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Tarina

First Neurologist Appointment Post Stroke-Any advice?

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So I was referred to the teaching hospital for a neurologist (December 12.)  This will be the first one I have seen since I left the hospital.  In you guys experience...what is the most important things to communicate to him/her?  I have started to make a list of symptoms/deficits starting at my head and working my way down (so I can keep track and not get sidetracked).  I have questions about my diet, I am on a Keto diet, and the use of hemp oil (CBD with no THC, which btw helps me SOOO much), and which vitamins are important for neuro-regeneration (other than that, I only take aspirin).  What would you tell them, or ask them, if you had to do it all over again?

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Honestly..............................nothing 

I take it as i'm on a ride and hoping it ends soon 

Ed

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If I didn't already know, I'd want to know where in my brain did I have the stroke, and what are my deficits likely to be? Keep in mind, though, that every stroke is different, and you are NOT going to have every deficit he mentions.

Next, I'd pick the top 3-4 things that were bothering me, and ask for suggestions in coping with them.

 

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Also be aware that not all neurologists care about fixing your deficits. many are just interested in the physical brain stuff. Here in Australia you need to see a rehabilitation specialist once the neurologist clears you as unlikely to have another event and/or physically healed.  The rehab specialist will prescribe therapy and things like botox or surgery if you have ongoing muscle issues that need intervention.

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Be aware you may get a neuro who does not seem enthused. He is probably trying to both for a diagnosis and figure out if you are there for secondary reasons. I asked one of the neuros nurses why he had been so much friendlier the last couple visits. It was because I was one of a few patients interested in getting to my best possible state. Most are looking for secondary gain. If you go in realizing that they can't fix everything but can help quite a lot with coping issues since most also have a second degree in psych.

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I can only add to be brutally honest...no sugar coating. I have found Neurologist to be very black and white no gray area. I am sending you good hopes for good bedside manner. 😁 At least in my experience joking goes right over their heads...very intelligent, analytical, literal. Make a list of the most important questions for you and take with you. Area of brain, type of stroke, probable deficits in the area, did you have an MRI? If not, will they order one. What therapies are recommended. Do you know the reason for your stroke? Prevention measures for re-occurrence. There's lots of directions you can go depending on what you already know. Good luck!

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Thank you for all the good advice. I know being nervous about it isn't going to help me communicate well, so I definitely will make up some note cards for questions to ask.  Is it inappropriate to record the appointment on my phone so I can remember what was said?  I'm not sure if I should even ask...medical professionals and their worry about lawyers...blah...blah..blah? 

I only know that the stroke was in my brain stem from chiropractic in my neck, but I don't know what part of the brain stem. I did have an MRI in the hospital, right away, like 12 hours post stroke, but I don't know what it showed, if anything. And there have been (and continue to be) many deficits that I am finding now that I am home and trying to do simple tasks that used to be easy.

Is anyone else super sensitive to the lights in stores and doctors offices, especially florescent lights?  They seem to shut my brain off within 5 seconds, and I can barely move or talk.  The same goes with music on intercoms and crowded places where there is lots of movement.  Is this just me?

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It is not just you Tarina, many of us suffer with over stimulation problems. My worst is sound, all sounds blend into one but lots of movement around me can cause vertigo. Bright colors, etc. there are many forms it can take but over time you can find some coping mechanisms. Just ask and we will try to share.

 

The neuro should have a copy of the MRI and be able to discuss it and what it means for you at least in general terms.

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My advice when seeing a neurologist...

Don't let the buggers get you down.

 

As Tracy and others have said, they are there for factual reasons only.

 

Whatever is said, is not 100% out of concern. 

 

All the best for your appointment. 

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