Autoimmune Diseases For Hashimoto’s thyroiditis (underactive thyroid), Graves’ disease (overactive thyroid), Lupus, Crohn's disease, all types of arthritis, and all other autoimmune diseases. [Multiple sclerosis (MS) and Myasthenia Gravis (MG) have their own forums below.]


advertisement
Reply
 
Thread Tools Display Modes
Old 10-27-2007, 12:30 PM #11
crytears's Avatar
crytears crytears is offline
Member
 
Join Date: Sep 2006
Location: eagle creek oregon
Posts: 165
15 yr Member
crytears crytears is offline
Member
crytears's Avatar
 
Join Date: Sep 2006
Location: eagle creek oregon
Posts: 165
15 yr Member
Default My 2 cents...

I suffered long time with balance loss, ringing ears and "stuff" like that.
At the time I was on a merry-go-round of seeing Neuro's, Rhuemy, Gastro and Endo docs...non of them had the same conclusions...who the heck to beleive?
I had muscle weakness, muscle twitching, Peripheral Neuropathy, Hypo-thyroid=Hashi Moto's,(I had a very raspy horse voice and still continue having this because they can't get a handle on my thryroid levels.
I also had Crohns (had a double resection small bowel 3 ft in all)
2+ years of severe anemia w' lowest 5.1 hgb was from intestinal AVM (anuerism), I had so many blood transfusions I lost count after 25.
And last but not least...Firbromyalgia (who DOESN"T have this?).

I asked each doctor if I had some sort of vit or min deficiency because of my having 25+ years of diarreah first dx as IBS because of FM...
but later dx as Crohns disease BUT..
Since discovering these forums, I learned about B12 defeincy and began taking JUST the Methly B12 sublingual tabs...
within weeks I began to heal....
my loss of balance, dizzyness began to get much better no longer needing the rolla walker or hang onto walls or things just to walk without falling....
AND...I took the advice, given here and BT, to just try a gluten free diet to see if that helped my diarreah and gut pain issues.

But doctors kept telling me I did NOT have C-sprue and didn't need a wheat or gluten free diet.
They told me my B12 level was normal...didn't need supplimenting! as my B12 lvl was 232!yes within guidlines, but is horribly wrong!
Thank God for the great advice about Methyl B12!...I shout THANK GOD!

I've been tested for this thru biopsys and blood, stool test...all negative.
I did have positive serum for Crohns disease...something about being within certain percentile by Permethius Labs in Calif....so my gastro issues WERE auto Immune bowel disease!...thats what they told me all these years.

How could all those gastro's I'd seen be wrong...even the head of Gastro up at the med school of Oregon told me my symptoms were "just" Crohns disease and not because of gluten. Oh how wrong they all were!

I was being urged by many here on these forums to just try a GF diet, I'm stubborn...and what do THEY know anyways!...how foolish this sort of thinking is...wont hurt you to try it!
Finally, last April I began my journey with a gluten free diet...within a few days my diarreah began to disappear....I've enjoyed near normal BM's now ever since...and my gut pain...all gone!...as long as I stick to this GF diet.
I've weaned myself off all Crohns meds such as Immuran, Asocol, Pentasa, Steroids, and I no longer have gut pain!
And my balance issues wax and wayne but never as bad when wasn't taking the Methyl B12.
My Neuropathy is almost gone...I do have slight burning on bottoms of my feet and fingertips....and sometimes I have body wide skin sensitivity (I've been told is a FM issue)
If I fail to take enough B12, my first sign is loss of my balance.
I'd urge anyone with such ear problems, balance or dizzyness issues to at least try a few months of Methyl B12...
it can't hurt you, but must include other supps in order for this to work properly.
Rose has been a God-send for many....I hope you've been in touch with her.
All the doctors who'd seen me failed me miserably...is standard protocol to give Crohns patients B12 shots....especially when have any bowel surgerys such as I had.
I'll never forget my last "visit" with a woman Neuro...her Roll-eyes, huffing, dismissive and very sarcastic. 3 times was 3 too many with her.
I left her office in tears...she made me feel crazy and didn't beleive I was suffering as I'd told her. She told me the muscle twitching was nothing to worry over...was "JUST" BFS (benign muscle fistulations)...idio-pathic!
I was so fatigued and weak my husband had to help dress me and poured me into our car and wheeled me into my appts.
I'd only have my hair combed, teeth brushed when others helped me, i was THAT fatigued...no one could ever beleive this unless they'd experienced this themselves. My husband paid for inhome care givers when he got too busy or needed to focus on his work...he works here in our home and travels from time to time...his home office is right across our bedroom..I slept about 24/7 then and rarely got out of bed...a lot suggested was depression, perhaps if I'd ONLY put on some lipstick and smile I'd feel much better...
I was also seen by a well known Rheumy up at Med School...
she told me all symptoms were "just" Fibromyalgia...God...do they ever think outside the box???...NO!..she was the one who suggested I use lipstick!
Yes...I was very depressed....who wouldn't?...I struggle with crohnic pain on top of all these other issues.
I think because the first Neuro I'd seen, caused the rest of the doctors to disbeleive me...and is reason they refused to order or perform the testings my Rhuemy had asked for...he'd ordered EMG & NC test and a muscle biopsy. He'd diagnosed me with Polymyositis...but the neuros refused to perform any of these thinking I was just malingering.
Finally got the EMG and NC which proved I had moderate sock glove pattern of Perihperal Neuropathy...you cannot fake these test!
Finally they began beleiving something was seriously wrong with me, but still just ordered medications just to mask symptoms...how could they all be so stupid? They were!
Last weeks program on Disc Health Chn...Mystery Diagnosis segment called "Bizzarre Visions"...story of one womans 10 year battle, finally diagnosed as B12 deficiency!...her story nearly exactly mimics mine.
I have this onto DVD disk...if anyone interested I can mail them a copy.
Anyway...I hope this helps a bit....taking B12 certainly won't hurt you!
Blessings, cheryl
__________________
No well behaved woman ever made history!
I am forced to take one day at a time....God won't let me fast foward through the bad times
.
Still life is worth living no matter how bad my pain is....there will be a better day....I tell myself this often, and the sun breaks through the clouds...and I smile!
.
crytears is offline   Reply With QuoteReply With Quote

advertisement
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Graves Disease and Hyperthyroid and Celiac Disease Llonghair Gluten Sensitivity / Celiac Disease 20 06-13-2012 10:17 AM
~ WHY is Everything a Disease?? ~ Wiix General Health Conditions & Rare Disorders 6 05-12-2007 04:29 PM
Is RSD a CNS disease? trix Reflex Sympathetic Dystrophy (RSD and CRPS) 2 03-30-2007 07:15 PM


All times are GMT -5. The time now is 02:37 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.