Carol Visited and Speaks

[Carolmarie]

Hi, Everyone. First of all, I want to apologize to all of you for causing such a panic about ALS. I visited and read some of the posts. Let me explain what I am going through and perhaps you will find it in your hearts to understand. My posts were not a scam and yes, it was me who posted on braintalk.org. Here goes.

I started twitching a year ago. Many of you are admitted hypochondriachs and there's nothing wrong with that and many of you have "fessed up" to being hand-wringers and worry-warts. Those traits are what make us all inividuals. I have the good fortune of taking after my mom but alas, I inherited her vericose veins--so you see, we are all different. I've never been a worrier or one who gets "stressed out." Sure, I have stressful moments at work, for instance, but they pass and I move on. I was never one to run off to the doctor unless there is something seriously wrong. I rarely miss work (have over 250+ leave days accrued). I just wanted to illustrate that I know with 100% certainty that none of my symptoms are stress-related.

I have been to four neurologists. Whatever makes them think they can presume to make a psychological assesment of someone in 5 minutes time is beyond me. I have gotten the "stress lectures" and "you are suffering from somatization" talks from everyone of them. I'm sure many of you have experienced this. WE are the ones living inside our bodies and it is up to the doctors to take what we as patients tell them at face value instead of trying to read something else into it--I find this particularly true of women. If I go to the doctor and say I've been twitching or I am having trouble swallowing, I don't want to be questioned like a defense witness by a hungry prosecutor. This is precisely what happened on my last neuro visit. First, I had made some notes to take with me. He saw my notes and yelled at the top of his lungs, "Put those notes away! You don't need those!" I wanted to start from the beginning when I began having the headaches you all read about in my story. He cut me off and said, "No, I want to know what's bothering you RIGHT AT THIS MOMENT." Of course, I told him about the twitching. To make a long story short, he wouldn't let me start at the very beginning so I could illustrate a year-long progression of what I know has culminated into bulbar onset ALS.

As a result of his rude and pompous office manner, I could only fit in here and there some of my symptoms--so, in his report it says something to the effect. . . ."transient symptoms that come and go ....benign....yaddayaddayadda." As far as his psycho-analysis of me, it consisted of "How about your daddy. Was your daddy a good boy? Was your daddy a good boy?" He repeated this over and over until he had me in tears. My wonderful mother and father were sitting in the waiting room worrying about me and this kook of a doctor insinuates that I was sexually abused?! After he saw that he had me in tears, he had the nerve to say, "Those tears tell me all I need to know." He also asked about my job, my family and my financial status. I told him I had a great job and a wonderful family. I had a "pollyanna" upbringing and came from a family where no one raised his/her voice to each other and respected each other. It was wonderful! I said finances were tight for awhile until we got my husband's disability straightened out through his insurance carrier. Well, get this: He said: "I hate my job. I have patients I hate. I have family problems and I have financial problems." I' m thinking, what kind of a nut is this guy? I can just imagine what he wrote in his notes about me and that leads to another problem. When you go to yet another doctor, those notes go with you and you are doomed before the next doctor ever sees you.

I want back to my local neuro who referred me to that quack to plead my case one more time and he said he knew Dr. so and so for 25 years and he respects his diagnosis. We talked briefly, he would not believe me about my swallowing and stood up and looked at the clock so he could get me out of his office.

Anyhow, the swallowing problem is real and now it has affected my jaw muscles. They are so siezed up that my bite is off and the backs of my 2 front teeth are eroding from the bottom teeth hitting them when I chew. It had also moved into my upper chest awhile back and also my diaphragm. Sometimes, breathing is very difficult. That's the order in which it came and after the muscles sieze up, they begin to relax somewhat and that's when the deterioration begins. So far my limbs are ok and the EMGs were normal in the limbs. I did some real esearch on ALS. I don't mean surfing the internet--I mean real research at a university library. (BFSers...you won't have to "wonder" or "question" yourself if you think you have a swallowing problem. Believe me, you will know it if you do.)

That brings me to here. On my final post, I was looking for support and clinging to this site for all it's worth. Someone, I forget who wrote something to the effect that "yes, it's probably somatization." I got so angry and hurt because after hearing it from one doctor after another and then from one of the BFSers who doesn't even know me I just lost it and now you know the rest of the story. That is why I said I had been diagnosed. I really haven't been but I know I have it. It's just that no one will believe me. I'm also a little jealous that I can't belong to your group anymore. Eveyrone here is so wonderful. I wish I could just go back to having BFS. You don't know how lucky you all are.

