Carolmarie?

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Carolmarie?

Postby Twyla on July 29th, 2003, 9:53 am

Yesterday someone posted on the Braintalk/ALS forum under the username "Luvmycat" with a story that sounds very much like Carolmarie's.....almost identical really, including the exact date her symptoms started, headaches preceding, home state, etc.

http://neuro-mancer.mgh.harvard.edu/ubb ... 04356.html

This person is convinced she has ALS, but her docs say no, it's stress.

If this is indeed Carolmarie she was not given diagnosis of ALS, as she wrote here last month.

What do you all think?

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Postby dan123 on July 29th, 2003, 10:15 am

It sure does...I was very scare by her post because I had similar sx. It is funny how the negative things we read are way more powerfull than the positive...as for me, My GP said I was fine, the neuro said the same and I am having a EMG done this week to rule anything else out. After my test I am going to take all the positive and and move on...Only God know was is going to happen tomorrow or next week...Why are we worry about ALS if this Fear can become as bad becasue we will life for year with out enjoying our selfs. Those folk that have ALS would give everything they had to have BFS...so today and everytday let give thats to our God for what we have today and for what we will bring tomorrow.

"That the proof of your faith . . . may be found to result in praise and glory and honor at the revelation of Jesus Christ" (1 Pet. 1:7).
Last edited by dan123 on July 29th, 2003, 10:17 am, edited 1 time in total.
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Postby dwl on July 29th, 2003, 10:15 am

Well spotted Twyla - as you say, very similar story, very similar profile and the right timeline. Anyone fancy emailing her via Braintalk?
Last edited by dwl on July 29th, 2003, 11:25 am, edited 1 time in total.
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Postby Dale on July 29th, 2003, 10:43 am

What exactly are you trying to say? That Carolemarie lied to us here? I'm a trusting person & will normally take someone's word as being truthful. However, we're dealing with the internet here. That being said, I think we all have to be very suspect of anything we read/see on the internet - especially information of a medical nature. Sure, people could be posting half-truths here. Hey, maybe I'm not Canadian afterall - maybe I'm really an American (just joking Jenn!).

Bottom line, if Carolmarie has ALS, I'm very sorry for her & her family. If she doesn't have it, fantastic.

Like the webpage states: AboutBFS.com is an Online Community for people suffering from BFS - Benign Fasciculation Syndrome, and those who wish to know more about the illness. I'm here to learn more about BFS & to help others in anyway I can. I'm not here to validate someone's story.

Sincerely,

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Postby dan123 on July 29th, 2003, 11:22 am

Very true...Dale...I am saying that they sound very similar to each other...so If I was scare about her post I should be very non-scare about the braintalk one b/c of the similar sx...

If she does have ALS(which I hope and pray she does not) that still does not mean that we have it...but the fact that both story have similar sx should be encuraging to us that 2 different people have the same sx but not the same dx after months and numerous test. Then again it is the Internet

Good day to all :D
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Postby tlotoxl on July 29th, 2003, 12:22 pm

I believe with total certainty that it is our carolmarie -- there are too many coincidences to be otherwise (state, headaches, date of onset, date of barium swallow, results of barium swallow (not asking about what 'certain neurological conditions' were)) -- so I am very happy for her sake that her ALS diagnosis is not certain. I hope she finds a satisfying diagnosis, though, and gets some relief from her condition soon. It can't be any fun suffering from the symptoms she's suffering from and not having any sort of reliable prognosis.
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Postby 25 on July 29th, 2003, 3:12 pm

OMG, it must be her!!!!!! Look at HER PROFILE there and here! There are wayyyyyyyyyy too many coincidences!

I hope she doesn't have it, it's obvious she WAS NOT diagnosed w/ it! I am sorry, but this makes me really *beep*! Not that she wasn't diagnosed, but the fact that she never came back and told us! She said she has it! So many people here (including me) totally freaked after reading that post! I know I went into a total panic attack (had to take anti/anxiety stuff etc), just think how different it would have been for all of us had she come back and said........no, the dr says it's not als, it's stress..............

I am sorry if I am overreacting, but .........
And all the attacks on Arron????????????
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Huh?

Postby Jenn311 on July 29th, 2003, 4:58 pm

Too weird...

I think it is probably her, but we may never know the truth. I hope she doesn't have it, for her sake and our sanity...

So Dale, you aren't Canadian? Well, I have to confess that I am not a Sport's Illustrated swimsuit model, nor do I own any diamond mines in Brazil...since we are being honest now. J/K :wink:
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Postby Pole on July 30th, 2003, 2:09 am

I am sure it is not Carol. Few days ago I get a private message from her - she responded for my message.
That is her message:


