My Story...

Information about how to manage or reduce the severity of BFS symptoms

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My Story...

Postby angusglover on December 28th, 2012, 2:02 pm

Guys

if any of you remember me, you will see I have been going through this for many years. For me the story is now over, I do not have BFS, I have Syringomyelia. I am seeing the neurosurgeon on the 11th so will let anyone that cares know what the plan is.

Stay Well everyone...

Later
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Re: My Story...

Postby aztwitchy on December 28th, 2012, 2:12 pm

guess thats good and bad...you have a solid diagnosis but sounds like a surgery forthcoming. Brighter days ahead!

sorry and happy to hear of this for you. hope you get better real soon!
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Re: My Story...

Postby angusglover on December 28th, 2012, 2:16 pm

aztwitchy wrote:guess thats good and bad...you have a solid diagnosis but sounds like a surgery forthcoming. Brighter days ahead!

sorry and happy to hear of this for you. hope you get better real soon!


Not sure if it is good or bad. 20% of people die before 47. Surgery may work, or at least halt the progression for a bit. It is usually slow going so I may have a few years. I am 43.

SO, surgery is a likely next step, sure hope it works.

Stay Well...
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Re: My Story...

Postby aztwitchy on December 28th, 2012, 2:24 pm

not sure where you see the 20% stat but curious why your initial MRI didn't pick it up? did they tell you the suspceted cause of this in your case?
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Re: My Story...

Postby angusglover on December 28th, 2012, 2:33 pm

aztwitchy wrote:not sure where you see the 20% stat but curious why your initial MRI didn't pick it up? did they tell you the suspceted cause of this in your case?


Yeah, not sure why this was not picked up in original head and neck MRI. It is either due to my scoliosis or a bike accident I had in 2000.....
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Re: My Story...

Postby aztwitchy on December 28th, 2012, 2:42 pm

that is BS....was it on your original MRIs??? do you still have the films or can you get them? I know doctors make mistakes but did they reveiw your previous mri to determine why it was missed?
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Re: My Story...

Postby Jujulia on December 28th, 2012, 2:55 pm

Hey Angusglover,

I'm sorry about your diagnosis. It sucks. I hope it will progress VERY VERY slowly so you can stay with us another 50 years :)

Tell me, do you have (constant) back pain? near the spine or elsewhere? Is your twitching constant and widespread too? I have constant upper back pain, close to the spine, that started a couple of weeks before the twitching but the MRI (without contrast) done a year later didn't show anything special except a couple of minor hernias around the c4-c5 areas.

Was your last MRI done with contrast?

All the best.

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Re: My Story...

Postby angusglover on December 28th, 2012, 3:16 pm

Jujulia wrote:Hey Angusglover,

I'm sorry about your diagnosis. It sucks. I hope it will progress VERY VERY slowly so you can stay with us another 50 years :)

Tell me, do you have (constant) back pain? near the spine or elsewhere? Is your twitching constant and widespread too? I have constant upper back pain, close to the spine, that started a couple of weeks before the twitching but the MRI (without contrast) done a year later didn't show anything special except a couple of minor hernias around the c4-c5 areas.

Was your last MRI done with contrast?

All the best.

J.


I have constant lower back pain, aching legs, aching arms, neck and head. my issue is at c5\6 so not good. It sucks, I am doomed to a life of worsening pain...and then disability and death!!!
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Re: My Story...

Postby aztwitchy on December 28th, 2012, 3:26 pm

angusglover wrote:I have constant lower back pain, aching legs, aching arms, neck and head. my issue is at c5\6 so not good. It sucks, I am doomed to a life of worsening pain...and then disability and death!!!


is this what your doctor said?

the web says:
Expectations (prognosis)

Without treatment, the disorder gets worse very slowly. Over time it will cause severe disability.

Surgery usually stops the condition from getting worse. About 50% of people will have improvements in nervous system function after surgery.
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Re: My Story...

Postby Jujulia on December 28th, 2012, 3:34 pm

I suppose every case is different. Read as much as you can about this condition; try to find forums with people with the same problem, maybe you'll find some good info on what you can do to help yoursel... doctors don't know everything. Anyway, I know I'm not helping a lot, but I'll be thinking about you and try to stay positive, it's Christmas time and miracles are possible ;)

Good luck and please keep us posted.
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Re: My Story...

Postby Yuliasir on December 29th, 2012, 1:45 am

Well, as far as I know, most probably the trauma is a cause for SM. In case of traumatic SM any statistics of survival like you presented is a bit strange because you know, people can have traumas at ANY age, so more correct would be, for example, to say that they survive for a certain period AFTER trauma, not like one fifth of all injured people do not survive 47. So I believe the figures you find should be true only for inherent SM. Because you definitely had bike accident and neck trauma, I am pretty sure you should not dim your days with that 47 limit. Yep, pain. Yep, maybe some degree of clinical weakness in hands and chest muscles. Surely you must be more careful with heavy hand work like brazing or cutting because SM people often have low sense of pain and burns and can damage themselves severely. But not a death in few years and even not always a disability like paresis. Seems like draining the syrinx often helps relieve a pain, and good pain medication still exists.

Wish you a good relief with the surgery, my friend.
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Re: My Story...

Postby christo on December 29th, 2012, 4:25 am

According to many french medical website, today Syringomyelia doesnt seem to lower life expectancy, I am sure you can expect a really long life :)
I wish you all the best.
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