This is my private hell: As you may have read in my posts, my husband had a nervous breakdown in December so I keep much of this from him. If you know anything at all about medicine, here's what he's on so it will give you some idea of his condition and why I can't lean on him. He's on 150 mg. Effexor per day; .5 Xanax 3 times per day; 30 mg. Remeron per day and 75 mg of Seroquel per day. He's doing ok though now. I haven't told my co-workers because when all this first started I thought it was MS. Well, that made its way through the office and no one came near me. No one joked. Nothing. It was as if I had leprosy. I am keeping my dirty little secret. The only ones I have told are my parents and my best girl friend. Yes, I cry. I cry for 30 miles on the way home from work each day into some of the hundreds of Dairy Queen napkins stuffed in the glove box. I've stopped watching my weight and cholestorol. Who cares? Does it really matter? Is one more Dairy Queen cookie dough blizzard in the grand scheme of things going to make any difference? Does it hurt me to look at my cat and think that more than likely he is going to outlive me? Will I get to try all the new recipes in the new cookbook I ordered from QVC? I took out a long-term care policy on myself but it doesn't kick in until 12/1. I am praying I can make it til then without medical intervention. I have taken out $250,000 in life insurance so I can leave my husband with some security. When he says something like "next year we'll put new carpet in the kitchen" or "when my pick-up is paid off, we'll get a new car", I could just cry. I am driving a Subaru with 268,000 miles on it and it will be the last new car I ever see in my lifetime. I've come to realize that and a lot of other things. Kenny Chesney fans, have you ever listened to his song "A Lot of Things Different"? Do so sometime. It'll really make you stop and take stock of your life and priorities. If 9/11 didn't make you stop sweating the small stuff, having to deal with a fatal illness will, believe me.

We drove to Altoona PA today and went shopping and ate at TGIFriday's. I am savouring every moment of every day. My husband will never be out in the work-a-day world as a tanker driver or truck driver again due to his condition and medication so we went out on a limb and took out a second mortgage on the house. (His Soc Sec Disability was denied twice so we got an attorney but it could take years to appeal and win--if ever.) He is a gifted carpenter so he is building a 32' x 40' workshop and we are filling it with $10,000 worth of Grizzly power tools. He is going to make furniture, cabinets, etc. Our bills total more than my income so he has to do something to generate income for when his disability insurance runs out through his employer.

I hope you all understand this. I posted on braintalk.org hoping that the people who know first-hand about ALS would say something like you absolutely do not have ALS now get out of our forum!

Again, my apologies. I hope you can for give me. With Humble Thanks.

Carolmarie

[dwl]

Carolmarie,

First of all can I say I'm glad you haven't been officially diagnosed with als. Your post frightened a lot of people on this forum, but I now think that in the longer term it has actually helped us as a group. I now know to be quite questioning of anything I read on the web. This is a good thing IMHO.

A couple of months after your post, someone posted a message purporting to have als with a 10 year history of twitching and 6-7 normal emg's. We all pretty much decided that this was very suspect and everyone pulled together and supported each other.

I think you still belong here on this forum and would welcome it if you stayed around. I know you're convinced you have als and it was wrong of your Drs not to listen to your concerns. Bulbar onset comes on rapidly and progresses very quickly. You don't have bulbar onset als but I know you won't believe this. It is quite possible to be completely convinced about something and also to be entirely wrong. I know I have been about my symptoms and many other things besides. I previously posted a link to a paper which showed that one third of patients who see a neuro have medically unexplained symptoms. These people are not imagining or fabricating their symptoms - they are real symptoms. It's just that they are not caused by any known disease process. In the same way, your symptoms are real but are not caused by als. Who knows what is causing them, but it sure ain't als.

Maybe you could make a deal with yourself - you could agree that say, in 6 months time if you haven't had an official diagnosis of als then you accept this. Then you would only have 6 months of worry instead of the rest of your life.

With best wishes,

David

PS Jenn, do you like my new icon? - I pinched the idea from you!

[Jenn311]

Cool icon David! I love it....is that you?

Carole....

I agree with David. I knew someone with Bulbur onset ALS and she went down hill fast...in just a few months she couldn't really talk and had to hold a tissue to her mouth full time so as not to drool all over herself. She also couldn't swallow....and had to have a feeding tube put in. I don't think you have had to have a feeding tube put in yet, have you? If you are going to TGIFridays, I doubt you are having real weakness of the throat muscles. She also couldn't talk and could hardly lift her hands and she couldn't walk. She lied in bed all day and watched TV. All this happened in a very short time.

