this can happen

[netimus]

I saw this story on a als:

In August 1996 Jen and I were in Mendocino, CA celebrating our anniversary. We both got massages, and after I got mine, I noticed some of the muscles in my back were twitching. I first reported to contract during a routine examination in January 1997. My GP referred me to a neurologist who I saw in May. Because there was no muscle weakness at the time, he could only diagnose me with "benign fasciculations" (spasms for no apparent reason).

In May 1998 I noticed that my left hand was getting weak. After a few months of procrastination, I went back to the neurologist who told me he was sure that I had ALS. There are no tests to confirm ALS. All they can do some procedures to rule out other causes for the symptoms. They did a couple of tests of nerve function, an MRI of my brain, and verification of heavy metals. When we returned to hear the test results, the doctor confirmed the diagnosis, and sent us to a MDA ALS clinic in San Francisco for a second opinion. They agreed.

the guy had been diagnostcado bfs then had als, agoa fikei in doubt

att
olimpio

 

[Tiber2011]

Hi there,

For future reference, do not re-type stories from the Internet like you just did.

1. We don't know where this came from.
2. It may or may not be the truth.
3. This is from 1998. Very old, outdated, and medicine and technology have improved.

What is your goal in typing this? To scare people?

I am not trying to be mean. But when there are people here who are dealing with anxiety and stress, things like this do not help.

 

[netimus]

friend
first apologize
do not want to scare anyone, but I'm taking it daily fasciculations, when I read a story this, like you think I am, I was too freaked out, so I made the topic to see um grain of truth in it
att
olimpio

 

[Nikki J]

It is also true that there is no proof that the bfs diagnosIs was incorrect. One can have one medical condition and independently develop another. No proof of correlation. An example My friend had a sinus infection and then got breast cancer. A person with bfs has the same risk of ALS as a person without. This anecdote says his back twitched and 2 years later his hand developed weakness reportedly from ALS. Does not seem very related even if the facts are true and not urban legend.

 

[Tiber2011]

friend
first apologize
do not want to scare anyone, but I'm taking it daily fasciculations, when I read a story this, like you think I am, I was too freaked out, so I made the topic to see um grain of truth in it
att
olimpio

Olimpio - I am similar to you. I go on the Internet and read.
You are not in the U.S, so I hope your doctors will be of good service to you. Please talk to them more. Ask them questions. Don't say that you were reading things on the Internet; to us or your doctors.

This is the Internet; for all we know, there may not be a grain of "truth" in many, many things that you read.

 

[Nighthawk]

Hey,

Is it possible for BFS to progress into ALS?
No. This is a common worry for those who have been diagnosed with BFS.

The number of people developing ALS after having been diagnosed with BFS is statistically the same as for the General Population.

As long as you have been diagnosed by a qualified Neurologist, you should have no concerns. If fact, many people suffering with BFS have reported that their symptoms increase with stress and worrying, so you are probably making your symptoms worse than they need to be by worrying about your diagnosis.

Fasciculations themselves can be present for years and not associated with a malignant condition.

However, if you start to develop new symptoms (such as weakness), and a change is your symptoms, see a Neurologist as soon as possible.


I hope this clarifies any misunderstandings created by this thread.


Regards,


Carlos

 

[ottawa girl]

Nikki & Carlos,

Please correct if I'm wrong - but neither of these DIHALS ( netimus & Tiber) have ALS. In fact, I thought each of them were told this by their doctor. Neither are gleeful .... they persist to second guess neurologists. I know they are looking for answers, and rightfully so - but where is the choke point when we as PALS and CALS, send them in their way. We're not doctors and even if we were, they wouldn't hear us anyway.

I say, let them get scared off this site or let them duke it out with the scariest of scary stories and/or what each of these newbies opines on the appropriateness of the posts on this forum.

I guess I'm a tad grouchy and envious today .. Doesn't happen often -and thankfully, I don't scare easy. :lol:.

 

[Nighthawk]

Thanks for your reply, Elaine.

I felt I had to jump in on this thread as it may mislead newbies into thinking that anyone with BFS may end up developing ALS. That's blatantly untrue, inaccurate, and dangerous.
Many people lurk on these forums on daily basis (a bunch of them just as "Guests") and posting something like "Netimus" just posted, instead of being informative, only contributes to spread misinformation and fear.

I hope next time he's more careful with what he posts here.


Carlos

 

[Nikki J]

Hi Elaine
What Carlos said!
And you are entitled to a bad day but to me you are never grouchy! And you are more than entitled to envy their freedom from ALS!
Best
Nikki

 

[JTorm]

I think is frustrating for both... DIHALS and Obviously for PALS who really battle the disease.

For instances, i have told y'all in other posts my story (classic story= twitches, weakness, denervation, nerve entrapments, some blood proteins high etc.)

I believe i have genuine reasons to be scare about ALS, and despite the fact that i try to be rational about my situation, then a new thing like a throat lump appears that makes me forget about rationality...

I perhaps might not have ALS, but another condition, who knows. Either way, limbo is frightening. It's frightening because, as most people, we are truly attached to life and if something "Bad" is making us feel different, we are gonna react obsessively scared.

here my 5 cents.

Jon

 

[vickim]

Here is my 2 cents.... Why let it take over your life? Everyone on here has learned to adapt and work around it. Yes limbo is not fun but we have all been through it and in the end it doesn't change anything. All the fretting, worrying, obsessing, and panicked anxiety doesn't change the out come good or bad.

It is time wasted that could have been making memories that you may need to carry you through the tough times. Searching the net for what? The net can't help diagnose, it only causes grief. Now if you know what is wrong it can be a life line and tool to inform and help.

Only the dr can help and treat and answer and diagnose. During the wait for all that go enjoy your life, make memories, learn to adapt, be of help to others. Find peace.

 

[JTorm]

Vickim, you remind me a lot of a friend who is a MD, Internist... and well, recently talking with her... she just looked in my eyes and told me, "Why are you wasting your time worrying... In fact, if you have the worst case scenario...Would worrying might reverse the situation? she asked."... I said No.

I was about to cry, but she as yourself are both right... that's why i'm trying the best i can to not worry despite the outcome...


We also talked about Gandolfini (the actor), she said: a guy, 51, enjoying his vacations with his family and all of a sudden, he dies... Its awfull but death is something we all gonna face.. so why not enjoy our life the most...


I think someday my mind will find that peace, i have been looking for....

Thanks V,

Jon