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The Life Of A Yorkie....


TheMinsterman

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TheMinsterman Newbie

Hello everyone!

I have been suffering since February 10th this year with a wide range of horrible symptoms. I may also have a vestibular problem and constantly finding fluid in my left ear, maybe due to Perilymph Fistula!

It all begun with an episode of spinning vertigo, slowly but surely it developed into something for more overwhelming and sinister.

My symptoms are -

Loose bowel movements (has improved slightly, was very mucousy and horrible at first)

Weight loss (16 stone towards 14 stone in 3 monthes)

Light headed

Breathing difficulties (I can't feel my own breathe in my windpipe or chest usually, only on lips, rarely in nose)

Loss of sense of where I am in space (Sometimes feels like my arm for example isn't there, yet I know it is)

Cold body parts (Feet usually always cold, fingers and other areas just go cold)

Nausea

Depression

Anxiety

Panic Attacks

Brain Fog (Oh how I loathe this, can be a symptom from my inner ear problems too!)

Odd sleeping patterns (Sometimes I sleep for hours, sometimes I can't sleep, sometimes I can't stay asleep)

Joints always clicking (I'm like a walking musical instrument!)

Sharp pain in lower left abdomen and back (Never long , seconds)

Diminished vision (Though it fluctuates and returns)

Lots of fluid in sinuses (Could be a CSF leak related to PLF)

Mood instability (Always switching between self pity, to anger to emotionless)

Dry mouth

Dry eyes

Genital Issues (My penis is quite paniful at times and dry too, left testicle aches and has for over a year)

Ears popping, leaking, crackling etc

Tinnitus

Weakness (My muscles feel so odd, sometimes its as if I can't control them in same way)

Intermittant "Numbness" (Say I flex my bicep, its as tho I never did it, yet I know I did)

Sore throat

All of this hit in around March and has continued to this date. Before then I had the occassional spells of bad bowels movements and annoying pain in my abdomen, usually on the left. I got terrified when I found lumps in my abdomen, but the Drs (two of them) are confident this is scar tissues as I had alot of pain there following badly done sit ups.

I am at times getting better, at others feeling horrible and as though I'm wasting away and dying. I have a fear of death, this illness has intensified that ten fold.

I was wondering if anybody else had similar symptoms? I have had a weak positive result for my blood tests and am awaiting a endoscopy (have been doing for some time! Ruddy NHS!), but I just get this sneaking suspision it may well be Celiacs.

Hope to get to know you all!


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      Celiac disease can have neurological associations, but the better-described ones include gluten ataxia, peripheral neuropathy, headaches or migraine, seizures, cognitive symptoms, and, rarely, cerebral calcifications or white-matter changes. Some studies and case reports describe brain white-matter lesions in people with celiac disease, but these are not specific to celiac disease and can have many other explanations. A frontal lobe lesion could mean many different things depending on the exact wording of the report: a white-matter spot, inflammation, demyelination, a small old stroke, migraine-related change, infection, trauma, vascular change, seizure-related change, tumor-like lesion, artifact, or something that resolved on repeat imaging. The word “transient” usually means it changed or disappeared, which can happen with some inflammatory, seizure-related, migraine-related, vascular, or imaging-artifact situations.  Hopefully they will find nothing serious.
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      @Heatherisle, I would feel much less worried if you would insist that the doctors administer high dose thiamine hydrochloride (500mg x 3 daily) for several days, with a banana bag (all eight B vitamins, riboflavin makes it yellow like bananas).  Electrolytes may become unbalanced, so monitoring is needed as well.  Just to rule out Thiamine deficiency, high dose thiamine should be administered for several days.  If no health improvement, look for something else. The symptoms your daughter is showing are seen in Wernickes Encephalopathy caused by Thiamine deficiency.  White spots in the brain including on the frontal lobe are seen in Wernickes Encephalopathy.  Blurred vision, balance problems, changed gait (wider stance to compensate for imbalance), tingling in hands and feet, ascending neuropathy, lower back pain, kidney pain, abdominal pain are all symptoms I have experienced when I had Wernickes.  The damage becomes permanent if not corrected quickly.  Korsakoff Syndrome follows with brain damage that cannot be reversed, and death following.   Doctors are not trained in Nutrition.  Doctors are taught Wernickes Encephalopathy only happens in Alcoholism.  My doctors did not recognize Wernickes Encephalopathy because I did not drink alcohol.  If it walks like a duck... Doctors do not realize that Malabsorption from Celiac Disease can result in severe nutritional deficiency diseases, including Wernickes.  Malabsorption of Celiac Disease affects all the essential nutrients, vitamins and minerals, our bodies need to function properly.  It's rare to have a deficiency in just one vitamin.  B12 Deficiency and Thiamine deficiency go hand in hand.   I had symptoms of deficiencies in many vitamins and minerals because my Celiac Disease was still undiagnosed at that time.  They laughed when I asked to be checked for Celiac Disease.  I was overweight (high calorie malnutrition).  I didn't match their " in the box" thinking.  I didn't match their concept of the wasting away, skin and bones stereotype of Celiac Disease.  My doctors wrote me off as "depressed".  I could feel myself dying.  I trusted what I learned at university about how vitamins work inside the body.  I recognized the symptoms of Wernickes and other nutritional deficiency diseases.  At home, I took 500 mg over the counter thiamine hydrochloride and had health improvement within twenty minutes.  I continued supplementing for months, with thiamine and B vitamins and electrolytes.  I continued to have health improvements.  I did suffer some permanent brain damage.  I have permanent vision problems and optic nerve damage.  Computer screens cause migraines.  I struggle through them to help others.   Ask for Thiamine and an Erythrocyte Transketolace Activity Assay.  This test is more accurate than a blood test for Thiamine level, but both tests take time, during which time permanent damage can be done.  The World Health Organization recommends thiamine administration before test results come back in order to prevent permanent damage.   Trying thiamine hydrochloride is simple and cheap and safe and nontoxic.  If high dose thiamine doesn't work, there's no harm done.  Try thiamine supplementation if only to rule out Thiamine deficiency....while there's still time. References: Thiamine Deficiency and Brain Injury: Neuroanatomical Changes in the Wernicke-Korsakoff Syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC12535404/ Concomitant Vitamin B1 and Vitamin B12 Deficiency Mimicking Thrombotic Thrombocytopenic Purpura https://pmc.ncbi.nlm.nih.gov/articles/PMC9887457/ Please have ears to hear.
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