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-   -   So NOT happy! (https://www.neurotalk.org/multiple-sclerosis/38801-happy.html)

braingonebad 02-14-2008 09:27 AM

Quote:

Originally Posted by Gazelle (Post 214431)
Judy,

Thanks. :) Good advice for people.

I began to suspect that the guy was lying to me when he told me he'd done well over 100 LPs. I think that if he actually did, he did them on the LPs through the hole in the middle where the spindle went. At least he didn't practice on 45s. Seriously, how do you check to see if someone's experienced when they say they are unless it's afterwards? There was no way that I was going to let a med student do it.

*sigh* The only thing I'm happy about is that it's over, I'm nearly back to normal, and I'll get results.

I asked my neuro surgeon how many ACDFs he'd done and he said something like 10's of 1,000s ..... he was maybe my age. I tried to do that math in my head.

"Don't leave much time for golfing huh? Any of em live?"

No wonder he didn't like me much.


Q for you... did you mention (maybe I missed it) spine MRIs? Brains are easy to read. Spines, eh, not so much. Maybe get repeats and pass them around.

BTW, I like the Eagle. That's on my bucket list, get a pic of one of those arrogant snots if I have to twist an ankle chasing around the yard.

:p

Gazelle 02-16-2008 10:43 AM

:eek: You said THAT to him? And you let him WORK on you after that? :eek:


Yep, had a spine MRI, which showed a thoracic lesion. Hopkins guy wants that repeated too. Maybe he's getting a kick back from the tests. I'm sure the insurance company doesn't like him much.

Regarding bald eagles--I saw one last year for the first time. I was driving in some relatively remote area and saw a big bird flying around. Thought it was a turkey vulture. Got closer and the dang thing kept getting bigger, and bigger, and bigger..... Well, by the time I was up on it, it was about 6' or more of wingspan and I realized it was an eagle. BEAUTIFUL bird. They are just amazing to see first hand.

I have to work on a list. I saw The Bucket List in the theatre and thought that it was great. I gotta get me one of them. The only thing that's on it right now and has been is to ride a Clydsdale. I want to sit one of those suckers at a trot!

lady_express_44 02-16-2008 11:23 AM

My first experience was TM, and I as told it was either idiopathic or may turn out to be MS. There were left-over symptoms (after I recovered from paralysis) that went on for the next 12 yrs, but I never had another attack like what I had experienced previously. I thanked GOD every day, if that was what MS going to be like! :eek:

I too had a botched spinal tap. In the middle of the procedure, I flew out of the bed where I had been laying face down with my head propped up. They stopped the procedure and immediately took me up to the Brain Trauma Unit, where I spent the next week under round-the-clock observation. It was seriously touch and go . . .

Fast forward 12 yrs, and I had another "TM" attack. They waited to see if the same body parts/limbs would be effected, and when the paralysis creeped higher, and numbness went to my face this time, they knew they had the "space" (and time) that would verify MS.

I finally agreed to a MRI (I refused any more testing up till that point), and they found the original lesion in my T-spine, the new one in my C-spine, and three little ones in my brain. MS was confirmed.

TM can lead to a MS dx, or can be a stand alone problem. Spinal lesions are a whole different kettle of fish, even if it is MS, and my specialists have advised that there is no drug on the market that can influence them. If you had brain lesions, then perhaps the CRABs may be recommended, but it doesn't sound like you have evidence of brain one's anyway.

Basically, it's a waiting game for you now . . . until the next big or obvious attack. The LP may show O-bands, but that does not mean you have MS either. LP's are meant to rule out other illnesses, not rule in MS.

To be honest, from what you've said, it sounds like a MS dx might be inevitable. I would definitely ask if having O-bands will CONFIRM a dx of MS at this point in time anyway though. Why go through it otherwise?

Cherie

Jan4you 02-16-2008 04:33 PM

Gazelle... what an awful experience. I too would've trusted the guy at first, not knowing what to ask or expect. BUT after reading others' posts on the subject of LP I was prepared and it went exactly like it was supposed to.

Those of you that have had a horrible experience YESSS must be in a special group !! I agree.

But Gazelle.. your avatar IS a test.. for me anyhoo. LOL
I dont really see the Bald eagle. I see BIG FOOT with a turkey in front of him!! LOL

Take care

Warmly, Jan

Gazelle 02-16-2008 10:12 PM

Quote:

Originally Posted by Jan4you (Post 217210)
Gazelle... what an awful experience. I too would've trusted the guy at first, not knowing what to ask or expect. BUT after reading others' posts on the subject of LP I was prepared and it went exactly like it was supposed to.