I think you need psychological help. I am not saying that to be mean, but because I know what convincing yourself you are dying feels like. I think many of us here can relate to that feeling of doom. HOwever, most of us have accepted our conditions as benign....you should too. Difficulty sallowing can be due to stress...I have had the same problem from time to time over the years. For many years when I was young I was so stressed out that if I didn't take a big drink of water every time I swallowed I would choke. I was bone thin because I didn't want to swallow anything. A friend of mine who was working on her PhD in psych told me that you see that phenomenon a lot in people who were sexually abused as children, so I can see why your doctor would insinuate that....though he may not have done it in the most tactful way.

I really hope you get the help you need because being convinced you are dying is no way to live. Take David's advice and if in 6 months, you have no progression of symptoms, throw a big party and forget about your problems. (Though I think you could probably do that now with your lack of progression!)

Best of luck....

Jen

[John]

I have been warned not to read your post ,but being absolutly convinved that what I have is BENIGN I new it would'nt bother me at all. I do feel for you, and what you have put yourself through I have had esophageal spasms since I was 18 ,and I am now 39. They are very painfull and can bring me to my knees in pain , but I can feel and search while I am swallowing and can find the one particular muscle that is in spasm ,and can relieve it by simple preasure . I even went so far as to go to my Dr. while it was in spasm to find out anything I could . That it all it iwas just spasms ,I get them more and more frequently ,but that is all they are .When I first started twitching close to a ear ago now ,thought of that and wondered if it was related ,it was'nt .I did'nt even tell my Neuro about it .
Every one has all sorts of little things that are just a little different than every one else ,but that doesn't mean that they are all related to one particular disorder or desease . I personally think that you have had an information overload ,and you are a four ulcer woman on one ulcer pay. Take Jen's advice and seek some help ,there is nothing to fear or be ashamed of ,everyone needs some help sometimes,and you obviously do.
I am not trying to be mean by telling you this ,the reason I started posting here is to help ease some fears along with everyone else .

Good luck to you ,and I wiil keep you in my prayers
John

[fastpage]

As I have been gone for a few month's, I went back and read carolmaries' post which caused such a furor. It is an example of what can happen when too much credence is placed on one internet message. This board is filled with great, helpful, credible people. It also (like any message board) has it's share of compulsive, needy and self-important posters. The latter had been dominating the board last spring which is why I quit visiting. Those people who had been so helpful to me (especially Aaron and a couple of others) had kind of disappeared from the board.

Some folks need to stop and think about either the harm they are causing, or whether they are adding something useful to conversation before they hit the "submit" button. You don't have to reply to every post that shows up on the board unless you have something constructive to say. You don't have to believe every post that shows up on the board unless there is a valid reason to accept it's veracity. Some of you who have 300 or 400 posts in a few months need to decide if you are really helping or hindering the flow of useful information here.

It's wonderful to come here when you are really upset or really have pertinent comments to help others. It's counterproductive to complain or seek pity all the time. The level of compulsive behavior by some posters should put everyone on notice that you can't believe everything you read.

Now, I suppose I will get the usual lecture from the "sensitivity" crowd that I am being unkind. Free discourse is more valuable than worrying every minute about hurting someone's feelings. A little less "sensitivity" and a little more pragmatism might be useful in the future. Thanks again to Aaron and the others who helped me so much when I first came on.

That being said, I wish Carolmarie all the best. I think maybe there is as much fault for this misunderstanding in the behavior of the other members as there is with her for fibbing. --Graig

[kim]

Carol,

It sounds to me as though you do not have bulbar ALS. My grandmother had it, and she deteriorated very quickly. She was drooling and couldn't swallow at all within a few weeks. She was literally pulling mucus from her throat in order not to choke to death.

Although I am sure you have something wrong, It is not ALS.

Besides, if you were able to get a life insurance policy, you need to have a physical and clean bill of health to get one. No insurance company in the world would insure an ALS patient!

Listen to the others. Give yourself a break from the fear. Sometimes there are no clear answers where our health is concerned. We just need to accept what is so.

Kim

[michelle2]

Carol,
Obviously you've had a lot of stress in your life and that is tough. Still, if you did not believe any of the 4 neuros, who told you what you have is benign, why would you think anyone on this site could reassure you?

Either you are depressed and obsessing or you are trully desperate. Even if you had ALS, which you don't, you could and probably would be depressed. There is no shame in depression or anxiety. Seek treatment. You can continue to have your neurologic work up at the same time.

You owe Aaron an apology.

You should not post on this site anymore until you have seen a psychiatrist.

