UCSF ALS clinic visit

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UCSF ALS clinic visit

Postby Ghayes420 on May 4th, 2012, 3:46 am

Hello Twitchers. Many of you know my story. I am a 9 month BFS Gold Card Member. I twitch, excuse me, I have true fasciculations constantly on my body 24 hours a day, 7 days a week. From head to toe, there is not one place I have not twitched. I twitch when I sleep like I am a piece of bacon in a frying pan on most nights. I wake up and stretch and almost try to get up quickly now so I don't feel the twitching which sets in upon first awakening. I get many many other symptoms. My anxiety was recently elevated due to my tongue and the odd 'feelings' and 'sensations' that I can only describe as fatigue of the tongue setting in making it feel 'fat' as if I could slur my speech or not swallow but always do both with no problem. i get many sensory symptoms, buzzing, tingling, and numbness. These all come and go and never stay for more that 3-5 days. I don't cramp per say, but i get very deep muscle pain in my calves and other major muscles, like a deep pain but the joint is not affected. I have a laundry list of other symptoms. Too many to go into detail.

This was my second visit to the UCSF Clinic. They are ranked at the #5 best neurology clinic in the nation according to Playboy, I mean US News and World Reports.

My wife accompanied me to the meeting and was there to hear this all for herself as well. Here are a few bullet points from our meeting....

-My reflexes were normal and my strength was good. I passed the clinical exam with flying colors.

- She sees about 1-2 BFS cases every month for the past 13 years.

- She herself had benign fascics in her upper body for five years. they have since subsided to occasionally showing up when low on sleep.

- "The more wide spread, the more you can 'feel' the twitches, this is a big indicator that these are benign."

- My reflexes were normal. she said that the most important is Babinski's. we talked about ankle clonus, she said that ankle clonus is meaningless without a positive Babinski's reflex.

- ALS never presents with the sensory symptoms I describe above.

- AlS very rarely, if ever, presents with pain

- She has never in her 13+ years heard of a tongue complaint like the one i describe.

- benign tongue twitching is very common. ALS tongue twitching is very obvious. telling the two apart is very easy.

-this doctor is a bit of a skeptic on many levels. without going into detail, she has seen some odd presentations of MND in her day. My initial EMG was clean and so was the clinical. Now i have a clean clinical again at 8 months. Regardless, she wants to see me in August for a one year EMG. I don't know why she requires this.This is her normal approach to BFS cases. I will ask Dr. Miller at Forbes Norris on 5/22 to see if he has any similar experiences in this BFS realm.

- she feels the key to beating BFS is proper diet, sleep and a consistent workouts.


So bottom line is that I am starting to become a believer. At the end of this month, I should be done with this, and be ready to move on past this.

Many thanks to the many people that have helped me battle this along the way! I thank you all for your help. :D i look forward to returning the favor to many new twitchers along the way.
Greg
A very proud fasciculator since 8/14/2011. :)
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Re: UCSF ALS clinic visit

Postby Yuliasir on May 4th, 2012, 4:58 am

great news Greg!
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Re: UCSF ALS clinic visit

Postby mwagner on May 4th, 2012, 1:46 pm

Greg,

Thanks for the update! I'm glad you're doing well, and you got a good second clinical exam. I'm not sure why you have to do another EMG either, except for her and your peace of mind, right?

Who is this other doctor you're seeing in May?

Mitra
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Re: UCSF ALS clinic visit

Postby wjjw on May 4th, 2012, 4:38 pm

When do I get the keys to your house?

Cheers,
Bill
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: UCSF ALS clinic visit

Postby chicagobfs on May 4th, 2012, 8:38 pm

Great Greg! All the best to you:)
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Re: UCSF ALS clinic visit

Postby dreadpirateroberts on May 5th, 2012, 8:10 pm

Yes, good news. As to her request of doing another EMG, I have one as part of an "annual" checkup. Kind of like a regular physical, but focus on neuromuscular. My neuro is firmly convinced that what I have is CFS, but since this is not completely understood he wants me to continue to follow up each year (I'm in year three right now). So I've had three EMGs/NCTs. I have had clean EMGs, but never a completely clean NCT, but I have carpal tunnel and had a broken bone below my left calf muscle. Anyway, I agree with him (he is a top dog at the Ohio State neurology dept, neuromuscular specialty) that annual checkups are a good idea. For peace of mind and to see if there are any new things with meds, treatments, research, etc.
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Re: UCSF ALS clinic visit

Postby Shanny63 on May 6th, 2012, 3:22 am

great news greg...and im sure she is just doing the repeat emg for her benefit...u are fine.... :D
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Re: UCSF ALS clinic visit

Postby wjjw on May 7th, 2012, 3:51 pm

dreadpirateroberts wrote:Yes, good news. As to her request of doing another EMG, I have one as part of an "annual" checkup. Kind of like a regular physical, but focus on neuromuscular. My neuro is firmly convinced that what I have is CFS, but since this is not completely understood he wants me to continue to follow up each year (I'm in year three right now). So I've had three EMGs/NCTs. I have had clean EMGs, but never a completely clean NCT, but I have carpal tunnel and had a broken bone below my left calf muscle. Anyway, I agree with him (he is a top dog at the Ohio State neurology dept, neuromuscular specialty) that annual checkups are a good idea. For peace of mind and to see if there are any new things with meds, treatments, research, etc.

Just curious. Has anyone on this entire board ever benefitted from yearly follow ups? Something like a neurologist saying (in year 4) "Oh, now I see what's going on!" and doing something that got rid of the symptoms? If not, I'd thank them for the initial consult and be on my way. That's just me. :)

Cheers,
Bill
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: UCSF ALS clinic visit

Postby johnnythejet on May 8th, 2012, 12:26 pm

Ghayes420 wrote:So bottom line is that I am starting to become a believer.

Awesome news Greg. I know your skeptical mind has worked against you for a long time and I'm very happy to see you come around. :)
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Re: UCSF ALS clinic visit

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