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Hi List Members,
I recently joined the list trying to find a solution to a
three year disabling problem. The following summaries are
fascinating. At the end is a summary of what's been happening
to me. You'll understand why they stirred my interest.
This is a summary of Steve in Chicago.
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I have been on a strict GF diet for at least 7 of those 10 months.
>I have been to at least 6 doctors, including two
>neurologists, and none can correlate my symptoms to CD
>or any other problem for that matter. I have been through
>many tests from simple blood tests to brain MRI, and
>nothing is positive.
>(comes and goes)1. Light-headedness,2. Muscle trembling and/or weakness
3. Chills;4. Concentration problems;5. Flare-ups of acne;
6. Skin itching etc.;7. Chest discomfort;8. Mild nausea;
9. Ear ringing (mild).
>Steve in Chicago, Illinois USA
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This is a summary of Amanda L. Lester
......They decided to give me IV Benadryl and solumedrol. Just a
few swconds after they gave me the Benadryl I had the worst medical
reaction of my life. I had uncontrollable panic, violent shakes,
lower limb paralysis, heartrate above 170, "inability to breathe"
feeling and the inability to string more than two words together. The
doctor said he had never seen anything like it. It lasted for so long
they eventually gave me Ativan to knock me out.......
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ME:
Three years ago, I was given Atarax for allergies. Four months
later I ended up in a wheelchair barely able to walk with classic
Myasthenia Gravis or Multiple Sclerosis type symptoms. I stopped the
Atarax and switched to Benadryl with some improvement. It kept me
physically and sometimes mentally disabled for over 1 1/2 years.
After a lot of research I theorized to the Neurologists that the
culprit was anticholinnergics, and active ingredient in Atarax,
Benadryl, etc. They though it "intersting but highly theoretical."
SWitching to Chlortrimeton (sp?) improved conditions again. Assuming
my research to be correct, I stopped all perscriptions and OTC drugs
containing any anticholinergics. The improvement was fourfold.
During the Atarax/Benadryl months: Inability to walk, chocking on food,
short term memory loss, episodic amnesia, muscle jerking, inability of
muscles to move, had to stop driving, decreased bowel motility, ataxia,
and the list goes on.
Today, after all has settled down, the anticholinergics made it
appear as one continuous problem. It is, in fact attacks of some kind.
When they happen they are very similar to Steve in Chicago.
Three Neurologists can't find anything wrong -- refer me to
Endocrinology. Endocrinology, not a hormone problem -- refer back
to Neurology and the circles goes on.
Medical consesus? Never seen anything like it in their life which pretty
much leaves me on my own for a solution.
My original latest research pointed to a very rare disease called
the Porphyrias which they are checking out. My runner up disease
of the month is Celiac or something very similar.
WHAT IS KNOWN THUS FAR
Blood Pressure:During the attack period the pressure goes from a
normal (120-140/80-90) to a (High 160's/90-100)
Potassium:A high dosage of Potassium is required to maintain normal
levels. All attempts at a reason have been futile and remains elusive.
Episodic:After stopping all anticholinergic type drugs it became
apparent that these are "attacks" of some kind. Anticholinergics
made it appear like one continuous very serious Neuro/muscular problem.
Attacks:Somewhat predictable although not always preventable. A
medium-severe attack followed by others. Best description: An earthquake
that is followed by a series of after shocks.
Onset: Agitation, hunger, disabling fatigue with nausea, unable to sleep,
shortness of breath, bowel cramping, ungodly ringing in the ears.
Hereditary:Father had similar problems. I'm ten times worse. A sister
with similar symptoms, but different.
Anticholinergics:Caused serious Neuro/muscular problems mimicking MS,
MG, plus others.
Skin:Continued growth of disfiguring sebaceous keratosis and plantar like
warts. Continued fungal infections: Foot, crotch, armpits that is not
relived by any anti-fungal creams. However, the anti-fungals start to work
and start to make headway between attacks.
Stress/Hormones:Any kind of stress, physical or mental, good or bad usually
precipitates an attack.
(Physical/good) Shopping, having fun, using the wheelchair for 1 1/2 hrs,
exhausted all energy; caused an attack that lasted 7 days.
(Mental/bad) Having both ears impacted, 1- 2 hrs of injections of saline
solution, having to stop because of gross dizziness followed by Amoxicillin,
within 5 days caused a very severe attack lasting 7 WEEKS including
paralyzation of some muscles in the neck.
GI Problem:During the attack period: Gross nausea, constipation, flatulence,
stomach and abdomen distention, ungodly acid indigestion. I literally eat
Tums and Maalox Plus during this time period. Pain in the right side of
abdomen.
Arrhythmias:During the attack period they increase considerably (PVC's).
I think it's because of the GI problem that occurs and the Ethmozine is not
being absorbed etc.
Eyes: Exophthalmus -During the attack the left eye swells considerably. I
think it's because of the GI problem that occurs and the Synthroid (25 years)
is not being absorbed, etc.
Dark Circles:During the attack are a constant for the first few days of the
attack and disappear as things start to work again.
Focus:During the attack period the eyes become difficult to focus. New
glasses don't work. Old glasses don't work. Severe attacks cause a motility
problem.
Blood shot eyes: Unbelievably red in morning, after watching TV or using the
PC. Doctor was checking two days ago and they will start to get very red
while starring at his finger. His comment: Interesting ???
Dental:Mouth goes out of occlusion. No reason. Teeth ache. No reason.
Occasional stabbing pain in one tooth. Dentist only has one other patient
with the stabbing pain part. It's all part of the TRI??? nerve.
Ears:During the attack period the ear wax turns from yellow to a dark brown
with potions that look like dried blood, but was told it isn't blood (I
theorized porphyrin spillage). Ears ring something ferocious.
Semen:Four days after a very severe attack the semen turns a decided pink
color for 1-2 days. No bladder, etc. infection. No blood in urine.
Prostate normal size and palpable (I theorized porphyrin spillage).
Neuro/Muscular:Muscles have always remained strong. They just don't like to
work. Best description: A lamp with a short in the cord. Somedays it
lights, somedays it doesn't, somedays it just blinks on/off. Also one sharp
knife-like stabbing pain of extremely short duration or fast repetitions that
occur in various parts of the body: Toe, side, tooth, tongue, etc.
Immune System Factor?:I not sure how or what. An off the wall example: Give
the immune system something to keep it busy and it lets loose of it's
mischief for a period. First noticed is 1994. After a flu shot, the legs
were noticeably better for a day or two. 1995, command performance. Now
that everything has improved considerably over 93,94,95 during the first
couple days of the cold my legs were actually "normal." By the sixth day
back to how they usually are. Cold was also gone.
Any comments suggestion are gratefully welcome.
Dennis J. Tonetti
JAX, Florida
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