tiredofdoctors

My friend's mom was getting aggravated after months of trying....A square of toilet paper floating in the toilet inspired her to make going in the potty like target practice - aim for the square. He was trained in a week.

It's amazing what works sometimes.

They actually MAKE floating targets for boys!! Seriously. They are bust-a-gut funny, but I've heard they work . . . . .

Lisa ---

Oh, sweetie, I am so sorry to hear about this. I was just there a few weeks ago, and it's AWFUL. Just remember, regardless of her physical state, she can still hear you . . . and she can still process how much you love her. When you talk with her, and you tell her that you love her, she hears you and she knows.

I'm so sorry that you're having to go through this. I am praying that you will have strength, and that your friend will have a peaceful, loving, "good" death . . . . .

((((((((((hugs)))))))))) to you,

Love,

Lynne

Luckily, this was the second neurologist that I went to -- to placate my sister!! It was when she was convinced that I had "conversion disorder". That is a concept that was developed by Freud, and is considered to be a rediculous phenomenon by mental healthcare professionals. My sister is an insurance adjuster -- thought maybe because it is in her "book" that I had it!! I went to this guy because she told me that "he is the best" (I'd hate to see the worst!!).

I told my REAL neurologist what I had done. He is a great guy . . . he just chuckled and said, "Well, you know, some times those things just need to be done." He knows about this guy's ego, evidently. My primary neurologist is the one that is working in concert with the geneticist, the neuro-opthmalogist, the immunologist and the rheumatologist. I'm not concerned because I know that I have him. He's REALLY busy, though, and getting an appointment takes a minimum of three months -- sometimes more.

I told him that this guy had wanted to send me to a "movement disorders specialist". The hysterically funny thing??? My neurologist STARTED the movement disorders clinic at the University of Louisville . . . . when we had NOTHING!!! I studied under him when I was in PT school. I told him about the referral, and I told him how outraged I was. He just laughed. He knows that I can get "feisty", so I'm sure that it didn't surprise him that I said what I did to the other guy. He also lets me "contest" what he says, ask as many questions as I want -- and he follows up on them. So, if I can be content with seeing him every 9 months or so, it will be okay. I will probably tell him that I want more follow-up, and I think he'll try to accommodate that. Like I said, he sees SO many people. They will drive 4 or 5 hours to see him and think nothing of it. He's also a good guy.

I just thought it was funny that a doctor "fired" me . . . . like I said, I PAY HIM. Doesn't that make me the "employer"?????

I think I will send him a registered letter firing him . . . and Susie Q -- I'm going to use your quote!! He'll probably put that at the TOP of my chart, and mark me as a psycho patient!

How could I EVER stir up trouble . . . . . ?????

It was bound to happen eventually, but I got fired by a doctor -- my neurologist! While I want to say that it was my own "fault", I'm not too sure that's the case. I CERTAINLY think I was provoked!

I went in for my every three month test your reflexes -- they're getting worse -- test your muscle strength -- it's fine -- "I don't know why that's happening" visit. I had a list of questions which I wanted answered this time! He has blown off my questions for the last three visits, and I needed to have them addressed. I started to ask them, and he said, "Let's get this out of the way first", meaning the reflexes, etc. That way, he could start walking out the door before we get to my questions. That happens EVERY time.

So, he finishes up, tries to leave and I said, "Wait. I have these questions." I asked him about doing antigliadin antibody bloodwork, since I haven't had it done in over a year. He tells me that "everything he's read" -- articles I gave him -- indicate that I'll always have elevated antigliadin antibodies, and testing really doesn't tell much. HOW ABOUT IF I'M ACCIDENTALLY INGESTING GLUTEN, SINCE I DON'T HAVE GI SYMPTOMS????????? Also, everything he has read -- they all recommend testing at least every six months. Then, I ask about other things, and EVERYTHING I said, he shot me down! I asked him about what the geneticist had sent him. He said that he hadn't received anything. I WAS ON THE PHONE WITH THE GENETIC COUNSELOR WHEN SHE FAXED IT TO HIM FOUR WEEKS BEFORE MY APPOINTMENT!

