Kkb1216 Posted February 13, 2015 Report Share Posted February 13, 2015 Hi, New around here, but have enjoyed browsing for info. After 8 months of testing, a hospital stay, and several instances of passing out, I finally have a test result. I had an abnormal TTT with the testing doctors leaning towards Neurally Mediated Synoscope. What a mouthful. I see my neurologist Tuesday. I'm trying to come up with intelligent questions to ask. It's the first time we've seen anything other than inappropriate sinus tachycardia on a test result. I'm googling, but to be honest, this isn't a popular diagnosis. What kinds of things do I ask? What have you guys talked over with your doctor and found the most helpful? Appreciate any thoughts. -K Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 13, 2015 Report Share Posted February 13, 2015 Hi,Welcome to the forum! It wasn't clear from your post, so the first thing I thought of is to ask the doc to review the test with you and explain exactly what abnormalities they saw on the test. Was it bp, heart rate, etc.? Quote Link to comment Share on other sites More sharing options...
statesof Posted February 13, 2015 Report Share Posted February 13, 2015 I would just make sure they explain to you what your diagnosis means, and go over any possible treatments that may be helpful. Just make sure that any concerns you have are being addressed even if the doctor seems like they only have so much time on their hands. Quote Link to comment Share on other sites More sharing options...
Kkb1216 Posted February 14, 2015 Author Report Share Posted February 14, 2015 Thanks for the replies. I don't really understand the diagnosis, and the test results are a rather cryptic read. I do need to slow down and remember to build a solid foundation of understanding about what is going wrong. I'm making a list with my husband of both our questions and concerns. I totally thought the tilt table test was going to be a huge waste of time. Goes to show how much I know! I just don't want to miss asking an obvious question. -K Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 14, 2015 Report Share Posted February 14, 2015 Hi K -One thing I've learned regarding this process is to write down any questions that pop into my head right away. Since dysautonomia can often affect cognitive function (and it definitely affects my short term memory), if I don't write it immediately, I often lose it. Maybe you can memo it in your smartphone if that's an option for you. I've also learned that being prepared is really important. My docs like it when I type my questions and give them a copy to look at as we go through them. Also, it's Murphys Law that half way home from the doctor's appointment, you will think of more questions. Don't fret when this happens, you can start a new list and ask these next time. Quote Link to comment Share on other sites More sharing options...
Poncha Posted February 14, 2015 Report Share Posted February 14, 2015 I'm new to this forum too, but these suggestions might also help you. Make sure your doctor explains your condition to you and how it may affect your life. If your doc puts you on medication, make sure you understand what it is and why you're being prescribed that particular medication. Also ask about any side effects you should be aware of and ask whether it's okay to take over the counter meds such as Tylenol or cold medicine with your prescriptions. Also ask whether you should be taking any vitamins or supplements and make sure you understand why they want you to take them. Lastly, keeping a notebook of your questions and notes will help you remember what you want to ask your doctor at your visits. I also print off articles from the internet that I want to talk to my doctor about and put those in my notebook too. Good luck. Quote Link to comment Share on other sites More sharing options...
Dyspatient Posted February 14, 2015 Report Share Posted February 14, 2015 One thing I never ask but should is whether they recommend any restrictions or modifications on activities. I tend to assume (I think, rightly) that it's my job to decide what I'll do and how I'll do it around my illness, however, I am realizing now that I'm applying for disability that I should have been getting documentation of doctors' advice on limitations. Like "don't drive when you feel symptomatic" or "avoid standing for more than 10 minutes" or "you should try to work in an area where you can control the temperature". These are all issues that came up at work and that I had to fight, hard, for accommodations over (ultimately they failed, hence the disability process for me). So I haven't been asking this, but I'm resolved to start asking now.With some syncope, I have noticed some of my doctors have had a tendency to not look at it in terms of a big picture. I used to pass out a lot, and no one ever said "hm, I wonder if something's wrong with that girl's autonomic nervous system..." They just chalked it up to "probably vasovagal syncope", like this happens to normal, otherwise healthy people all the time, and were done with it. Now that I'm older and have a host of (new) autonomic symptoms, I am trying to work more with my doctors to get them to consider symptoms or descriptive diagnoses in the broader context, so I'm asking things like "is it possible this is related to my other autonomic problems?" rather than having them just chalk it up as idiopathic whatever (polyuria, gastroparesis, hypohidrosis). I don't yet have this down smooth, but I know it involves asking questions to prompt them to think in a broader, more interconnected context, and I mention it because having had some experience with my syncope being written off, I hope that you can find ways to help your doctor think holistically rather than single symptom-based. Quote Link to comment Share on other sites More sharing options...
Kkb1216 Posted February 15, 2015 Author Report Share Posted February 15, 2015 Thanks guys!I am definitely going to write things down. I like the idea of keeping a notebook. I could slip it in the binder I am putting together with all my Dr. Visits and test results. None of these doctors seem to talk to each other, or have everything they need to look at. I'm learning to carry it all with me.I get apprehensive asking about limitations. I need to get over that. I have limitations, and I guess I am at the part in the process where I am still trying to deny this is going to be a lifetime change instead of a limited time of sickness. I'll need to work on that quite a bit. It would probably help my husband to hear things out loud. He would have me in bed and never leaving it again if he got his way. The falling and fainting has driven him nuts. He might wrap me in bubble wrap or something of the like. LOLI completely agree on the whole body approach over one symptom at a time. If these doctors had been talking to each other all along, we might have circumvented several months of waste and frustration. I can't say they are doing anything wrong really. It's how they are trained. But geez.This a learning process and I appreciate everyone giving me their tips and tricks!-K Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted February 28, 2015 Report Share Posted February 28, 2015 Hi K,I apologize in advance if I've missed it, but was just hoping that you got the chance to ask all of your questions at your doctor's visit and that you had a successful appointment. Fingers crossed!Sarah Quote Link to comment Share on other sites More sharing options...
Kkb1216 Posted March 2, 2015 Author Report Share Posted March 2, 2015 Hi Sarah, Thanks for checking back in! I did get to ask all my questions. My neurologist admitted he had never treated anyone like me. He would like me to see someone else, a specialist. We called the one guy we found out about in our area, but we can't get in until summer. I cried a bunch, but am getting on with it now. The cardiologist and the neurologist approved some medication changes. I also have prescription for Ted stockings, although I Googled them. I just don't know. I haven't had the guts to find a place that does them yet. I need to put that on my list of things to get over. It's the thought of waiting so long to speak to a doctor that has seen this before that broke me a little. Other doctors just keep adding more meds because they don't really know, but they've got to do something. Healthy to pill popper seems so very extreme when I am not experiencing relief. Anyways, moving forward even if it's at a snails pace! -K Quote Link to comment Share on other sites More sharing options...
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