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Old 11-12-2017, 01:10 AM
Starznight Starznight is offline
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Join Date: Jun 2014
Location: Georgia
Posts: 970
8 yr Member
Starznight Starznight is offline
Member
 
Join Date: Jun 2014
Location: Georgia
Posts: 970
8 yr Member
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Hello and welcome to the boards. As most have already said, neurological disorders, as well as auto-immune disorders are devilishly tricky to diagnosis, often times even with all the tests. Though I do understand for you it is a bit more daunting given your comfort level in visiting doctors. I wish I could say, well if you document well enough your symptoms, or ask just the 'right' questions, that it will speed up the process, however honestly, it simply won't. And more regrettably still, is it will likely take quite a few doctor appts to diagnosis something like MS or Lupus. It's simply not a one size fits all, and a quickee blood test to confirm that only comes back negative or positive... it's quite a few tests, and oft than not in the case of MS, it's a matter of ruling out everything else.

Now there are a few things, first and foremost is having symptoms that fit, from your list, I'd say there's enough to be suspicious of MS, but then there's enough to support Lupus, and a whole host of other potential health concerns from auto-immune disorders like Lupus, to central nervous system disorders like MS to peripheral nervous system disorders like Fibromyalga.

Depending on what your doctor thinks is the most likely- you may be sent for an MRI (is what I think would be the most likely only because you stated having a few common symptoms to the pseudotumor cerebri) IF, there is anything on the MRI that makes your doctor suspect, but not really able to confirm, then the next step would likely be a lumbar puncture to look for O-bands, and O-bands appearing in number to follow through with the McDonald Criteria. So that's already at least 3 visits, and this is assuming your doctor is fairly certain you may be on the right track in thinking it could be MS.

I'm not trying to concern you, or have you worried about needing to make frequent trips to the doctor, it's just simply not realistic to expect a one and done doctor's appointment for something of this nature.

Lupus is another, like many auto-immune diseases, that isn't a simple pulling a vial of blood and there's your answer... there are many different variants of the disorder and if I remember correctly from a friend of mine getting her diagnosis a few of them don't even show on the blood screens unless it's active, which active symptoms doesn't always mean active disease, she had a bit of a trial and error process with that.

The there's the PNS diseases, like Fibro. Another one that like auto-immune and even to some extent CNS diseases like MS, are troublesome to catch when the disease is 'inactive' but at the same time you can be experiencing all the symptoms, even though the disease is remitting or possibly even dormant. And for many PNS disorders and diseases the doctor will order an EMG, nerve conduction test and may have to repeat the test a few times before coming to a diagnosis.

About the only one and done, sort of, test is for diabetes. Fasting blood sugar rates have rather strict and readily readable numbers to say yeah or nay to, however even then for most people potentially receiving their first diagnosis, many doctors will still recommend an additional timed glucose test. Where they have you drink a reminiscent Tang substance and monitor your glucose levels over a 2 hour (I think it is) period. So even for that, it's a twice and done type deal.

Now that the pretty bad news is out of the way, firstly you are doing well by documenting as many possible symptoms you can think of as well roughly how long they persist and rates of recurrence over time. The better you're able to document things, the easier time the doctor will have in sorting out what may be the culprit rather than putting you through anything unnecessary. And if you can think of anything that may trigger any of the symptoms, every rainy day you get a headache or when it's hot outside your energy is just completely sapped away and you're snoozing by 4 pm after taking a nap at 1.... (exaggerated examples, but along those lines.) Would also assist your doctor in lining up the most probable suspects.

Though, I also wonder if you might have considered some kind of home health care, it may be possible, depending on your doctor and insurance and what's available in your area, to see the doctor in person once, let them do the whole squeeze this hand, lift this leg, follow the finger with your eyes... in the office... a single physical exam... and then do follow-ups over a video chat. And it may even be possible, depending on your anxiety level, to try the video chat first as sort of a consult. Talk with the doctor about your symptoms, about your medical history, and your concerns as to what it may be and the doctor may even be able to arrange for some of the testing to be done in your home by a nurse or visiting radiologist. An MRI would not be possible but they do have mobile CT scans, EMG's, blood draws, EKG's and even sleep studies, etc... that your doctor maybe able to order even without a physical examination.

And such things as those that may be possible to do without leaving your home, may help in reaching a proper diagnosis without causing too much undue stress to yourself and potentially aggravating an existing condition which may actually make it harder to detect.
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"Thanks for this!" says:
kiwi33 (11-12-2017)