Then, he tossed the straw that broke the camel's back: He asks me what was on my neuropsychological evaluation. Obviously he didn't know that it's a FUNCTIONAL evaluation that is designed to target areas of the brain which aren't working properly. So, I told him that it said that I had Occulomotor Apraxia and that my MMPI (Minnesota Multiphasic Personality Inventory) was well within normal limits, with the exception that I did have some increased focus on a chronic illness. HELLO??????? I then made the statement that probably started me on the downhill slide . . . . I told him that the test was given two years ago, and my focus on a chronic illness is virtually NONE because I couldn't give a rat's a** if I ever saw "any of you doctors" again. As I was leaving I told his secretary that he saw my lips move, but didn't hear a word I said. I called the next day and told them that, since NOTHING was accomplished during the visit, I didn't want my insurance nor myself billed for it. I made the comment that my husband said he must be hitting the "senior slide" . . . when physicians in their mid-late 50's are looking toward retirement and really don't want to take on challenging patients. They just want the ones that are the "same old same old" so that they don't have to do any research with regard to their condition.

A week later, I got a notice that, while I was at another doctor's appointment, I received a registered letter from them!!!!!!!!! Still haven't picked it up. I figure it this way: I pay HIM. That means I get to fire HIM, not vice-versa!

When I called my friend who is my former professor, she cheered! She said, "WAY TO GO!!!!! Spoken only like Lynne Ellingsworth-Wagner could!!!!! I'm so proud of you!!!!!" Given that I have MUCHO respect for this lady, I'm thinking I'm not too unhappy about this whole situation . . . . .

I bought my kids regular underwear -- but the fun stuff: Papa Smurf for Brandon, Minnie Mouse for Ashley. My caveat to them: "You don't want to pee-pee on . . . . . . " Plus, wet underwear are NOT comfortable. They didn't like having them wet!

The other thing that I did -- we bought an M & M's machine, and put it on a shelf in the bathroom. Each time they went to the bathroom without having an accident, (after they washed their hands, of course) they got to get M & M's out of the machine. Talk about incentive! My kids were STRAINING to go to the bathroom! My aunt was asking about tips for my cousin's little boy, he was 3 1/2 at the time -- they were getting desperate. The M & M's machine worked for them, too.

I agree about the ready moment. I have a fantastic article written by Eda LeShan more than 25 years ago that addresses that very thing. I was lucky -- both of mine were ready and potty-trained (or at least they trained me) by age 2.

It sounds WONDERFUL!!!! I hope you're having such a good time. Glad that food hasn't been an issue so far. Pretty amazing that they use less flour in those countries as filler than the US -- bet they have a lot less Celiac, too!!

Keep us posted -- I am so happy for you! Take care . . . . .

Love,

Lynne

The hardest thing to learn in life is which bridge to cross and which to burn.

Sometimes the brightest light comes from a burning bridge.

Lisa -- Thanks for GREAT advice! I'm going to use that . . . . .

Graduation from high school was hard for me with both of mine. My son is my OLDEST, my daughter is my YOUNGEST. I bawled my eyes out. Of course, I cried at the onset of Pre-school, Kindergarten, Middle School, High School . . . . . and when my daughter got married last year -- OH MY!!

You start to get used to it. It takes quite a while, I think. I still MISS my kids. I see my son every Friday, and when I don't have Friday appointments, I really miss him. He has this really quirky sense of humor, and he "gets it" when I say things off-handedly. He calls me about every other day, though, just to tell me the joke of the day. My daughter, on the other hand, is so busy with school, working, husband and trying to stay well that she has her hands full. Not to mention she still has the mother/daughter thing going on, I think. Oh well . . . . . . . .

I've jinxed both my kids and put the official "hex" on them that they will both have TWO KIDS just like them!!!!! They'll be pretty lucky parents . . . . . .

