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Old 01-16-2008, 08:06 PM #1
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Default Had a neuro appt today..........Surprise! Surprise!

OK! Get this! I needed to see my neuro since it had been one year and my four Rx's needed refill. I called the office on Monday and left a message. I called again Tuesday and left another message. Tuesday afternoon the secretary calls and lo and behold they had a cancellation and they could see me at 10:30am on Wednesday morning. Needless to say, I grabbed the appt.

Went to the neuro appt this morning and she started the pounding with the hammer. No reflexes in the arms, inside and outside of the elbow, none in the wrists, minimal reflex in the knees, which used to be hyper-flexive, and no reflexes in the feet. OK, am I dead here or what? Then came the pin. I could not feel is sticking me in either leg, arm, or cheeks. Then the tuning fork. Could see it, hear it when on my cheeks, but no feeling of the vibrations. She also did the hot/cold test using the metal tuning fork. Right side of my body it felt warm to hot. Left side was cool to cold.

All the while she did all of these tests she was saying, "wonderful," "great," "super," "just great." I never got the impression these statments were of a positive nature, if you know what I mean?

I also have had a problem for the last two weeks of a stabbing and constant nerve pain from under my right shoulder blade, through my shoulder, tricept, elbow, and down my right arm stopping a few inches up from my wrist. Wonderful!

Bottomline is, MRI w/without contrast on the new Tessia machine of the cervical and thorasic spine. I learned today that in 2005 I had bone spurs in my cervical spine. She thinks possibly they have moved and now impinge on the cervical spinal cord or it could be severe continued deterioration of the motor neurons from the Hereditary Spastic Paraplegia (HSP). If it isn't the bone spurs then I'm screwed as there is nothing they can do for me but manage the chronic pain.

Sorry this is so long but I wanted you to fully understand my situation for today.
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Dx'd 12/00 w/RRMS
Dx'd 05/01 w/SPMS
03/05 Rescinded MS Dx Neuro thinks something else
03/06 New Dx of Hereditary Spastic Paraplegia (HSP)
Rare deteriorating motor neuron disease. No cure. No Treatments.
Only 20,000 Dx'd patients in US
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Old 01-16-2008, 08:23 PM #2
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Gee Craig, sounds like you had fun today! Sorry, sick sense of humor I know.

I am in a clinical trial so every time I go for my appts I get those wonderful exams. Doc brings out the pin and pokes me. He wants a response that I finally, last appt, figured out. Does it feel like a pin! Yes or no. I just keep telling him whether or not I can feel it. I usually lay there with my eyes closed and give no response b/c I cannot see what he's doing! I guess I am a frustrating patient for him. Sometimes I can feel the tuning fork and sometimes I cannot.

The other thing that gets me is when he grabs my foot and does the scaping along the bottom of it and tells me not to jerk my foot away. I always laugh b/c I cannot feel what he is doing so why would I jerk? I haven't felt the bottoms of my feet in 6 years!

I hope they figure out what's going on with you and it's not something that is not fixable...
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Old 01-16-2008, 08:47 PM #3
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((((((((((((((((CRAIG)))))))))))))))))))

I don't know what to say other than I hope there is something they can do to help you with your pain. I'm truly sorry!

All the best,
Chris
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Old 01-16-2008, 09:03 PM #4
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I'm sorry Craig and I hope it is a bone spurs and not the other alternative. I hate your disease, too..

Sending Prayers and Hugs and Hope.
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Old 01-16-2008, 09:21 PM #5
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Craig you really had a day. I hope and pray that it is the bone spurs.
With all the technology we have today you would think that they could be able to give you a dx and not have you going in circles.

Be strong!

Joyce
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Old 01-17-2008, 11:12 AM #6
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Hi Cheryl, Chris, Sally, & Joyce,

I'm surprised! I thought you all would have picked up on the "Surprise!.....Surprise!" part of the post.

I can deal with the testing, pain, and whatever outcome there is from it. I'm just like that. I try to NOT let my situation get me down and roll with the punches like everyone else here.

The big surprise for me was getting a call back from the secretary on Tuesday and getting an appt for Wednesday morning, rather than having to wait a month or two for an opening.

I'm lucky in that I get great treatment from my Adult Nurse Practitioner who has taken over my case after I fired my other neuro. She works closely with the top doc of the practice so that also helps. No complaints about my neuro visits or experiences at all.
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Craig Mattice
"Live Like You Mean It!"

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Dx'd 12/00 w/RRMS
Dx'd 05/01 w/SPMS
03/05 Rescinded MS Dx Neuro thinks something else
03/06 New Dx of Hereditary Spastic Paraplegia (HSP)
Rare deteriorating motor neuron disease. No cure. No Treatments.
Only 20,000 Dx'd patients in US
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Old 01-17-2008, 12:09 PM #7
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Quote:
Originally Posted by HSPCraig View Post
Hi Cheryl, Chris, Sally, & Joyce,

I'm surprised! I thought you all would have picked up on the "Surprise!.....Surprise!" part of the post.

I can deal with the testing, pain, and whatever outcome there is from it. I'm just like that. I try to NOT let my situation get me down and roll with the punches like everyone else here.

The big surprise for me was getting a call back from the secretary on Tuesday and getting an appt for Wednesday morning, rather than having to wait a month or two for an opening.

I'm lucky in that I get great treatment from my Adult Nurse Practitioner who has taken over my case after I fired my other neuro. She works closely with the top doc of the practice so that also helps. No complaints about my neuro visits or experiences at all.
We're all sick, Craig! Thanks for pointing out the obvious! I guess I am used to calling my Neuro and getting in either the same day or the next day! Lucky me, I guess! Glad you got in so quickly!
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Old 01-17-2008, 03:26 PM #8
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Quote:
Originally Posted by HSPCraig View Post
Hi Cheryl, Chris, Sally, & Joyce,

I'm surprised! I thought you all would have picked up on the "Surprise!.....Surprise!" part of the post.

I can deal with the testing, pain, and whatever outcome there is from it. I'm just like that. I try to NOT let my situation get me down and roll with the punches like everyone else here.

The big surprise for me was getting a call back from the secretary on Tuesday and getting an appt for Wednesday morning, rather than having to wait a month or two for an opening.

I'm lucky in that I get great treatment from my Adult Nurse Practitioner who has taken over my case after I fired my other neuro. She works closely with the top doc of the practice so that also helps. No complaints about my neur
sits or experiences at all.

Well Craig I didn't get what you meant. My brain was asleep.
But I too am lucky if I call the drs. office they will get me in that day or at least the next day or two.

Joyce
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Old 01-17-2008, 09:04 PM #9
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Craig
I'm glad to got in to see the doc. Not thrilled with the outcome. My fingers are crossed for bone spurs. Keeping you in my thoughts.

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