Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Tiredofdoctors - Lynne


mouse

Recommended Posts

jerseyangel Proficient

Armetta, Thanks for this piece of good news!

I hope you feel better soon :)

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 105
  • Created
  • Last Reply
DingoGirl Enthusiast

Oh! Yes, Armetta, thanks! Keep us posted.......will keep praying. :)

Link to comment
Share on other sites
mouse Enthusiast

Thanks Patti, but this is normal for me. A 5 or 6 on the pain scale I can live with, but a 7, 8 or 9 requires my pain meds. My weekly chiro visit helps.

But, I felt so bad that here Lynne calls with some good news and a dead monkey answers the phone. The phone call was short and I went back to sleep thanking God and thinking about the power of prayer.

Link to comment
Share on other sites
VydorScope Proficient

Tanks for the update!!!!

Link to comment
Share on other sites
CarlaB Enthusiast

Thanks for the update, that's great news!

Link to comment
Share on other sites
Lisa Mentor

Hey Lynne:

If I don't talk to you before tomorrow...MAY THE FORCE BE WITH YOU!!!!!!!!!!!!!!!!!!!

Link to comment
Share on other sites
VydorScope Proficient
Hey Lynne:

If I don't talk to you before tomorrow...MAY THE FORCE BE WITH YOU!!!!!!!!!!!!!!!!!!!

and "street cred" too! :lol:

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

:lol::lol: Street cred :lol::lol:

Sorry Lynne--we're a bunch of nuts, as you know! :P

Link to comment
Share on other sites
aikiducky Apprentice

Ooh, that's good news! :) I have no idea what our time difference is...maybe the doctors appointment has been already. I'll be rooting for you over here, though!

Pauliina

Link to comment
Share on other sites
Cheri A Contributor

Hi.. just wanted to say that I am saying a prayer for you and your doctor today!

Link to comment
Share on other sites
tiredofdoctors Enthusiast

LIFE IS GOOD!!!!!!!!!!!!!

I have an artery that is a little looped too much, but not enough to require surgery. There is NO aneurysm -- it was part of the loops!!!!!

The symptoms that occur when I flex my chin to chest are apparently due to the vertebral artery in my neck being kinked, and then occluded with the flexion. He feels that the change, and the "kink" probably happened during one of my harder falls. I've had several, but Dave and I could easily list four last night that were pretty significant. One, in particular, was when I fell forward off the porch and took a header into the grass. Another one was the calla lilies . . . I think we all remember that!!! :blink: Stupid things -- only three came up last year, and none this year. Hmmmmmph. So, there is a list . . . . . . . .

The difficulty with trying to correct this is multifold. 1) I have a bleeding disorder that has caused me to bleed excessively with each delivery, after and during surgeries, miscarriages, etc. It's because of the Ehler's-Danlos. 2) The angiogram would require opening the femoral artery -- usually not a problem because I've had a cardiac cath and it wasn't bad -- just had to stay lying down with compression over it for a little longer than normal. Evidently, though, because it is active, it would require me to be standing (?) and he said he just isn't comfortable with that 3) The surgery is pretty risky -- it's not the usual surgery and takes about twice the time that you would think a "normal" neck surgery would take. It also has only a 50/50 chance of correcting the problem permanently.

I told him that I wouldn't have the surgery if it was 50/50 even if I DIDN'T have a bleeding disorder! He agreed. So, it was kind of "I went to the doctor and told him it hurts when I do this. He said, 'Don't do that.' " EXACTLY WHAT I WANTED TO HEAR!!! All I need to do is set up things in my house so that I am not positioning myself with my head bent down. Granted, I'm making it sound as though it's going to be the easiest thing in the world, and realistically it's going to be a little harder than that. HOWEVER ---- I don't care -- I'll do that! And, my friend Jeanette, who is an Occupational Therapist had a very "pointed" conversation with me and convinced me that I AM worthy of a home makeover. I told her that everyone who had received one had done something outstanding, and I didn't think that I had. Let's just say I got the message LOUD and clear.