Good luck on the summer and the send-off to college. I'll be thinking about you. May cry a little with you, too. Take care.

You know you're having a bad day when your dog has the big D, you are talking on the phone to Metta when you discover it, you wash her -- twice, because she has it while you're washing her, then the mailman comes and you answer the door in your husband's wet, poopy Sponge-Bob Square Pants pajama bottoms and a T-shirt!!!

Karen -- gotta love Rhiannon!!!!! You don't need wrinkle cream anyway!

I loved the Panasonic set we had at the office -- it was great. We have a vtech that I bought about 8 months ago -- with the three handsets -- and two out of the three already have batteries that have burned out. We're actually good "battery people", too Seriously, we do all the right things -- even though with the NiMH batteries they aren't supposed to have memory problems. Who knows . . . if 100 people buy them and ONE is going to go sour -- guess who it will be???!!!

Rachel -- I'm so sorry I missed your birthday. I hope it was a GREAT one!!

(((((((hugs)))))))

Lynne

I have to take a bunch of medicine, along with massive amounts of vitamins (B1, B2, B6, CoQ10 twice a day; multi & B12 injection once a day). It gets really hard to balance them out. I take my synthroid first thing when I get up. I keep a bottle of water on my nightstand and the synthroid is the only thing I take then -- because I figure if you have to wait 1 hour to eat, they probably don't want you taking a bunch of vitamins to vie for absorption.

After that, I just keep a Rubbermaid box containing my medication and vitamins. I'm fairly good about remembering them then. The other thing you might want to consider -- they actually make pill boxes (I had one, but wasn't big enough) that you can set as alarms. Also, there are watches made (you can find them on ebay) that are for ADHD, Autism that have multiple alarms (up to 12, I think) that you can set. If nothing else, program your cell phone or PDA for reminders!

I think trying to remember vitamins is hard! It doesn't strike me as MEDICINE -- although, in some cases it definitely IS. I think everyone has had really good ideas -- just thought I'd throw some that have worked for me in the mix!!

Well, it's filling up again......and we are seeing spats all over the place from the foum to The View!!

Anyone notice...........is it celiac related??????? Remind you of anyone????????(to quote my favorite late night host Craig Ferguson)

Ah well.........it'll be over in 8 days.....

I'm telling you -- it's getting close. People are going nutso left and right. It's only getting worse as it gets closer to the blue moon.

As far back as 1968 there are published articles with regard to Gluten Ataxia. The medical community dismissed this as rediculous. Six years ago, Dr. Hadjivassiliou began taking up where they left off using more state of the art technology. Again, he was written off as being rediculous. Last year, FIVE YEARS AFTER HIS INITIAL STUDY, when he proved conclusively with MRS -- Magnetic Resonance Spectroscopy -- that there is, indeed cerebellar damage in patients who have antigliadin antibodies and are non-symptomatic for Celiac -- he has finally been taken seriously. And who benefits? Peter Greene, who write "Celiac: The Hidden Epidemic"!!!!! He is being heralded as a genius and the foremost authority on Celiac, when he is actually just collecting the various studies which have been done for years! Not that I'm not grateful to him for doing that -- he is actually being taken seriously by the medical community.

I agree with Debbie as far as the internet is concerned -- these journals have always been available at the library. It just took a VERY long time to find what you needed, and you didn't have much to go on. Physicians DID shroud everything in mystery -- it further enhanced their status and their egos.

I think for so long, it was easier for physicians to claim that "it was all in our heads", call us psychiatric patients, give us the diagnosis of "conversion disorder" (I HATE that one) and treat us as though we were either hystrionic or delusional rather than actually delve into the cause of these symptoms. It was just the easy way out. A lot of physicians receive the journals that they do because they are affiliated with a particular association. I know a WHOLE LOT of them who don't ever pick up the journal -- just file it nicely on their shelves, so that it looks as though they have a whole reference library at their disposal. Actually, I have gone to those physicians -- but don't anymore.

