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Old 11-24-2022, 03:23 PM
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agate agate is offline
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agate agate is offline
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Join Date: Aug 2006
Location: Wild West
Posts: 1,009
15 yr Member
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You've been to quite a number of doctors but your efforts to get an answer haven't succeeded. Maybe you're not giving the doctors the information needed for them to figure out what is going on.

That's why taking a break from seeing doctors for a while and just keeping a careful record of what your symptoms are and when they happen and how severe they are would be useful. If you do this for a while and look over your record, you might see patterns that you hadn't noticed. And then you might have a clue about what triggers some of the symptoms--and you could modify your behavior so as to prevent them.

I do this with MS problems and have the impression that people with other neurological disorders do that as well.

Yes, many neurological disorders do benefit from being caught early because the treatments that are available work best if started at disease onset. But you've already had these problems for 10 years and haven't been lucky enough to get treated for a specific disorder. Maybe it's time to try something different, like giving the doctors a pass for now and just concentrating on figuring out for yourself what is happening and when. Then the next time you visit a doctor, you can go with a clearer picture to present. All the doctor has is what you tell him/her and what he/she observes, and there may not be much observing during the 20 minutes or so when you're being seen.

You don't want to get too long-winded about it, of course. You want to be able to sum up the picture in as few words as possible, but you can do that once you've kept that record and looked it over, but it will take time. Give yourself at least a few months.

Also, since doctors have a way of not looking at a patient's history, you should go in there with a record of any significant results from tests you've already have. If you have a copy of the actual test results or MRI films or whatever, bring them too. The doctor should be aware of how long you've been trying and what has already been done even though a lot of doctors want to start fresh without paying any attention to your history. You should try not to let that happen. Your history is relevant.

And many doctors who are aware of your 10-year history of attempts at finding out will be apt to dismiss you as "doctor-shopping" or one of the "worried well." That's why you should be prepared to present your case clearly but succinctly, and by all means unemotionally. You and the doctor are a scientific team who are trying to solve a problem together. You want to try to be as objective as you can about your symptoms.

Be your own doctor for a while. Observe and make notes. Keep the notes in the form of a record over time. Have a piece of paper or a place in your computer and whenever you have stiffness or whatever, jot down the day, the time of day, the severity of the symptom and any other useful details about it, and what you were doing at the time. If you're affected by temperature and it was too hot or too cold at the time, mention that. If lack of sleep makes things worse for you and you had a bad night, mention that. After a few months you should have enough of a record for you to get a picture of what is going on and when the bad things are apt to happen.

Neurologists are interested in some odd things. Even whether or not you swing your arms while you walk means something to them. But you have to do the observing so you can make them aware of situations that they might not be seeing there in the office in that short time.
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MS diagnosed 1980. Type 2 diabetes, osteoarthritis.
Avonex 2002-2005. Copaxone 6/4/07-5/15/10. Currently: Glatopa (generic Copaxone), 40mg 3 times/week, since 12/16/20
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