Chips, to long...
Hello all, never posted something, just commeted, until now. Last week had my six-monthly mri and today the results and checkup appointment with my neuro. Nothing significant on it. As expected. No new activity means no going back to ocrevus. So far we understood eachother.
What bothers me, is that they always ask the same:"anything new? How do you feel? Work ok?" And i just don't know what to say anymore. This time choose something different; " well, i can tell you "so&so, or oh just fine". And then you say;" really? And i say:" well you know, no new symptoms, just a lot of the old stuff playing up." And then you say:" i'm sorry, but there's nothing we can do about that."
....
Argh! I KNOW there's nothing to be done! But you lot always tell me to keep track on the complaints i have, when they occur, for how long etc. "Don't hesitate to give us a call". But I don't know why, because èverytime i answer yoúr question, you lean back a little, or even worse, fold your hands on your desk, hang your head a little and tell me in that doctor-knows-it-all tone that you would like to help me, but..... But yeah, keep giving us a call.
I know all this. I'm not stupid! Stop making me feel i'm angling for some kind of sollution, pitty, or confirmation that i'm realy sick. He always does this. I think he just doesn't get me, that i àm afraid of how rappidly i have to give things up. That i want him to know what kind of person i was, before all this. That I loved swimming, football. Forgodsake, climbing upon nucleair powerplans or being away on a ship 2months a year. And that i was a good teacher and when i spoke, it always sounded coherent and fluent. I want to shout all this in his face. And more.
It doesn't help either that he forgets a lot. That my right eye had a new neuritis. Not left. That i never had any problems with swallowing and speech until this april.
In the end i did managed to convince him of the severity of some old symptoms. If you never examine me anymore, or do the check ups, you don't really know, do you?
I told him that the neuropathy in legs&feet are so bad, i can't sleep and after almost every workday my boyfriend has to take off my shoes & coat. Etc,etc, tip of the f*ing iceberg. So, after 50 minutes(!) I stood outside with my status changed from rrms to sp. And a referral to a psychologist to help me with "some acceptance issues." I could go on& on.. but don't worry, i won't. Is this a common thing people deal with? Are they all the same? More or less?
Ending now. Empty
Your experience sounds familiar. No one can cure MS, but symptoms can be managed. It is up to our healthcare providers to treat us. I am saddened to hear that your concerns are not being addressed. Can you ask for a second opinion? Not sure how the healthcare system works for you, but I think your concerns should be addressed. All the best.
@Juliapinkie1 May I suggest you check out Dr Aaron Boster. He is an American neurologist and posts videos on YouTube about MS. He has several videos covering your subject, take a look at this one: https://www.youtube.com/watch?v=qA7wDSpFHA8