I'm hoping, as Neurological Celiac becomes more widely accepted as a diagnosis, that physicians will educate themselves as to the signs and symptoms of this disease. Until then, it's up to us -- the patients -- to take in copies of the articles, hand them to the doctor, and make them read AT LEAST the title of the journal article while we're in there. We have to be our best advocate right now.

Oh my gosh Peter, if you Google my old name, or my real name you will come up with a porn star and quite the busy girl she was in the 70's and 80's......This would not be me.

Uhmmmmmmmm. . . . . . .. . . . . . . you are the right age. Are you sure you have told us everything about "what you do"?????!!!!!

I am VERY sorry you were diagnosed with ALS. Do you have any family members who have also had this disease? It is absolutely genetic. I would also ask to be re-tested.

I have had cerebellar damage (fairly extensive) from Celiac. In fact, I am a "Neurological Celiac", or sometimes labeled a "silent Celiac" because the ONLY indication that I had with regard to Celiac disease was that I had high levels of Antigliadin antibodies. Unfortunately, once they are that high, the chance that they have begun to destroy the Perkinje cells in the cerebellum is already there. It just depends upon whether your body mistakes a protein found on those cells for gliadin.

Did a neurologist diagnose you with ALS? Did that person perform an extensive neurological evaluation, as well as blood tests? Did he / she take a THOROUGH history, including a "family tree" overview asking whether there are people on either side of your family who have had ALS? If NOT, I would encourage you to seek a highly qualified neurologist in your area. If so, again, I would ask to be re-tested.

Please keep us posted as to the continued medical diagnosis and testing. Also, take care of you.

((((((((((Hugs))))))))))

Lynne

LMAO! I cracked Lynne up on the phone today. I was talking to her when Connor came up to me with his brand new Teenage Mutant Ninja Turtles sandals on, only he didn't take is socks off to put them on! I said "Connor, get the socks off now, you are not Mr. Florida!" Lynne busted a gut laughing!

OMG -- When I heard Karen say that to Connor, I could not control my laughter! "Mr. Florida"!! I told her that it was no wonder Canucks have such a bad image of the South!!!!!!!!!

That was one of the funniest things I've heard this year! Plus, if you put it in the context of how our phone conversations go, it makes it even funnier!!!!!

Mine is pretty self-explanatory! When I joined, I had seen SO many physicians. Not much has changed, I guess. With the exception that I finally gave one of neurologists a piece of my mind. Felt great. I received a notification of a certified letter from them shortly after that. I figure he's trying to "fire" me, so I didn't pick it up. If I pay him to take care of me, then I'm going to fire him. Especially since he botched a diagnosis recently.

After our Las Vegas adventure, Metta began calling me "Wheelie" . . . . . for a number of reasons! Was going to change my name then, but then had to see more physicians. Still tired of doctors!

Happy Birthday Nikki!!

Hope you have a fantastic time -- and hope you celebrate all weekend.

Love & Hugs,

Lynne

I always refer to Allo as my third son! But he dosen't listen any better than the others!

Patti: My little Destiny and my protector Lucky are the same way. Destiny gives me this look that says, "Are you talking to ME????"

Susie -- I'm so glad everything is okay. Destiny had a stroke YEARS ago when she went on a hunger strike. I was feeding her table food, and the vet said to switch to dog food. She turned her nose up to it for days . . . . . I was told that, when she got hungry enough, she would eat it. WRONG. She continued not to eat it, and her liver enzymes elevated to the point that she had a stroke. The vet said that it was because of her hunger strike. That picture of her that I had as my avatar with her little tongue hanging out??? That was the result of the stroke. Talk about one stubbon teacup. Must take after me!!!!!

My hubby is a CTO/software engineer. I get lots of geek-speak around here and I've learned so much from him I can almost give it back!