[Arron]

I just have to chime-in here. So I guess the ALS diagnosis was from a quack doctor that just wouldn't listen to symptoms and test results and took it upon himself to make the bogus diagnosis because he was financially burdened and had family problems? Maybe you should file a suit against him!

Look, here's the bottom line. The original thread where it was "announced" that there was an ALS diagnosis was obvioualy wrong and very misleading to say the least. It basically started world war III among poster's on this web site and caused a few to leave and never come back, and over what? Nothing more than MIS_INFORMATION and a total MIS-DIAGNOSIS.

I was slammed for saying the word "fact", when saying it's a "fact" that not one person has gone on to develop ALS from BFS, and it's a "fact" that with a clean EMG and no REAL weakness or loss of muscle control, you do NOT have ALS, especially after having symptoms for any length of time. But even after the fact.. oh *beep*.. there's that word again... the "overwhelming information"..... still points in the same direction as I originally said, even during AND after the post about the (now incorrect)ALS diagnosis.

A lot of people were in sheer panic over this misleading and obviously inappropriate post, and a lot of people were hurt in more ways than one. So from now on, let's keep facts, facts and not post crap with no hard evidence to back it up. I really don't care what anyone wants to call them... "the information points to", "in supoport of", 6.7%, (which has been shown to now be 3%), which is STILL misleading information when you look at the FACTS, blah, blah, blah...

So, before anyone starts slamming anyone else on here, they'd better have THEIR FACTS straight from now on. I was personally attacked for "misleading people into "false hope" and making light of twitching.
Oh yeah?? Well all you ney-sayer's out there? NOW show me someone that can prove otherwise!! Yes I'm *beep*. Too bad. I had to endue and defend my self over and over again, and listen to other's tell me I don't know what I am talking about, and that I'm a power freak and a pompus hard-ass. But I don't see any hard evidence saying I'm wrong now.

Carol, I'm glad you don't have ALS. Everyone was hoping the information / diagnosis was wrong, and it obviously was. None of your information or symptoms or anything sounded like ALS to me or anyone else, UNTIL we heard that you had real weakness, and even then, we were a little skeptical, and rightfully so.

Do I have a right to be mad? Of course. Am I mad at you Carol? Not really. I didn't really like the "so much for Arron's..." or whatever you said at the end of your "I have ALS" post. Am I mad at people that slammed me and who wrote me nasty e-mails and private messages? Yes. Am I allowed to vent? Sure I am. I took a LOT of flack for that misdiagnosis, and people treated ME like "I" was the doctor that made the misdiagnosis. I'm not a doctor and I have never claimed to be one!

People come here for comfort and support. I do my best to give them supportive and FACTUAL information to help calm their nerves so they can get back to living. It seems there's a lot of people out there though that have nothing more on their agenda's than to prove me wrong, and you know what? It isn't ME they are trying to prove wrong. "I" didn't make this stuff up! It's the COLLECTIVE information from ALL of the sources that I, and many other's search through that they are trying to prove wrong, and they just aren't going to be able to do that.

Maybe it's time to start thinking positive about things around here and be more supportive instead slamming people for trying to do something good for other's. I certainly have better things to do than to stay around here and get slammed by a few idiots that obviosly haven't the intelligence to find their way out of a paper bag! Actually, I'm glad a few of those morons left this site after that nasty thread a couple of months ago. They can stay at the brainlesstalk.org web site then. They didn't bring anything positive to this web site anyway, so who cares? You can't please everyone! If someone can't be supportive, then maybe they should just leave this site and go elsewhere.

I understand that this post isn't "supportive" either, and I'm sure I'll get ridiculed for it too, but sometimes you need to learn by faults and mistakes, and improve things by seeing your mistakes and not making them again. So from now on, let's try to be more supportive and less apt to "attack" someone for being supportive, and when we think we have a diagniosis as serious as Carol's, let's not just post and leave without giving the facts and circumstantial evidence that warrants the diagnosis in the first place, so we don't end-up with WW-III on here again..

[Carolmarie]

Hi, Aaron. Read your post and agree. Sorry for all the flack I caused. I can't apologize enough. Remove the offensive posts so everything can get back to normal. I think that would be the best thing.

