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Tiredofdoctors - Lynne

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Lynne just phoned me to tell me the latest. She had an MRI of the brain yesterday and one of her doctors phoned to tell her that she is going to have a angiogram CT of the brain tomorrow. She has an aneurysm deep in the internal carotid artery.

We both knew from the first appt. that she would probably have to have brain surgery, but not to this extent. I had told her originally that after they shaved a small part of her head, she could do a comb over like Donald Trump. She laughed so hard over that. With this surgery, she will probably have half of her head shaved and she told me that she thought that afterwards she could dye that half black, wear blue lipstick and black nail polish LOL. Go with the punk look.

Lynne and I both believe that she will come through this with flying colors. She had one neuro doctor blow off her symptoms. Her cardiologist insisted that she see her other neuro immediately and made Lynne promise. Otherwise Lynne would have waited until her scheduled August appt. She kept her promise and everything has happened fast since then. So, we feel that this was meant to be caught, before it was too late.

She sees the neuro-surgeon next Tuesday with ALL X-rays in hand.

Please send good thoughts and prayers her way. If Lynne does not post, I will keep everyone up to date.


"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004

Allergies - corn, soy, casein, egg whites and wheat

Morphia Scleroderma

Osteoarthritis

Hypothyroid and Hperthyroid

Essential Tremors

Asthma

Migraines

Fibromyalgia - diag. in 1978 when they called it Fibrositis

PAD Peripheral Artery Disease

Angina and Atrial Fibrillation

Gluten Ataxia

Vitiligo

Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.

Ocular Myastenia Gravis

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I'll definately say a prayer for Lynne! If anyone can carry off having half her head shaved, it's her! :lol: Good thing she won't be able to talk during the surgery or the doctors wouldn't be able to concentrate ... her sense of humor through difficult situations is unbelievable.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Metta:

If anyone could pull this off with some humor, it's Lynne. For those of you who don't know Lynne (she has not posted in a long time due to other health issues), she is one too funny chick. She is a giving and tenderhearted soul.

It's been a tough month for Lynne. Her beloved grandmother died last week at 101. I have been thinking about her every day. My thoughts and prayers are always with Lynne, Dave and her children.

Some of the neatest, coolest, loving friends I have, I have met here. Let's continue to do what we do here. Collective prayers, thoughts and support can carry Lynne a long way.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Thanks for the heads up Armetta. We'll keep her in our thoughts and prayers.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Prayer said! I'll keep praying.

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Armetta,

Thanks so much for the update. We really appreciate it.

Lynne, Hope you sign on and get to read these warm wishes for you. We all hope and pray for the absolute BEST for you. Please let us know what we can to to help....and know that we care deeply for you!

xoxo,

Laura

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I'm praying for her. Let her know she's missed on the board.

I'm sure she'll be able to pull off the hairstyle. I vote for blue with black ends. Very current.

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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I am also here. Please keep us inform of the progress.

I am honor to have friends like all of you.


Have not I commanded you? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the LORD thy God is with you every where you go.

Jos 1:9

I can do all things thru Christ which strengtheneth me.

Phi 4:13

Blood Test: Negative 03/2006

Biopsy Negative 04/2006

Stopped gluten-free diet 04/2006

EnteroLabs: Positive 04/2007

Fecal Antigliadin IgA "Positive"

Fecal Antitissue Transglutaminase IgA "Positive"

Quantitative Microscopic Fecal Fat Score "Positive"

Fecal anti-casein (cow

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I will be calling her tomorrow so I will try to post an update also.....

If anyone can get through this, it's Lynne. She is one of the strongest people I know!

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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I will be praying, too.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Thanks, Metta for the post. I have had her on my mind lately and will keep her in my thoughts and prayers.

Lynne.......hang in there !! I am looking forward to your speedy recovery and brilliant , funny posts!

Ann


Iron deficiency without anemia, unexplained weight loss 2/2003

Positive celiac biopsy 4/2003

Autoimmune thyroiditis 8/2005

Gluten Free Since 2003

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Lynne,

Can I call you Britney? ;)


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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Adding my thoughts and prayers along with everyone. Keeping fingers corssed that everything goes well - and good thing for a second opinion!

Can I call you Britney?

:D:lol::lol::lol:

Good one Karen!

sandy


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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Lynne,

Please know that we wish only the very best for you :) I will keep you in my prayers.