I was really comforted by the nurse-practitioner who did the majority of my visit. She spent at least one hour with me. She said that she strongly felt that the bizarre pupil response that I have is due to the autonomic dysfunction. She explained so many things to me that had been ignored by the other doctor. I was really impressed with her. She has been treating solely neuro patients for 8 years now, and she was really knowledgeable. She also "validated" that the things that I have seen that I KNEW were not normal neuro responses. She didn't give me that "I think you're crazy" look. She even would say -- "I found this - have you seen it before?" when something was not normal. How affirming is that, when you HAVE seen it, but were blown off when you asked the doctor?! She was outstanding. She did say that, because I have such poor control of my left eye, and given the pupil response being abnormal, I really SHOULD get a muscle biopsy. She said that the neuro-opthmalogist is absolutely right. She also said that she knew what I was talking about when I told her what the neuro . . . wanted to do if it's muscular. She said that I should get the biopsy pretty soon. She said I need to talk with the precertification person at the surgeon's office and tell her HOW to get the biopsy done as an inpatient so that I don't have to owe tens of thousands of dollars -- which is what would happen if it was done as an outpatient. Go figure.

So, by and large, I have gotten really good news!!!!! Still have a few 'loose ends' to tie up -- and a few more answers to get, but NO BRAIN SURGERY and NO NECK SURGERY!!!!!!!!!!!!!!!

WOOOOOOOOOOOHOOOOOOOOOOO Time to celebrate!!!

Thank you, THANK YOU for your prayers, for your good thoughts, for that candle that stayed lit ;) , and for everyone who has been so uplifting on this board. You guys are simply the best.

Love to you ALL,

Lynne

Link to comment
Share on other sites
VydorScope Proficient

YAY!!!

Link to comment
Share on other sites
jerseyangel Proficient

This is so good to hear, Lynne! :D

Any news on that makeover?

Link to comment
Share on other sites
Lisa Mentor

SO GLAD YOU RECIEVED GOOD NEW TODAY...(wispering "told ya so")

Link to comment
Share on other sites
pedro Explorer

Yesssssssssssssssssssssssssssssss excellent news

Thanks the heavens.

Link to comment
Share on other sites
angel-jd1 Community Regular
This is so good to hear, Lynne! :D

Any news on that makeover?

I agree jerseyangel...........sounds like Ty needs to get ya called and made over already!! Holey moley girl!! I pray that extreme home makeover picks up your story so that life would be easier on you! You have so much spirit and kindness and plain old "just deserve" this makeover!! Did you guys ever get the tape sent in?

YEAH for the good news!!!! Happy dance! Please don't celebrate by jumping (or falling face forward) off of the porch into your lillies :P

-Jessica :rolleyes:

Link to comment
Share on other sites
Cheri A Contributor

GREAT NEWS! Congratulations!

Link to comment
Share on other sites
Kyalesyin Apprentice

Sounds like an excuse to party if you ask me!

Link to comment
Share on other sites
CarlaB Enthusiast

wooohooo!

Link to comment
Share on other sites
tiredofdoctors Enthusiast

Sounds like an excuse to party to me, too! Since I walk like a drunk, I always wondered if I actually GOT, well, a little more than tipsy, would I walk NORMALLY????!!!!! Found out the hard way in Vegas with Metta & Chris. It's Chris' fault for bringing the New Grist and ordering the last bottle of wine. That's my story & I'm stickin' to it. :P

Link to comment
Share on other sites
mouse Enthusiast

Everything was sent in the end of March and Lynne has not received a call yet. We can only hope and keep praying. I used a green return card and so I know they received it.

Link to comment
Share on other sites
VegasCeliacBuckeye Collaborator

Soooooo,

Vegas is back on?

Link to comment
Share on other sites
aikiducky Apprentice

Woohoo! Nice to come home to such good news! :D

Lynne, you have such impressive sounding problems, I almost had to get a dictionary for the eye things. :blink::)

Pauliina

Link to comment
Share on other sites
Nantzie Collaborator

Oh, I'm so excited for you!!! That's wonderful news.

Hugs, hugs, and more {{{HUGS}}}!!

:D:D:D

Nancy

Link to comment
Share on other sites
Canadian Karen Community Regular

So........

Does this mean there will be no exploding at 10,000 ft.?

