80% of the population’s diagnoses and treatments for the masses. Unfortunately we’re in the 20% of the population that got kicked into the Idiopathic bucket, but I’m hoping the resources eventually get freed to develop the software for the next level drill down of symptoms to keep lowering the Idiopathic number 😄😄

Valerie (@lacy2), Sue Ellen (@SueEllen66),

Only this morning, Valerie, I'm feeling the very feeling you describe. Tomorrow, I've my annual checkup with my PCP. I know she'll begin by asking how I am. In years past, my reply would be a simple one: "Good," or "I have occasional sleepless nights" (something specific). When she asks how I am these days, my inclination is to reply, "How much time have you got?" or "Where shall I begin?" At the same time, I'm fully aware that my PCP has a day-full of patients, and she's on a tight schedule. Besides, she's a PCP, not a specialist.

However, I often have the same Q&A with my specialists: "How are you?" followed by the desire to say, "Where shall I begin?"

For years now, I've had this growing suspicion that I have a "parent" or "Ur" problem over-arching all of my highly localized problems (flat feet, arthritic joints, low red blood cell count, poor balance, unreliable gait, etc.). I had thought that my peripheral neuropathy might be my Ur problem, but now I'm not so sure; now I'm beginning to wonder if my PN is another of my subordinate problems and my Ur or parent problem is yet to be found.

Ray (@ray666)

Ray - you have a kind PCP. Mine now begins my annual exam with “What were the four words the receptionist asked you to remember?” 😀😂🤪

Ray, I make sure my PCP receives copies of any lab work or test results that my other doctors order. I have a PCP, and three specialists - Neurologist, Pain, and Rheumatologist, from the years when my diagnosis was fibromyalgia. I drop off copies at each office as needed. It’s extra work on my part, but the system of electronic result sharing doesn’t always work well. That way my PCP has an idea of what’s going on, and doesn’t order duplicate tests, or can work off other results. Anyway, you get the idea!

Good morning, @julbpat. I've prepared just that way for my annual later day: I made a copy of my hematologist's lab report to leave with my PCP. After another cup of coffee, I'm going to phone my neurologist's office to ask why I've not heard back from him; I sent him a copy of the same report over a week ago to ask if possibly he saw something that might have bearing on my PN. It does take a little extra effort, but I believe it's important: even though all of our medical activity is supposed to be archived digitally and available to all of our doctors, I find it still helps to hand them things like lab reports on paper. ––Ray (@ray666)

The four words the receptionist asked me to remember? Mmm? "Don't steal the pen." Were those the words? 🙂