Those of you that have had a horrible experience YESSS must be in a special group !! I agree.

But Gazelle.. your avatar IS a test.. for me anyhoo. LOL
I dont really see the Bald eagle. I see BIG FOOT with a turkey in front of him!! LOL

Take care

Warmly, Jan

Maybe I should keep this avatar if only to see how many different things people call it!


Holy Christmas, Cherie, that sounds like a horrible experience with the LP and with the first bout of TM too. My neuro never even mentioned TM at the time it was happening. I had no clue what was going on--just knew that I was getting sicker and sicker and no one was doing anything or giving me anything for the SX.

I'm actually on Copaxone. The Hopkins guy says that he isn't sure I need to be. Ok, fine. I don't like sticking myself every day either. Makes me feel great about taking it.

But I do (or don't--depending on who you believe) have brain lesions (and if the Hopkins guy is wrong, I do according 2 neuros).

What gets me is that my first neuro said in 2003 that a spinal cord lesion couldn't account for the SX I was having above the thoracic level. I also asked him about sub-MRI level lesions and he said that was a possibility. His partner saw two lesions in 2005 and DXd me with MS.

I don't know anymore. I'm more frustrated now than I was before. Maybe there is an MS dx in my future that all can agree on. I just wish that I knew whether or not I should be taking the Copaxone. This isn't an easy decision--stop it and risk or take it and not need it.

Seriously, what do you do in this situation?

snoodles 02-16-2008 10:16 PM

OMG Gazelle !!!
Just horrible - don't think I could have stood all that and I can only imagine how sore you are.... :hug:

CayoKay 02-16-2008 10:19 PM

Quote:

Originally Posted by Gazelle (Post 217419)
Maybe I should keep this avatar if only to see how many different things people call it!

I see a side-view of a lady dancing.

she's wearing a white hat (like a beret) and has reddish hair, a long full swirly grayish skirt, and an orange-ish shirt.

she's doing the flamenco or something, because her skirt swirls way up and around.

anybody think I need my *eyes* checked?

:)

lady_express_44 02-16-2008 10:31 PM

Quote:

Originally Posted by Gazelle (Post 217419)
I'm actually on Copaxone. The Hopkins guy says that he isn't sure I need to be. Ok, fine. I don't like sticking myself every day either. Makes me feel great about taking it.

But I do (or don't--depending on who you believe) have brain lesions (and if the Hopkins guy is wrong, I do according 2 neuros).

What gets me is that my first neuro said in 2003 that a spinal cord lesion couldn't account for the SX I was having above the thoracic level. I also asked him about sub-MRI level lesions and he said that was a possibility. His partner saw two lesions in 2005 and DXd me with MS.

I don't know anymore. I'm more frustrated now than I was before. Maybe there is an MS dx in my future that all can agree on. I just wish that I knew whether or not I should be taking the Copaxone. This isn't an easy decision--stop it and risk or take it and not need it.

Seriously, what do you do in this situation?


I don't take the CRABs, but that is mostly because medications and I just don't get along at all. :( I am not sure that I would take them anyway, but that is just me.

If you have brain and spinal lesions, and you've already adapted to Copaxone, I'd say you may-as-well stay on. It sounds like you do have MS, and that is what most neuros would recommend.

Cherie

Gazelle 02-16-2008 10:34 PM

Quote:

Originally Posted by CayoKay (Post 217425)
I see a side-view of a lady dancing.

she's wearing a white hat (like a beret) and has reddish hair, a long full swirly grayish skirt, and an orange-ish shirt.

she's doing the flamenco or something, because her skirt swirls way up and around.

anybody think I need my *eyes* checked?

:)

Now that you mention it, I see a Toulouse Lautrec Can-Can lady break dancing. Her boots are a bit on the orang-ish side, her petticoats are swirling all around, and her hands are on the floor.....

Cayo, you and I need to go drinking sometime (in a very safe place where no other people are around so they don't commit us).

CayoKay 02-17-2008 12:24 AM

Quote:

Originally Posted by Gazelle (Post 217440)
Cayo, you and I need to go drinking sometime (in a very safe place where no other people are around so they don't commit us).

sure!

but only if you *promise* to 'splain your sig.tag.

:D


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