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Newly Diagnosed--What Should I Ask The Doctor?


SaraC628

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Hi, I am very newly diagnosed after about 10 months of doctors telling me maybe my issues were stress related. I actually have not seen my neurologist yet, but I was able to get a copy of the report from Froedtert where I had my testing done.

According to my report I have orthostatic intolerance and mild sympathetic insufficiency. The report states to consider anti-orthostatic measures (salt, fluids, Florinef). Also states to consider repeat testing in one year.

I am going to see my local neurologist on Sept. 4th in Appleton and I am wondering what types of things I should be asking her about. I want to make sure I get the information I need. Is anyone out there from Wisconsin? Do you see a local neurologist or cardiologist or do you see a doctor at Froedtert? How often do you have check ups? How long are you typically testing a medication to see if it is effective?

And is OI the same as POTS?

I think that is all for now. Any advise would be greatly appreciated!

Sara

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I'm from WI - had my testing done at Froedert, too. Unfortunately, I have migraines on top of everything else, and I have yet to find a balance for all of my symptoms. That said, I was thrown back to my migraine neuro from Froedert, so we're trying to find a way to manage things at the moment. It all depends on the Dr you see at Froedert and if they are/can help you. It sounds like your diagnosis differs from mine.

Ideally, if you can find someone local to you who understands the diagnosis and how to work with it, that would probably work best. The appointment times can take a while to get in at Froedert. For me, generally testing medications for a month. That's about how long it takes before side effects crash things, or what have you. You may be different, it all depends. Have you had the massive blood testing yet? I had tests done, some were sent out to Mayo for things like auto-antibodies. If you haven't, this may be useful to narrow down and make sure there isn't something else underlying causing your trouble.

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How often do you have check ups? How long are you typically testing a medication to see if it is effective?

And is OI the same as POTS?

I think that is all for now. Any advise would be greatly appreciated!

Sara

Hi Sara! Welcome :D

I know I'm late on this - How was you appointment?? - but here are a few answers.

POTS is a type of OI. Did you get the full report of what your bp/hr was throughout the test, or just the doc's summary? Having the exact numbers would definitely be helpful in figuring out what might be going on.

When I was first diagnosed, I had every 2 weeks/monthly appointments while I was trying out meds. Once we figured out what worked for me, we bumped it up to 3 months, and now I'm at once every 6 months.

As for how long I tested a med, it really depended on what med it was. With florinef, I was on a dose that did nothing but make me feel fat for about 2 weeks, then we increased the dosage and suddenly I felt fat and like my head was going to explode. :lol: So I stopped that med after about 2 weeks and 4 days. With midodrine, I knew immediately it was for me. Within a half hour of taking the first dose. We increased the dose after two weeks, same as with florinef, increased it again after 2 more weeks just to see, then decreased it back down after a few days.

With the beta blockers, I stayed on propranolol for a week, maybe less. It made me feel so lethargic. I couldn't handle it. But this was my primary, not my POTS doc.

A lot of POTSies seem to have a very low tolerance for meds (not me :lol: ), so docs familiar with us may want to start their patients out with very low doses. You may want to talk this over with your doc, if you know this does/does not generally apply to you - like I said, I don't have a low tolerance. If anything, it's high. Start me out at a POTS dose/increase regime, and it's going to take years for me to feel anything - and my doc, thankfully, considered that when she prescribed the drugs. It depends on the person.

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