:lol:

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.



  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,075
    • Most Online (within 30 mins)
      7,748

    Connie Conner
    Newest Member
    Connie Conner
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Hello, @glucel, Unintended weight loss is symptomatic of Thiamine deficiency.  Our bodies use more Thiamine when we are ill and stressed.  Switching to a gluten free diet can also result in a lower intake of Thiamine.   Interesting Reading: Coronary Artery Bypass Graft (CABG) surgery depletes plasma thiamine levels https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2874825/ Gluten-free diet intervention reduces thiamine intake in two weeks... https://pubmed.ncbi.nlm.nih.gov/34583628/ This study found normal people, without Celiac Disease and malabsorption concerns, had a drop in Thiamine after starting a gluten free diet.  They went back to eating a gluten containing diet.  We don't get that option.  Gluten free processed foods are not enriched with vitamins like gluten containing counterparts.  Supplementing helps boost your absorption of essential vitamins and minerals.
    • knitty kitty
      Hello, @Neat1, Yes, neck and shoulder pain can be symptoms of Gerd, which is fairly common in Celiac Disease. Ask for a DNA test, too.  Celiac Disease is genetic.  If you've got celiac disease genes, further testing is warranted.  Some people have Celiac genes, but don't have active Celiac Disease.  If you've got symptoms, your genes are probably activated.   Diabetes, anemia and Thiamine deficiency can cause false negatives on antibody tests.  Some people with Celiac Disease are seronegative.   Thiamine deficiency can cause constipation and gastrointestinal symptoms.  Magnesium supplementation can help with that, too.  Nutritional deficiencies like these are common in untreated Celiac Disease. Keep us posted on your progress!
    • knitty kitty
      Not really.  Blood tests for vitamin deficiencies are not accurate.  You can have "normal" blood levels and have vitamin deficiency symptoms before blood levels change.  The brain sends messages to the body to release into the bloodstream any extra vitamins stored within cells of tissues and organs so that important organs like the brain and heart can keep getting a supply.  Even what you've eaten in the previous twenty-four to forty-eight hours can affect blood tests.  Taking vitamin supplements eight to twelve weeks before testing, will give falsely elevated results.   Because tests for Thiamine can be so inaccurate, as well as time consuming and expensive, the World Health Organization recommends taking Thiamine and looking for health improvements.  Thiamine is nontoxic, even in high doses.  Thiamine is water soluble and any excess is easily excreted in urine.  WHO recommends giving 500 mg/day of Thiamine Hydrochloride for several days and looking for health improvements.  Some people with Thiamine deficiency need higher doses (1000 - 2000 mg/day).   Benfotiamine, a lipid soluble form of Thiamine, can get inside cells without using the thiamine transporters on the cell surface,  which shut down during thiamine deficiency.  Thiamine Hydrochloride has to get in by transporters, or by passive diffusion, which requires higher doses.  Benfotiamine has been shown to promote intestinal healing.  300 - 1200 mg/day of  Benfotiamine are required. Allithiamine (Tetrahydrofurfuryl Disulfide TTFD) can cross the blood brain barrier without a carrier cell, so Allithiamine is really helpful with neurological symptoms, brain fog, balance issues, problems swallowing, gastroparesis.  50 - 1000 mg/day of Allithiamine.  Find the best dose for you.   I understand the skepticism about Thiamine.  If I hadn't lived through it myself....read my blog...I was skeptical myself, but I could feel myself dying and was grasping at straws.  Within a few minutes of taking my first dose of Thiamine, I felt better and was astounded at how simple the solution was.   Is nutrition even taught in schools today?  I learned basic nutrition in Home Economics, but that's been cut.  Dieting programs distract from nutrition and mostly count calories.   P.S. Riboflavin Vitamin B2 deficiency has been linked to migraines.
    • trents
      As far as your neck and shoulder pain goes, yes, this could be a symptom of celiac disease as one of the more than 200 symptoms associated with celiac disease is joint pain.
    • trents
      10g of gluten or the amount in about 4-6 slices of bread daily for several weeks should be a sufficient "gluten challenge". Your primary care provider should be able to order those tests.
×
×
  • Create New...