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

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pokey79
Regular Member


Date Joined Aug 2007
Total Posts : 144
   Posted 3/20/2008 11:13 AM (GMT -6)   
sad  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 mad
diaganosed 1983
avonex once weekly
steroid infusion every three months for three days
mycoline three times a day
fosamax once a week
bladder meds. daily
calcium/multivitiams
synthyroid
 
 


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 3/20/2008 5:09 PM (GMT -6)   
What kind of further evaluation did the neuro want you to do?  Sometimes they'll want patients to undergo neuropsychological evaluation, for example, or occupational therapy -- both good ideas to get help for issues you might not realize you even have.  I hope you get this worked out.

...I am not a doctor, nor health professional, and don't pretend to be one, here.....


pokey79
Regular Member


Date Joined Aug 2007
Total Posts : 144
   Posted 3/20/2008 8:54 PM (GMT -6)   
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
diaganosed 1983
avonex once weekly
steroid infusion every three months for three days
mycoline three times a day
fosamax once a week
bladder meds. daily
calcium/multivitiams
synthyroid
 
 


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 3/24/2008 6:22 AM (GMT -6)   
Barb,

Hon i do have tons of probs with doctors. Although ive rallied alot of mine down to a minimum and stopped listening to jerks...

My neuro quite frankly recieved the news of my kidneys being good, understood it was from bowel blockage and said he wasnt even going to bother that other doctor now and he was releasing my neurontin to me..i go to pick it up and guess what?

Where theyd been scared he'd limited it to 1 300 before bed, now he's UPPED me to 1 / 100 before bed? After the hospital or clinic i went to faxed him a reminder that they feel i need 3800 mgs of neurontin????????????

Gasp........why? whY. cant the docs remember us? Becuz they are human too but when we are "suffering" its not alot of solace..so here i go again today..hurting like crap (neurontin in my closet) but have to call to REJUGGLE his mind...

He has a good heart and i dont think he intentionally brain farted this but nevertheless it is what it is.....more stress!

So please never ever think our doctors dont short us..ok?

And im glad you spoke up and told them your not going elsewhere lol. Sometimes you have to Self Protect, especially with this diease as they can poke on us and learn from us and will shoot us out and recycle us over and over and wish to repeat tests already done...

Remain proactive and remember its your body (im hurting so bad from listening to spinal doc on friday ) so i learn as i get hurt lol.

kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 3/24/2008 6:34 AM (GMT -6)   
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
Every day brings us closer to what we reach for .........in all things.
 
Kiera


pokey79
Regular Member


Date Joined Aug 2007
Total Posts : 144
   Posted 3/24/2008 1:51 PM (GMT -6)   
Good that i got you going with my post..No our dr's are not perfect i understand that........But they fall all over us when we are there then when we need something afterwards it is impossible to get what you need...Oh an by the way i think (key word) my pcp sent a script for my scooter i will know for sure tomorrow...always something....barb
diaganosed 1983
avonex once weekly
steroid infusion every three months for three days
mycoline three times a day
fosamax once a week
bladder meds. daily
calcium/multivitiams
synthyroid
 
 


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 3/25/2008 9:44 PM (GMT -6)   
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
Every day brings us closer to what we reach for .........in all things.
 
Kiera


pokey79
Regular Member


Date Joined Aug 2007
Total Posts : 144
   Posted 3/26/2008 5:46 AM (GMT -6)   
Well as of yesterday my pcp pulled through for me....Havent heard back but I think all went well.....Which kinda makes me think why do I go into the city to be ignored when there are neuro's here not as prpminent but none the less....I keep telling myself the best isnt always the best fit....But everybody from my support group travels in to see "the best" so I go by their advice too.And I guess the only thing I can do is let him know how his staff operates....If he tells me thats how they do things there then I will have my answer.Just gets me worked up they order stuff for you to make your life easier then you cant get near them....So I most likely will stay where I am at unless he tells me...........................barb
diaganosed 1983
avonex once weekly
steroid infusion every three months for three days
mycoline three times a day
fosamax once a week
bladder meds. daily
calcium/multivitiams
synthyroid
 
 

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