(Thanks, Metta)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Lynne welcomed me so wholeheartedly when I first joined this forum, and made me laugh at my silly fears and unwarraranted complaints about my yucky new disease. I'm sending my prayers, too, Lynne, and hope I can return the favour by sending some laughter your way when you're back on here with us... :)


Emily

diagnosed type one diabetic 1973

diagnosed celiac winter 2005

diagnosed hypothyroid spring 2006

But healthy and happy! 253.gif

11 year-old Son had negative blood panel, but went on gluten-free diet of his own volition to see if his concentration would improve, his temper abate, and his energy level would increase. Miraculous response!

The great are great only because we are on our knees.

--Pierre Joseph Proudhon (1809-1865)

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I'm sending my prayers, too, Lynne, and hope I can return the favour by sending some laughter your way when you're back on here with us... :)

OMG YES!! Lynne has a FANTASTIC sense of humour!!!!

LYNNE!! (Britney ;) ) I know you can get through this with flying colours !! ----will be thinking of you :)


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

black_cat.gif

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((Lynne)) ~ saying a prayer for you!


Mom of:

Carleigh~ 10 years old, allergic to wheat, milk, peanuts, strawberries, and many EAs. She is currently soy-light and egg-light ~ celiac testing inconclusive by allergist.

Gluten-Free since 10/05 She's a gymnast. : )

Nick ~ 13 years old with no known allergies.

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Thinking of Lynne and sending good vibes.

I vote for half blue/half pink with a fake tattoo on the shaved side. The fake tatto should be a "no grain" logo. ;)


Linda, Mom to Ty (11 years old)

Ty was diagnosed by blood test June 7/05

biopsy Aug 11/05, diagnosis confirmed Aug 18/05

Mom, Dad and big brother Celiac-free.

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Of all the people that could use a break from all these health issues, Lynne is at the top of the list.

Say a prayer, keep her in your thoughts and send her plenty of cyber hugs.

Here is one from me Lynne

<<<<<<<<<<<<<HUG>>>>>>>>>>>>>>>>>>>>>>

p.s. I vote mohawk, like Mr. T - you need to show off the scar, it will give you colossol amounts of "street cred".

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I'll be thinking of her and praying also. She has been through so much and is such a help to others. I am so glad they caught this in time.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I'm Baaaaaaaack!!!!!!!!! See, Scott didn't kick me off, after all -- mouth and everything!!!

Thank you guys so much for all the good thoughts.

I CANNOT be Britney -- I wear underwear, Karen. We won't go any further with that. ;)

Mohawk? Good possibility, Chris. Seriously, if you would see me now, you wouldn't believe how long my hair has gotten. I FINALLY have long, luxurious blonde hair (my childhood goal) and wouldn't you know it --it may have to be SHAVED OFF! I would get a lot of street cred if I let my scar show. Although, when I'm downtown at my doctors' offices now, and I go to the two stores that I like, I have to go through a really SKANKY part of town. The last time I was rollin' along, I came across two gang members -- individually. The first one was wearing a black hooded shirt, then a white hoodie on top. I could see the gun shoved in his waistband. He looks at me and says, "You'd better be careful around here, O.K.?" Then, I'm ambling along, come across another gang member (different gang -- different colors). He says, "Hey -- be careful, you hear me?" I told him I'd be careful. Have to say, even the wino's are really nice to me, though. I must have SOME kind of street cred down there!!!

Personally, I'm thinking this: If they can do a cardiac catheterization by going through the groin, then why couldn't they just thread that sucker a little farther up and send it on into my brain? :lol: Think about it -- they're ALL interconnected! :P The only problem would be that instead of branching off like they're supposed to (the OFFICIAL word is "bifurcating" -- just to pseudo-impress you guys), the artery that they think has the aneurysm does a triple loop before going on. See -- I even have talented ARTERIES!!!!!!!!! B) Either that, or they're just as screwed up as I am! I saw a shirt -- it said, "I finally got my head straight, and my body started falling apart." Story of MY life.

I'm, of course, still hoping that it ISN'T an aneurysm, that it just looks like it on the MRI / MRA, and that all will be right with the world again. Realistically, I don't know that I'm being realistic. My neurologist told me when he called -- when he was ordering the MRI and MRA that I should go into the neurosurgeon's office prepared to hear that I have to have surgery. Of course, I'm thinking that there is an impingement on my vertebral artery in the back of my neck, so I'm thinking that I'd just have to have a cervical spine disc removed. I just said, "Okay." in my cheery voice. Then he said, "Lynne, I mean that you need to be prepared that you may have to have BRAIN surgery." My voice wasn't so cheery this time. I just said, "Oh."

