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Good Stuff to share

Postby SLL on June 17th, 2004, 2:51 pm

So coming off my posting that caused a stir - apologies again, I just got back from a neuro visit and just wanted to share his thoughts on this whole thing. I went to a different neuro, someone I have never seen, for a second observation.

BFS DOES exists - sees it all the time. Said definitievely, people who go on to have ALS come to see him because of one complaint WEAKNESS. NOT twitches. He said "you do know that the first symptom nine out of ten times if weakness, right?" He also said ANY muscle can twitch in benign fasciculation - no one muscle is more concerning that the other.

Asked him about bulbar presentation. He said those patients are drooling, have a very bad sounding voice and are CHOKING when they eat...not "have a lump feeling in their throat". That, as we know, is defnitively globus hystericus and is due to anxiety.

Started my exam - after I could stand on tip toes and heels, and jump a few times on each foot he shook his head, chuckled and said "well, you do not have leg onset of anything cause you would NOT BE ABLE to do that."

Did my reflexes...said how much they can tell from just the reflexes - they can rule out upper motor neuron involvement in just those few taps - spasticity, clonus, stiffness, etc.... when normal, it tells them so much that the central nervous system itself is not compromised.

Had me stick out my tongue and just from being able to do that, said "normal tongue strength". He pretty much ended it there and said "stop worrying".

One thing he also shared is that other conditions we may have may make have something to do with our BFS. As example, I have vitiligo, a skin condition. Harmlesss, but it is an auto-immune disorder where my body chooses to kill off its only melanin (I have white spots on my hands, feet, etc..) he said that melanin runs along the same neurotransmitters as what makes muscles twitch..so he is not surprised. I had NEVER been told this before.

so for what it is worth....they are ALL saying the same things, and no matter what I read out there any more about the quirky things on the net, I am going to put more faith in these guys. I will have my ups and downs, as we all do, but we have to believe them cause they see more of this than anyone and they are TRAINED. He did tell me a funny story about how he, after two weeks of headaches, convinced himself he had a brain tumor...ordered up all the tests, to find he had a disc issue. He calls it "Medical Students Disease" where they get every symptom they read about.
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Postby thetwitchkid on June 17th, 2004, 2:56 pm

SLL:

Great Post. Thanks for sharing the info. It is very re-assuring.
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Postby amy_twitch on June 17th, 2004, 3:19 pm

VERY interesting info about the vitiligo. I think I am starting to get this...I too have some white spots on my arms--I especially notice it now that I'm out in the sun more and the rest of my skin is getting tan.

I do have a positive ANA which indicates something autoimmune...though no doctor has yet to be able to figure it out (No lupus, No MS, no connective tissue disease).

I'm wondering if a lot of other people on this board have a positive ANA blood test...it's very simple to get. Have you ever had one yourself SSL? Just curious. I would assume yours would be slightly positive due to the vitiligo. In lupus and other conditions the test count is quite high. Mine is very low...but I'd forgotten to consider vitiligo as the cause.

Thanks for the report!
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To Amy

Postby SLL on June 17th, 2004, 3:47 pm

funny...I have not had the test, have had the vitiligo since I am 10. Has gotten worse in the last 4 years...hmm...have been twitching for about 5 years. He said to me that the correlation is metabolic in nature BUT with such a small degree of change that they could not detect it on a blood test. I told him my brother has the dry version of macular degeneration (eye disease) and THAT is also part of this family of issues.

He recommend things like Effexor to help this. It is NOT an Serotonin uptake inhibitor like Paxil I believe is, rather a - I think - neuroepinephrine uptake inhibitor (I hope I got that right!)

HE also said that by the time people twitch, if there were anything sinister happening, there would be SO many other symptoms and signs. TRUE disability. He also said adrenaline causes us to twitch - what do you think causes anxiety...adrenaline. it also cause lump in the throat feeling, dry mouth, nausea, heart racing...etc...

I told him I wanted to think a day or two first before jumping on medication and would call him back.
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Postby garym on June 17th, 2004, 4:15 pm

SLL,

i don't know anything about effexor, but the word you were looking for is norepinephrine.

I wasn't trying to be a smarty pants, but thought i would chime in :? .

Gary

Also, a good place to look up different meds. is http://www.remedyfind.com I like this site because people actually rate their experiences with the drugs. You get some real world feed back.
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Postby seeking_calm on June 17th, 2004, 6:38 pm

Thanks for the posts. Now I have something to think about when I go see my neuro in a few weeks. The part about adrenaline sounds right. My symptoms are super magnified when I'm stressed or nervous.
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Re: Good Stuff to share

Postby YYYYT on June 23rd, 2004, 9:39 pm

Had me stick out my tongue and just from being able to do that, said "normal tongue strength". >>

God bless ya for posting that
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Re: Good Stuff to share

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