Communication failure
Hey all,
I have this problem and will try to establish a summary;
Tuesday i see my neuro to have an honest, serious talk about the way he behaves towards me. Only thing, he doesn't know yet and will not have seen this comming. Last week, i had the 6moths checkup with my nurse. With neuro himself is once every year. They always ask the same, "how you've been, anything new, any symptoms you like to talk about", etc. And i get that, sure. But almost everytime they just seem to twist my words, downplay my complaints, second-guess symptoms, pick out details that arn't important &vice-versa. I could go on and on. Final straw was the fact i have neuropathy in both legs from my toes up to 10 cm above my knees. Sandpaper rubbing, hot/cold sensation. Etc. And sometimes no feeling at all and spasms. Due to 2 pretty severe relapses. Talked about it many times, including with 2 previous neuros and its in my file. This time he wanted to make an mri of my lower back, "it could be a stenosis or hernia you know". NOOOO, it can NOT cause this!. I didn't even àsked for a cause. We already know, remember? for about 10 years! I have had this backproblems since i was 15, trust me, totally different feeling! But he chooses to go down that rabbithole never the less. Infuriating and I don't have the energy for this. This is an example on how he works. Im nervous and anxious for this "tète á tète"
Anyone some experience with this matter? I always seem to say the wrong thing, so what to do? How to act? I will stay civilized, but boy... suggestions?
If I'm understanding you correctly, the main problem is that you have problems which you believe are due to MS, and your neurologist consistently downplays them and insists on investigating them in case they are due to something else other than MS? In which case, I think the main issue underlying that is that you feel you are not being heard and I would just simply start with that. Understanding goes both ways and if you can accept that your neurologist's focus will always be diagnosis / investigation / management, then both of you can hopefully temper your expectations of each other. Your MS nurse has more time to listen and to empathise with you so that's hopefully a role they're able to fulfil for you. As someone from a healthcare background however, I'll say I think your neurologist is doing exactly the right thing in looking for other causes for your persistent lower limb sensory symptoms. How would you feel if your symptoms were due to something reversible, and it was missed because a doctor went "oh well that's just MS"?
Thanks for taking time, mellowmedusa, the back-issue though is already been looked at since i was 16. Scans, operation, tens-device. The works. The painful leg issue has already been diagnosed as a left-over" symptom after relapses. Even got amitriptyline & gabapentine prescribed by him. It's more that everytime i know i should contact my team, i think, well, 10 times before i do. I trust them, have always told them as much, thats why this feels like i'm not being taken seriously. Like you said, maybe it's better to address the latter first. Thought to end with that one, but better to get it out of the way