Hi everyone, 1 Dec I went to the Neuro-Immunologist and I'm quite frustrated beyond words...
First of all the Prof Children Neuro I went to weeks ago, remembering he said that Neurolupus could be case and it is hard to diagnosis but my symptoms itself seems to be representing it.But then this doctor...first it was ok.Apparently she's one that educates herself well, reads a lot etc.
She was saying how Lupus is a strange disease and if it's indeed a case of CNS Lupus that it has to be treated agressive but the meds used for that can cause a lot of effects and so on.
She asked about my main comlpaints(read all my history before to come in the office, said it's a complicated story and so on as I knew)and she was first listening but then I mentioned how I can't sometimes sleep well and sleep better in the day(also the Pred can cause it obviously!!As I got upped to 10 again)and then...it started.
She KEPT dragging on about that a good night rest can do a lot and concentration based also.My eye issues suddenly could became related to the muscles also of not 'sleeping well'.NO just NO, that's not the case...but anywho she didn't even look at my eyes or listen well after she made her opinion clear: It's important to sleep well, else you get in a vicious circle bla bla, excercise is important bla bla.Well I explained so many times that one of my main and beginning symptoms was: Fatigue.It does not make a difference if I sleep early or more or anything, I just have chronic fatigue and pain.But no she won't listen.So she gave me a basic sleeping hormone based thing to help me sleep.
Despite me explaining that I most of the time can sleep well and don't stay up untill 6, just right now I can't sleep well again.Then she examined also before the sleeping whining started but didn't even try and prevent me from falling when I did the usual tests that fail: stand with feet and eye closed, walk toe to heel on one line, and so on.She didn't give any feedback or anything.Just saying that she wanted to try the sleeping pill kind of thing, change one of my meds to just Paracetamol(not with tramadol added to that one, the one I took was a mix of both) and then the basic tramadol also with that.And then the Gabapentine that helped me for headaches and tension in the neck, but didn't help me for the tingling and so on or burning, I told her but she said it's better to stop it then and changed it to some other kind of med of the same use.Either an antidepressant kind or anything anti-epileptic med..
Point is, she still didn't just give me an answer while they all claim 'it's got to be taken serious etc(as the Prof said before)
Then now it's as if daily excercise, good night rest and all that crap will solve it or ease it?I tried all of that before and if it worked then I wouldn't have been there complaining that my symptoms just keep worsening..
I'm getting a bit tired of this but I'll see what my Rheumatologist's opinion is and I will anyway try and do what the people 'who know everything best' said.And it's their resonsibility really if things just progress and they're just wasting more time. :-\
She prescribed Redomex amitriptyline as the anti-depressant I should try.I'll post more about that later as the thread is already long enough.
Oh, (((Shani))) I am so sorry that you still have no answers. If you have Dry eye, dry mouth or swollen glands I as that you check out the tones. There are tones for insomnia and lupus also. Simple thing like the mumps scarf and my meditation can help and have helped others. I wish I could do more for so many on this forum.
Hiya Shani!
That's pretty annoying. So she gave you a lecture. It's something compulsive with so many docs, they just have to take the approach that you're not doing enough to help yourself. I'm sure you didn't know before this conversation that you needed sleep. :D
All the annoying stuff aside, is she doing or will she do what needs to be done medically for you? It might be worth it to put up with a few tactless speeches if she provides you with the right care. We have to put on a tough skin when we visit these types, don't we? :P
Shani,
I'm sorry you had to pay your hard earned money to be lectured on the benefits of sleep. Most of us (here) could have given that same speech for free. Sometimes certain doctors act as though you are a child and I detest that. My first rheumy told me I need a psychiatrist and a pain clinic - the second said all I needed was exercise and go back to work. She also said that Fibromyalgia was not an illness . . . it was just a wasted paper diagnosis for people that needed to exercise. Fortunately for me, my Internist told me to NOT listen to either of them. He had treated me for years and knew I was sick. Fast forward 7 years and I finally have a knowedgeable Rheumy and a confirmed diagnosis of Sjogrens. Nonetheless, the first medicine Evoxac cause a allergic reaction and I ended up in the ER for 3 hrs. last night.
Anyway, back to the sleep issue . . . I've learned not to mention that symptom until I been to the doc a few times. It seems that once you do, they want to lump all the symptoms into a little basket called "lack of sleep". Duh! They fail to realize/consider that we slept fine until we had the other issues. Good luck and don't give up!!! WE are strong people who have usually weathered years of symptoms that would have sent a lot of folks to the nut house. However, we are still here - fighting this battle one day at a time and supporting one another.
Blessings my new friend.
Shani,
I am so sorry, I know how frustrated you must be. I wish I could help you.
I'll send you Hugs and prayers,
Harlin
Ohhhh Shani,
A 'lecture' is so unpleasant. Like we're really stupid.
sigh
I think it is the easy way out, personally, for the doctor. They just get tired of 'thinking hard'.
Hang in there.
Hugs
Elaine