Hi, Marcin. To answer your questions....I finally found a neuro who would listen to my symptoms and
not dismiss me as a hypochondriac. I have been twitching for 9 months and at the end of March, my
throat muscles felt paralyzed and I kept choking because of it. Ever since then, the left side of my
throat does not function and seems to get a little worse each day. I had also been waking up at night
with fasciculations in my diaphragm and since them, my breathing gets more difficult each day. That is
the reason for the morning headaches. I am not getting enough air at night and the carbon dioxide gives
me a headache. He ordered an MRI of my brain, clear to my tailbone (cost of $9,600). There is a
lesion at one of the brain ventricles which is typical of an ALS lesion when coordinated with other
clinical findings. The majority of ALS patients have normal MRI's. Other symptoms...stiffness of the !
feet which I've had for nearly a year and dismissed it as old age or tried to blame it on shoes. I have
atrophy around my left collarbone area which has increased in size over the last few months. (One
neuro tried to convince me that it was always there and I was just noticing it.) I am sorry that I scared
everyone. The fact is only 60% of ALS cases start with weakness. Twitching or fasciculations
throughout the entire body are a hallmark sign of ALS. The weakness or atrophy can appear much
later in the disease. I am still working but I don't know for how much longer. My throat feels as
thought it is closing in and before too much longer, I fear my speech will be affected. I saw 4
neurologists and 2 medical doctors over the last year who kept dismissing my symptoms as stress. I
am in the process of typing a journal of events and symptoms, the doctors I saw, and what they said.
My family has ! requested this. There will more than likely be numero! us malpractice suits filed.
Thanks for caring.
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Postby tlotoxl on July 30th, 2003, 2:24 am

wow, that's really bizarre if they are different people. perhaps the post on braintalk is in fact a prank? well, i hope carol's diagnosis is mistaken just the same or... well.. i hope.
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Postby dwl on July 30th, 2003, 2:30 am

I'm still a bit dubious. To say that only 60% of als presents with weakness is factually incorrect. Also, als is a disease of the peripheral nervous system, not the central nervous system, therefore one would not expect MRI brain abnormalities "typical of als". The "throat closing in" stuff is absolutely typical of globus hystericus. As yet there is no mention of an abnormal emg.
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Postby Pole on July 30th, 2003, 2:46 am

Changed my mind after reading Luvmycat's posts on braintalk. I think it is Carol. Her profiles and symptoms here and there are so similar!
And one more - on braintalk she said about MRI and one lesion in the brain exactly like in private message sent to me. On braintalk she claims that she was told that this lesion was typical for MS. In private message to me she claims that it is typical for ALS. Something is wrong here.

BTW. There is a new MRI technique which can be usefull in ALS diagnosis. This new MRI can show very early demage on UMN. There is some info about that on ALS braintalk forum.

regards
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Postby Nole on August 2nd, 2003, 8:21 am

I think it is a scam or someone who thinks they have als and now believes themself. I hope she doesnt have als, but she needs some help dealing with her hypochondria and stress. The posts are very similar and he quotes are untrue, "widespread twtiching is always a first sign of als" NO WAY! We may be dealing with a sick person but not from als! Live life and be happy!!
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Postby platch on February 20th, 2004, 12:55 pm

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Postby Arron on March 4th, 2004, 1:35 pm

Let's not start this scare all over again. It is a fact (Dale) that CarolMarie posted a lie when she said she was "diagnosed" with ALS. She later admitted (in writing, on this forum) that she hadn't actually been diagniosed with ALS at all, but she KNEW she had it. Well, that isn't exactly a real diagnois now, is it? How many of YOU "KNEW" you had ALS when you first started twitching? Yeah... got my point?

There are extreme cases and mild cases of BFS. Everyone is different. Some people take Ibuprofin and get relief from headaches and other's die of shock to their systems after taking it. Yes, that is true and that's why it is labeled on the side of ALL Ibuprofin boxes. Some people can eat peanute all day and other's die from allergic reactions. Again, everyone's body is different, and everyone reacts to things differently. Some more xtreme than other's.

I'm not saying CarolMarie does or doesn't have BFS or some other kind of NMD. All I am saying here is that she didn't have (and apparently even still to this date according to what she wrote privately to Ploe) a diagniosis of ALS, or any other NMD for that matter, as of yet.

Anyway, my point here is this; let's not start all over again, freaking out over someone's post on another site. We already went through that crap here and it was proved BY THE AUTHOR that the diagnosis was indeed "fabricated" and wasn't a DOCTOR's diagnosis.

There are people out there that will post things just to scare you and other's, just as there are people that swear that they had the winning lottery ticket and lost it, only to come-out and say a week later that it was a lie. Remeber that recently??

People like to post crap, and say crap that simply isn't true! How many bogus UFO pictures are out there?, or Loch Ness Monster photos that were "thought" or "believed" to be true, only to have the person that took the pictures come-out decades later and say it was as hoax. Hello??? Any similarities here??

No one on these forums really "knows" the other, and it is quite common for people to say things and do thinsg that just aren't true. Some people have mental problems goingh-on and you can;t detect that when they write because you can't decipher "charactar" in written words or see body movemenmts or gestures. Its different when you see some toothless tweaker that is all drugged-out say " I didn't do it", compared to a clean-cut, business man in a nice suit say the same thing. You can;t "see" charactar on some mesage board.

I'm not saying CarolMarie (or anyone on here) is a tweaker, or is all toothless and drugged-out. What I am saying here is that you don't KNOW her and you can't SEE her to understand or to help "judge" her character to help understand WHY someone would post things on ANY web site to scare other people, just as you can't understand why someone would take some bogus pictures of some idiot inside a stupid looking ape suit claiming it's Big Foot just becaue they have "photos" of it to "prove" it.

Maybe Big Foot does exist, that old movie clip of the female one, walking along the creek is pretty real looking to me, but when you can see the parting line between the obviously fake fur of the mask and the suit collar, and you can see that the foot prints are clearly flat and made out of plywood, it all tells a story of the "character" of the person making the claims... and it's all for attention, and it doesn't matter if it's negative or positive.
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