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my 6th visit to the neurologist - aggravated


#41

Hehe … at one point I scored all my symptoms using a great app and inputted everything I did and ate.

I showed this to a consultant and his reaction was “you are a bit obsessed with this aren’t you?”

erm … yeah! wouldn’t you be if you perceived it to be destroying your life as you once knew it?!


#42

God, I feel you, Dave. You just articulated all the thoughts sitting in the pit of my stomach.


#43

Yes I still use a nice app but stopped tracking so many things. Still a good idea for someone trying to determine if some medicine or therapy is helping. It made a nice graph showing my head pressure and unsteadiness for instance becoming constantly worse as I ramped up some meds. A big issue with longer term impressions of how you are doing is that it’s really hard to remember symptoms.

I remember back in the day when me and my engineer friends were all “audiophiles” and we talked about how hard it was to trial different speakers unless you could have them in the same room with an a/b switch. Called it auditory memory describing how hard it was to determine differences in sound when time was long between tests. It’s the same with symptoms so I think it’s helpful to have some app and scales of badness or goodness that you can reference to get a better idea if you are better or worse. The app I use is called MySymptoms and it let’s you define your own set of symptoms to track and also let’s you track food and meds and exercise.

But yes the doctors could care less. It’s all benign so your not going to die - just deal with it. How could you get so obsessed with this silly thing that Is ruining your life. Just trust the docs blindly - they are all so much smarter than you and you are just messing with them with all those silly questions.


#44

Maybe I’m insanely lucky or just stubborn, or both, but I kept going until I found someone who’d listen to me. I found a young, new neurological nurse with an open mind and a tough time kicking patients to the curb. I do more research than she does, copy her on it and tell her what I want to try next. Then I make a follow up and keep going.


#45

You’ve hit on something there. That’s why we aren’t getting cured.

Swindlers and Charletons, Harley Street.

At least the one that dumped me was honest and despite being out in the sticks he didn’t have a wisp of straw in his hair. Not a single one!

He was honest. He did say much as it grieved him not to take any more of my money he knew he could do nothing further to help me …did give me list of neurologists for second opinion but said much the same amount them.


#46

I’m sorry you all have had such bad experiences. I get it. I’ve been permanently damaged by an ENT and am on my third neurologist. But, I have to act as counterpoint and say my medical team is just that, my team. It’s a miracle, I know, but they talk to each other, share notes and contact me via email to see how I’m doing. They really care about me. It is possible in this corrupt capitalist system to find true care givers, but you must advocate for yourself and be persistent. And, apparently, be really lucky. I wish you luck.


#47

Hi… I hope you don’t mind me asking what symptoms the Effexor has helped with specifically? I get this preset much constant woozy, brain lagging sensation… like my brain can’t keep up with my head Movements. Did you have anything similar and if so has the Effexor helped that?


#48

Effexor has helped with that plus reduces general dizziness, headache, neuropathy, head pressure and the many visual symptoms I have.