I am SO ANGRY!

[Rena705]

I am feeling REALLY crappy today and this probably won't make sense but...a lot of ice pick pain in my head since last night, equilibrium way off, ptosis really bad.  SO I CALL MY DOCTOR...like you would when you have a regular doctor with the hope that they can help when you are in pain.  Between my neuro and my g.p. they had decided to reduce the amount of anti-seizure meds I am on because they felt I was being overmedicated.  I was told that once these meds started to leave my system, naturally the pain may increase and they would give me a different med to help with the pain.  This was on January 6th.

This morning I go to get my blood tested for the level of Tegretol in my system and the pain in my head is excrutiating because I haven't been able to take my 1st dose of the day.  I promptly pass out when my blood is taken and I have to be revived.  I call my g.p. this afternoon and I get an appointment when I explain what happened.  

What a total waste of time!  The doctor tells me that it wouldn't make sense to give me another drug while they are trying to wean me off of the Neurontin and Tegretol so I will just have to "live through the pain"!  I told her that I still have the percocet that she prescribed for me and she told me that she doesn't want me to take that either because it would just be replacing one drug for another.  

I told her that I would be coming back next week for my appointment because I have other things to talk to her about and she said that her time limits me to ONE subject per visit. She said that she is going to set me up for accupuncture and some other treatment for chronic pain and she is going to send me to a pulmonary specialist.  

What makes me SO ANGRY???  They still have not come up with any answer to my most important question...if this is not caused by an MS relapse, what the HE** IS IT?

That is my vent for the night...jammie time and I will talk to you all tomorrow ok?  Thanks for your support, I really need it right now!

Rena705

[Rena705]

I get the ptosis in my left eye and the ice pick sticking in my right temple...my left eye has not stopped drooping since last February!   I was told by my last neuro that it would only last a couple of months...HA...the bonehead!  

I woke up this morning and came to the conclusion that my g.p. is an idiot and really has no idea what the he** is going on with me!  I am going to spend the day today getting together my information on the McDonald Criteria, DMD's, MRI's, timelines and I am going to throw a copy of it all in her lap next Wednesday and ask her if she CAN help me which I doubt she can!

I am going to also try to speak with someone at the MS Society (again even though they have not helped me at all to date!) and see if I can get a doctor that CAN help me.

The problem I am having is that the MS Society has an MS Neurologist linked to each provincial branch and you will never guess who is linked to MY provincial branch...MY MS NEUROLOGIST!  This is the one that will NOT DEAL with me directly and wants to deal with me only through my g.p.!!!  

Let's face it..I am screwed (pardon the expression)!

Rena

[willowwoman7]

i am so sorry you are going through this. I feel for you.  I have had the eye pain pretty consistently for the past 6 months. When it's really bad, the whole side of my face burns. Sometimes, it is so bad that all I can do is take pain meds and climb into the recliner (if i'm allowed). It even has made me cry.

[Momzilla]

I sure hope you get some relief soon.  You have really been through the ringer with just about everything imaginable.  I'm just curious....where do you get the ptosis?  

We need to get a good bonfire going, girl.  Two days to Friday!  Sounds like a good week for a weenie roast!

Feel better!

Zilla*

[Rena705]

I honestly believe that my g.p. doesn't have a clue as to what she is dealing with here...she just keeps alluding to the letter she got from the neurologist and doesn't seem to be able to say anything that comes out of her own head!

I feel that if the pain gets too excrutiating I can always increase my tegretol again until they figure out that I can't deal with this in the way they have planned right?  The percocet really doesn't help with this type of pain anyway, it just makes me feel stoned and not like myself with ice pick pain in my head!  When I was with the old neuro that is what his nurses did when I had an attack...they would just say "if you have an increase in pain, just increase your tegretol."

I don't really know what my next step should be but I am really at my wit's end and feel like I am at the end of the road with no where to go....

Any ideas???

[young at heart]

WOW,  I AGREE WITH SL  WTF???????

I WOULD HAVE A FIT ALL OVER THIS DR.  ONE SUBJECT PER VISIT.

SHE SHOULD HAVE ADDRESSED YOUR PAIN LEVEL WHILE YOU WERE THERE AND DISCUSED A COARSE OF ACTION OF REDUCING YOU PAIN LEVEL TO GIVE YOU RELEIF.

IS THIS DR. A TOTAL MORON OR DOES SHE PUSH HER PATIENTS THROUGH THE GATES LIKE CATTLE GOING TO THE MARKET.

I WOULD HAVE A LIST WITH QUESTIONS IN HAND.

IF THE PAIN PERSISTS I'D GO TO THE ER,MAYBE YOU CAN GET SOME RELEIF THERE.

T

[Quixotic1]

The arrogance and narrow-mindedness they are showing makes me want to throttle them.  Hmmm....I wonder if Dr. M would agree to see the whole forum.

Just becasue you are weaning off the other meds does not mean they can't treat your pain.  That is ridiculous.  I can't give  you medical advice here, but if you could take the percocet while ON the higher doses of meds, I don't see why you couldn't take the percocet while on a LOWER dose of them....if ya think about it.  Being in severe pain is not good for you.

I hope you understand.  Quix

[Rena705]

I think it's like one candy bar per kid on Halloween or something like that...I really don't know and I am just about ready to go over the edge with all this...not sure what to do...gettin' so I don't care, just want to walk away...

[sllowe]

Rena Girl!!

Oh, I  just have too. . .I can't help myself . .WTF is ONE Subject Per Visit!???????????????&*%$. . .

I'm retiring for the night, but read this, and just couldn't refrain from commenting.

You have my support, RenaGirl, and I haven't thought this through enough to provide advice, but surely, some will have something to give you for your next visit. . .

chat tomorrow,
SL