Beverly, you are SOOOOOOOO intelligent. Get real. You can banter with the best of them. Your husband has a VERY worthy opponent when it comes to verbal give and take!!

xoxoxoxoxo

Lynne

Hi Lins -- Welcome to the board! We were all in the same boat you are in at one time. It's confusing (to say the least), very frustrating and sometimes pretty scary. You have found the BEST place to find information and the most kind, caring people you will ever meet. Seriously. I started on the board two years ago, decided to go gluten-free two and a half months later (some people have really hard heads!) and don't know what I would have done had it not been for SEVERAL members on this board.

Whoever posted that Richard would be able to tell you more about (I can't remember what it was), they are right -- he is amazingly intelligent, but is able to put it in to a very understandable form.

With regard to cereal, I recommend Enviro-Kids Peanut Butter Panda Puffs. They are the BEST! Their Puffins cereal is pretty awesome, as well!!! They are also pretty much sugar-y (only with organic, healthy sugar) like kids cereal. I just bought some granola-type cereal from Whole Foods. It looks remarkably like the alfalfa blocks we fed our rabbit when we had it. Ick. It tastes pretty good, though! I'll take a gander at what the name is and post that, as well.

Welcome, and please know that you are not alone in your quest to be healthy. You will have a lot of people on whom you can rely upon for the best information and unbelievably good support. It's a journey, let me tell ya!

((((((((Hugs)))))))) to you,

Lynne

Dupuytren's Contracture is actually hereditary . . . . funny that Celiac is, also. My father has Dupuytren's . . . . he has had surgery three times on one hand, twice on the other. His hands are a train wreck. He also has it on the soles of his feet . . . that started about 10-15 years ago. He's 70.

I started with Dupuytren's a few years ago . . . nothing major, though. Since being gluten-free, I have noticed that I have not developed any new areas along the tendon sheaths. I can still feel the "lumps" that I have previously developed along each tendon in my hands, and I haven't noticed that they have gotten any smaller, unfortunately. I, too, am hypermobile -- I think I have inherited all the genetic garbage that my parents could heap upon me -- I have Ehler's-Danlos syndrome, but the hypermobility in my joints has allowed me to keep my tendons stretched very well! I have a couple "lumps" in my feet, but I haven't had them "officially" diagnosed as part of the Dupuytren's. I also have a few knots along my flexor tendons in my forearm, but I think those may be ganglion cysts -- a "bundle" of nerve fibers that develop as a result of over-use. The cure for those, in previous days, was to whack the heck out of them with a book, which would shatter the cyst wall, and the nerve fibers would simply die off. My son had what I thought was a ganglion cyst on the top of his index finger -- it got EXTREMELY large -- he even named it (grose) -- but it was actually a giant cell tumor. I'm glad I didn't whack it with a book!

I, too, am of European descent. Because I am the WORST at geography, I can't tell you of what area! I have a very strong German heritage, I am 1/8 Irish and 1/8 English. Basically, I'm a mutt. A European mutt, but a mutt, nonetheless!

Don't know if this helps any, but wanted to throw my hat in the ring with regard to "does anyone else have it"!!

I am a mechanical engineer/project manager for a company that makes machines for the fiberglass industry. Prior to that I was an engineer for a heavy equipment manufacturer. I am also a single parent with an 11 year old son.

X-Men Rule!

Ian, you rock!! I had no idea you were an engineer. My husband is a naval architect (aka: draws boats -- oops, excuse me -- designs barges and vessels) but it's an engineering degree. He's an engineering manager at JeffBoat. The big joke in my profession is that PT's usually either marry other PT's or engineers. It's because we're the only ones that can tolerate our geek-speak! Seriously, though, it's true. You wouldn't believe the numbers.

Also, you have an 11 year-old??!! So -- does he think you are WAY cool, or what?

Liz,

Congratulations to your daughter! You must be so proud. You are right -- it is SO refreshing to see good kids recognized on television!!! Tell her "WAY TO GO!!!!!!"