So, I do think we need to take a poll: If they have to shave my head, because it is going to be on one particular spot, then what should I do with the REST of it? We know that we have one vote for a mohawk, and I do particularly like the idea of the blue with the black tips. I could pull off Goth. I'd get a fake eye ring, fake lip ring, put a temporary tattoo on the shaved part. I personally think that could work. I would, however, have to shave an ADDITIONAL portion of my head, and I will, of course, film it so that I could be ALMOST as famous as Britney -- but still wear underwear. Don't want any papparazzi shooting pics of -- well, you know -- as I'm getting out of a car. Not only would it be in incredibly poor taste, but I am also a bit older than Britney! :lol::lol::lol: Yuck. Enough of that thought.

In all seriousness, I am scared. I really DO hope that it isn't an aneurysm. Unfortunately, I had the best neurology teacher there ever was, and I was tutored by the neurologist that is treating me when I was in school. Everything that I KNOW says that it is. I guess I'm just hoping that I'm wrong. Also, it's only 3mm. I don't know if that is large for an aneurysm -- I know it's not for large vessels -- it wouldn't even be CONSIDERED in some. I just don't know if it is large for small ones. I'm too scared at this point to look it up. I looked at the MRI films of the brain and cervical spine because I'm nosey -- like those who know me didn't know that. Then, I pulled ONE FILM out of the MRA, saw the "blip", which is what I'm preferring to call it right now, and said, "Holy S*#t." I put the film back in the package with the others, and I haven't looked at them since. That speaks volumes to me.

So, my grandmother must be helping me out. She had her stroke RIGHT AFTER my birthday party. We had walked in the door when we got the call that she had fallen. I went to the ER, and I told her that I knew what had happened, that I knew she could hear us and understand us, but that she just couldn't TALK because of the area of her brain that had gotten hurt. I told her that I promised she would be okay. She turned her eyes and looked at me as if to say, "Don't you DARE lie to me -- I'm your grandmother." When I visited her, I was asking her how she was doing, telling her she looked pretty -- she takes her left hand (her right side was paralyzed) and hits my leg. I kept talking, and she hits my leg again. I said, "I'm doing okay." Then she hits my leg AGAIN. I said, "Okay! They haven't been able to do the biopsy, because I'm arguing with the hospital over the insurance coverage. I'm taking the mitochondrial "cocktail" that the geneticist ordered anyway. I have to go back to the eye doctor in May. Is that enough?" She smiled and stopped hitting my leg! So now she is just making sure that the doctors find EVERYTHING that could be causing the trouble. It could be that, if they could get my left eye better, I could walk better and I wouldn't have so much trouble trying to figure out where everything is -- and I could get NICE new dishes without fear of dropping them off the side of the counter because I couldn't judge where it is! All my really nice dishes have had a number done on them. Sheesh -- such is life. (Karen, did you notice the Canadian reference???) It would also be really nice not to have so many bruises. I look like a battered wife. It's pretty bad. Also, I'm just tired of falling. At some point, it has become really annoying.

Thank you ALL for the prayers, good vibes, cyber-hugs -- I really appreciate -- and NEED them. While I'm keeping a really good bravado around here, I'm also really really scared. Of course, that won't stop me from cracking jokes all the way up until they put me under! I hope it's not one of those things where you have to be awake. OMG -- there is NO WAY I would not be able to keep my mouth under control. Remember the absolutely NO SENSE OF HUMOR nurses when I had my endoscopy and colonoscopy? Can you imagine if they're working on your BRAIN and not your BUTT?? The outlook for that would be bleak.

I still want a vote taken for shave styles -- the more creative, the better!

Love to you all,

Lynne

P.S. If you want my story about what an IDIOT I made of myself with the postman, e-mail me! :o


Lynne

Courage does not always roar. Sometimes it is the quiet voice at the end of the day that says, "I'll try tomorrow".

"There's not a word yet, for old friends we've just met. Part Heaven, part space, or have I found my place? You can just visit, but I plan to stay, I'm going to go back there some day." Gonzo, in the Muppet Movie

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