just when you think......................

 Just when I thought everything was working out my way I hit a roadblock.The steroids went fine...The therapy is over-taxing me it is sooo hard to move but I push myself. Hopefully my muscles and I will adjust.The scooter unbelievable the neuro's office called today.....Said he wanted me to go elsewhere to be evaluated..I told them I am not going elsewhere I was completely satisfied with what I had.....They will see what he wants to do about this.I think my pcp can order the one I want and with the company I want.....I am so frustrated with the neuro I can never get ahold of them...He is the one that told me I should get a scooter now I have to go where they tell me to I dont think so..This was just a roided vent sorry but it is annoying and it doesnt sound like anybody else has problems with their dr.s...I hope the pcp will order it she can see how I am but they for some reason dont want to go over a specialist's head..grrrrrrrrrrr.barb

Thing is Uppity i have an ot working with me.....I put a call into the pcp and they said they will help me..So we will see......I am so so digruntled with the neuro right now....They want one thing they change their minds..I am coming down off a steroid infusion so I am more upset than I normally would be....But then again I am stressful just thinking about everything....I should take a valuim and go to bed......It will work out I am sure I am close to my pcp's office so I can get there no problem...barb

Well your post prompted me to call my neuro. if nothing else realize you helped me to stop letting them do this to me lol..

i told them of how my neuro told me verbally that he was releasing my neurontin prn and he called me baby aww lol.....and that the clinic had said 3800 mg and he has me on 100 before bedtime (when i picked the med up) i told them , please i try to ride out as much as i can at home but....if he waits 2 days to call me i will end up in your ER this time and we will have to address steroids as i cannot do this on 1 lil neurontin as i sleep and my body is twisting..
She became very serious and siad OK what number can he reach you at? he will call u in the next hour! I thouht yeah to avoid dealing with me inpatient...
Ive avoided inpatient to the point of almost feeling like i need hospice lol...and i simply cant do this. Someone has to take some doctorship accountability and put me in and review whats going on and work out my regimen and quiet this episode or im also scooter bound without being happy for it.....
They can be such a great thing, but im saying id have my head laying on it as my legs and arms twist...

Sometimes it feels they would rather you be so proactive (as they told me last week, Kiera your a good patient) well im not above being human and im at my end on this..i need intervention here.

Sure its easier for them to let me do it myself as i put gel in my dry eyes, and try to untwist myself and remain awake from the narcolepsy only to suffer the pain and go thru another cycle of their appts where they get ins money>

So no, not all of our doctors are super hero's to be sure. Mine just got a friendly wake up call that ill be coming to them quickly through the ER as i cannot stand or Bare this right now.


So your post helped me...and realize that none of us Knew all there was to know. Nor do we tame the MS as we line up our PERFECT doctors (there is no such world)

kiera

when you find out please share. As it might help someone later as well to know how that works. I'm sorry for all your going through , try not to let that added stress hurt you more though (i know its hard)

You really did prompt me. They did call and put my neurontin back finally lol..thanks for the proactive reminder.

You are right. I also have been treated more serious with steroid in beginning for smaller things i didnt ask nor want (not often tho) and now when id think id need them most (walking is not looking to going to be normal with this one), and eyes are involved, id really hate to go blind even temporarily but yes your right.

While we are in there they do fall all over, with books, therapist offers and education , advice and compassion but when you get home it does tend to be hey remember me thing ......


your right, always something

kiera