As many of you have experienced, when you pay a doctor good money and he doesn't believe your symptoms...well, it's very, very irritating to say the least. You know the feelin'...they look at you like you're nuts. Someone suggested I should see a psychiatrist. My husband is seeing a psychiatrist every 2-4 weeks--has been since January. Since my health and well-being affect him (he's doing very well, BTW), the doctor needs to know what kind of person I am so I naturally go with him to each visit. The dr. talks to me more than he talks to my husband, so after 9 months, the guy knows me pretty well. I told the psychiatrist about my neuro problems and even showed him the wasting away around my left clavical and told him that there is a muscle in the lower left part of my throat that doesn't function. The clavicle is horrible looking and is affecting my shoulder joint! There are 3 sinkholes below my collarbone. I told him that the last neuro I saw told me it had been there all my life and I am just now noticing it and there is no connection between that and the throat problem! I also told him some of the other "wierd" things he said to me. He said, and this is a quote: "Sounds like you have a lawsuit on your hands."

I took out addt'l life and mortgage insurance and long-term care insurance because I am not "diagnosable" YET which I think is very prudent so as far as they're concerned, I have a clean bill of health. I have to just make it through the waiting periods w/o diagnosis of anything so that's why there will be no more doctors. So far, everything in my medical files indicates a "benign" condition. The left side of my throat is getting worse so I have to be careful when I eat because I choke. As I said in my other post... my jaw muscles are so siezed up that my bite is off and my bottom teeth are eroding the backs of my front teeth when I eat so I am eating things like soup with crackers, etc. My jaw teeth do not even meet when I close my mouth. Have lost some weight. I just took a muscle relaxer, Xanax and 4 Advil about an hour and a half ago and they had absolutely no effect on the jaw muscles. Just wanted to clear up a few things. I'm not depressed or crazy. If and when I do get a diagnosis of something, I'll let you all know. Sincerely, Carol.

[Nole]

Carole-

Your throat problems could be a few things, my aunt is very sick and has soemof the same symptoms you have, she has parvo virus and epstein barre...other than the viruses in her system which were VERY hard to diagnose she has a clean bill of health also. But he thraot closes off to the point she stops breathing, she cant swallow or talk at times, and we have been to the ER and in the hospital plenty of times. There are days when she cant walk, eat , or use certain muscles, but it all stems from these viruses!! Hard to believe but true, we have excepted this diagnosis and are happy it is not going to kill, life altering- YES!! But not life threatning if hs etakes proper care of herself. My point here is that you could very well have a horrible virus of some sort and that is why your tests come back fine and they say benign, she has had the same things said to her for months...but I doubt you have ALS, you would progress very quickly and I think at least one of the doctors would have picked up on the symptoms of ALs by now...I thought my aint possibly had ALS also, her symptoms were mimicing some ALS symptoms but I can rest assure knowing she does not have ALS...Go see specialists, have some bloodwork done, you need to put yourself at ease and realize it is highly unlikely you have ALS...Sorry for rambling on, best wishes to ya!

[Arron]

Carol, all of our hearts go out to you. You obviously have "something" going-on, be it benign or not... something is causing this stuff to happen to you.

Have you looked up TMJ for your jaw problems? It can cause all kinds of things, misalignment, soreness, worn teeth and even eating disorders because it's so hard to eat.

Maybe you have a pincherd nerve somewhere in your neck which is causing certain mouth muscles to go numb or lock-up? I mean, there are all kinds of things it could be without having to be something really nasty.

I am sorry if I came across a bit harsh in my previous post. I think we all learned something from what happened a few months back. I can only imagine what horror you must have been going through when the doctor told you you had ALS. Please understand, all that went-on with the fighting back and forth was not your fault. It was the fault of the people who posted after your announcement and who were causing fights and bitterness. That's why I wasn't really mad at you. I was one of the people that should have just kept my moputh shut, but I'm not that kind of person. When people "call" me on something, my nature is to stand my ground and prove them wrong (when I know I'm right). So I too was part of the overall problem.

I spoke about my old neighbor in other threads where he had a pinched berve in his spine (which he never felt or knoew about) and his arm shribbled-up into nothing but a skelital skin and bone. he finally found out what was wrong and had it fixed and his arm looks totally normal now. What I am getting at is maybe you have something like that going-on in your clavical, AND possibly TMJ or something as a separete thing in your neck and jaw? It's not impossible to have a coincidence with two separate things going-on that you "think" are related.

Anyway, sorry for rambling. We ALL feel for you and we are here to help and support you any way we can, OK? hang in there girl

[Flash19]

To bring on stiff throat, problems swallowing, breathing difficulties - I know because I have created all those very real symptoms in the past for a number of immaginary illnesses including my current favourite which is throat cancer (the hypochondriac version as opposed to the serious one).

You say that you aren't stressed, aren't a hypochndriac, and never worry. Well that changed the first day you twitched, and found out about ALS. This in turn has caused the anxiety that has produced all subsequent symptoms and made your husband sick with worry.

Snap out of it.

Doh!


Flash