don't feel the need to read this, it's going to be long..LOL

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first of all, thank you all so much for your concerns and supports...I apologize for not being around lately, getting ready to explain why...

I met the new neuro (no, I have never met him before but he's supposed to have an excellent reputation. He's only been around town for 6 months) and as soon as I saw him, I knew he had TS although he never admitted to it. But it is just too apparent although I can see him trying to suppress it while I was there. (this would be sign number 1 for me)

the first thing he told me was how excited my doctor has sent me to him. But not in a sense of, "oh yeah, nice to meet you" but more like "wait til you see what I got that can CURE you..."

without asking me any questions or letting me talk, really, he just launched into what is TS, and the history of it, and what meds are used...

I just sat there and listened. I did think to myself, "OK, well, I have TS...I know what it is, but I guess he might think that this is my first time and that I am just finding out what it is..."

so, I let him talked...and talked...and talked...

finally, I told him that I was familiar with TS and as I was about to explain to him about my history...he cut me off...

I think I might have offended him??

He then asked me what meds I took...I mentioned a few and he just nodded his head and said well, those are exactly the ones to treat TS.

with Haldol and Orap being the forefront but he has a secret weapon.

"Abilify"

I told him that because of my past experiences with meds, I was wondering about the alternatives...I suggested bo-tox...he scoffed at me and said: "For that??"

I looked at him and said, "but I've had it done before, not for this problem but for another"

he won't hear of it...cut me off again...I was going to suggest 10s unit but he just didn't really gave me another chance to talk...

he then started about how wonderful abilify is and I asked him is it in the orap family. He says yes but it is well tolerated and very low side effects.

I told him about my panic attack with Orap (this is where I made a mistake)

he scoffed at that...he said Panic attacks are NOT associated with Orap..

I was just a bit shocked thinking to myself...are you calling me a liar??

but I kept it cool...and listened...

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side bar:

as moss would tell me later, while panic attacks are NOT associated with Orap. What I felt were Extrapyramidal symptoms and they were AWFUL...worse than actual panic attacks...

for example, the worst one that I suffered was when I felt like a million ants were crawling inside my chest...and I scratched and I itched and I was almost to the point to get a kitchen knife to cut my chest open.

Luckily, I was visiting my parents at the time and my mother caught me and took me immediately to the hospital. 30 some hours later, they finally got me out of the dilemma but it was so bad they couldn't even sedate me. Just kept on giving me cojentin(spelling).

with Orap, the Extrapyramidal (ep) were often and hard to take, but after that experience I took myself off of Orap immediately....

went on Zyprexxa...not much better...

anyways, this is my point back to the doctor...I made the mistake of using panic attack vs. ep (but I didn't know it was ep).

But I DID described the symptoms to him. I would think that as a neuro(he also holds a dual degree in psychiatry) that he would understand what I was talking about and not hold the semantics and the jargons over my head?

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anyways, I agreed to take abilify and got talked into taking lexapro as well...

I did tell him that I was taking cymbalta and while the only side effects were some nausea in the beginning and then constant sleepiness, I actually was liking cymbalta (this was prescribed by my regular doctor) for what it was doing for my hand. (I didn't like what it was doing to other parts of me, but more on that later)

I find that cymbalta, while it didn't take away my tics, really eased my pain levels.....and that was a plus....I have a high threshold / tolerance for pain so when it got to the point of that type of pain that it was bugging me, I knew I was in trouble....so cymbalta does help in that respect...

he scoffed at the cymbalta also...LOL

to sum it up, that visit just was a one sided visit...but you know, I figured he was "excited" and I think he has TS (thus more compassion??) and that I'd give the abilify and lexapro a shot...

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well, I got the "Extrapyramidal" attacks with Abilify...not the bad ones, yet...but bad enough that I couldn't function...

I called him finally...and got his assistant and told her the situation...she called me back and said he said, " tell him that he's got 'Anticipatory panic attacks' and that if he doesn't take the abilify, he'll have go back to Orap"

and that was IT..

I have to tell you, I was ******....that's all I got from him...not a take a benedryl, or come see me...but because I told him about my past experience he is telling her to tell me that I "ANTICIPATED" this attack...I guess this is where his dual psychiatry degree came into play...so he can "psych" judge me now...

now, I am not highly suggestable...I have tried to get hypnotized before and I pretended to be hypnotized to make the doctor feel better..but it didn't work...

so, I took myself off the meds immediately. But still suffering from the attacks..I am also finding I am now getting photosensitive...

this is where you would probably laugh...moss came home to find me typing with sunglasses on, salonpas patches all over my hand and neck and wrist straps and neck straps
along with head strap (not sure why, but a head strap made my panic attack better)

and I've been like this the past few days. Even though I've now taken myself off the meds, the attacks are still around but less frequent now..

it is only today that I feel good enough to come on and type. The glare of the puter screen simply puts me in a state of panic...

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now, I don't want to take Abilify away from anyone that finds it working for them...

I am very sensitive to all meds....and I fall into that small group of people that just get the worse symptoms..

I didn't want to get into mentioning the stuffy nose and diarrhea that came with the abilify (oops, just said it out loud, didn't I?) but I was truly miserable not just with the panic attacks...oh wait, EP attacks...

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bottom line, I am not going back to this neuro. I don't care how excellent his rep is and I don't care if he has dual degrees and is smarter than a 3 headed chicken

and I don't care if he has TS....I just didn't get a good vibe and I was offended (and it takes a LOT to offend me!!) that he has the nerve to suggested that I "Anticipated" myself into the attacks...

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I do however, love the spine doctor...

basically, my C-6 and C-7 are screwed up. Wear and tear and bulging disc. My prognosis isn't too good.

He says the only option for this kind of deterioration is usually surgery, but with my tics, how would I heal?

I asked him how bad it can get to if I don't get it fixed...well, continued weakness and lost of balance would be it...

he also suspects that I have other spine issues and will do an MRI in a couple of weeks. (He wants to do it sooner but we are leaving to pick up the grandmoisses)

so, won't know until after the MRI

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like a normal human being...I was a bit dehanded after the news...or defeeted...wait, defeated...

but you know how you have truly come into being with yourself?? I am not the same person that I was a few years ago...where I let myself thinking things into oblivion...

I am just going to deal with it as they come...going to wait until after the MRI and see what all my options are...and then deal with it...

if I lose balance, so be it, if I get weak, so be it...I am very lucky...have a great wife and great support group like you all...

I thank you all so much from the bottom of my heart...

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there is something from this meeting with the neuro that has solidfied my beliefs...

1) COMMUNICATION IS THE KEY.

I don't care how many degrees he holds or how excellent his rep is or that he has something similar to mine...if he didn't LISTEN, it meant NOTHING

2) My own communication needs to be clearer...if I had said EP instead of panic attacks, I wondered if it would've at least made a little bit of difference

3) I like who I am now that I am not letting this defeating me...I am not the same moi that I was few years ago that I am now...gosh, it feels good to be MOI...you know what I mean??

4) I am glad the meds can work for others...but I am NOT going back on any of those meds again...I have found my creativity at zero when I was on these meds and while they helped with my pains they took "ME" away and I hate that...I'd rather live with my pains and be who I am...

I felt very disassociated on these drugs...

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once again, thank you all for your wonderful inputs and supports....

(((((BIG HUGS)))))