Hi Jovvo,
Those are the symptoms I and people from that forum and another have had nutrient effectiveness for the listed symptoms. The symptoms are the symptoms that thousands of people suffer from with CFS/FMS/ME and other similar disease patterns, and an international multi country consolidated list of symptoms for B12 and folate deficiencies. Are those 100% of your symptoms, the overall lack of sensitivity and the specific sexual neurological symptoms.
I can think of some possibilities, but I admit I've never seen just this set of symptoms in isolation. For me and most others who have had this set of symptoms have 100-200 other symptoms including other neurological symptoms. I also had overall body lack of sensation. How is your sense of taste? Can you taste and smell strawberries normally for instance?.
A CNS MeCbl deficiency which isn't tested for except in research, might be at cause in the general lack of sensitivity. Let's hypothesize for a moment. Consider SAM-e facilitates/enhances certain functions where it might sort of substitute for folate (hypothetical) but still require the MeCbl which is in short supply for unknown at this moment reason. The MeCbl is redirected to these reactions instead of being in the nerves. Loss of MeCbl causes dimming of the senses, all the senses as far as I know. Then you would have induced methyltrap in the CNS "triage level". Demyelination lesions start to form in about 2 weeks after start of methyltrap in the cord and brain (from a variety of literature) and personal experience, and can severely affect a nerve. Further, neurotransmitters get all messed up by the deficiency. Now in orgasm dopamine and oxytocin both get released in various parts of the brain and especially the limbic system and this is responsible for much of what we feel as orgasm as well as the nerve signals. Now "mute" the nerve signals, and be unable to generate dopamine and oxytocin because of lack of ATP and methylation. The two are mutually dependent so the whole cycle can crash from lack of one thing out of the deadlock quartet. And it is no problem to have a relatively "pure" CNS deficiency of MeCbl or AdoCbl or both.
I can conceive that taking SAM-e under specific circumstances could cause these problems and probably some other non specific or relatively minor symptoms as well. This hypothesis can be tested and if correct your problems can still probably be corrected with the correct treatment. The MeCbl is considered harmless and non toxic. If there is no deficiency it does nothing. To have maximum chance of getting it right would take a bit of planning.
I understand why the neurologist is confused. Being able to list all those symptoms, apparently "nailing" the description I would think that it demonstrates some understanding or at least experience. Many of those symptoms have gone away but some remain as I have a substantial amount of damage from 17 years in methyltrap and partial ATP block. If I am correct most of it is correctable functionally and likely able to mostly heal over the next couple of years. My experience and some others is that the first healing response is the best one and should be ridden as far as possible. Reasonably full healing if possible could take 5 years and a very specific set of circumstances. You can't just throw some B12 at it and expect it to work. There are lots of "if"s here and no guarantees.
You would need the help of somebody who can understand this lingo. I have consulted to MDs on other occasions.
Thanks for the reply Freddd,
I found a long list of symptoms from another thread. I will mark which symptoms I suffer from from this list.
mouth sensitive to hot and cold
sore burning tongue
beef-red tongue, possibly smoother than normal
sore mouth, no infection or apparant reason
teeth sensitive to hot and cold
canker sores
dry mouth
excessive thirst
burning bladder (no UTI)
painful urgency (no UTI)
burning urethra (no UTI)
burning muscle pain
accumulating muscle pains following exertion
sore muscles throughout body
lack of muscle recovery after exercise
exercise does not build muscle
extremely sore neck muscles reversing normal curvature of neck
exercise deblitates for up to a week, making things much worse
painfully tight, stiff muscles, especially legs and arms
frequent muscle spasms anywhere in body
muscle pain especially around attachment points to bones
Eighteen severely tender muscle spots of FMS
Widespread muscle pain responding to NSAID
Bursitis
Joint pain
Pain in weight bearing joints
morning joint stiffness
sick stomach
nausea
stomach not emptying
bloating
frequent vomiting
acid regurgitation
dyspepsia
flatulence
altered bowel habits
abdominal pain
loss of appetite for meat, fish, eggs, dairy, the only b12 contining foods, nutrient specific anorexia
intermittent constipation
intermittant diarrhea
irritable bowel syndrome
Crohns disease (direction of causality if any not established)
Celiac disease (direction of causality if any not established) - gluten sensitivity
Dairy sensitivity - beyond lactose intolerance
sores, ulcers and lesions along entire GI tract or any part
anorexia
Bullimia
weight loss
weight gain
reduced libido - loss of sexual desire
loss of orgasmic intensity
unsatisfying orgasms
inability to orgasm
loss and/or change of genital sensations
burning genital skin sensation
unable to feel aroused
numb genital skin
low sex hormones
MEN
low testosterone
erectile disfunction
low sperm count
poor sperm motility
Poor sperm quality
no sperm
WOMEN
low testosterone
low estrogen
post partum depression
post partum psychosis
False positive pap smears
menstrual symptoms
Frequent miscarriage
PMS
Chronic yeast infections
onset of menopause - unexpected
paleness
rapid heart rate
heart arythymias
shortness of breath
heart palpitations
weak pulse
congestive heart failure
arteriosclerosis
Widespread pain throughout body
Hypothyroid (direction of causality if any not established)
Hasimoto's Thyroiditis, affected during active phase, appears to be deficiency result
High homocysteine
Don't Know
High urinary MMA
dizziness - even unable to walk
vertigo
Confusion
Disorientation
Difficulty in word finding
irritable
depression
SAD - Seasonal Affective Disorder
mental slowing
personality changes
chronic malaise
poor concentration
Difficulty assimilating new information
Reduced task completion
moodiness
tiredness
mood swings
memory loss
listlessness
impaired connection to others
mentally fuzzy, foggy, brainfog
inappropriate anger
rage
psychosis, including many of the most florid psychosis seen in literature, megoblastic madness
Alzheimer's
delirium
dementia
paranoia
delusions
hallucinations - multisensory
anxiety or tension
nervousness
mania
panic attacks
Hypersensitivity to touch
Hypersensitivity to odors
Hypersensitivity to tastes
Hypersensitivity to clothing texture
Hypersensitivity to chemicals
Hypersensitivity to body malfunctions, symtoms
Hypersensitivity to sounds and noises
Hypersensitivity to light and visual stimuli
Hypersensitivity to blood sugar changes
Hypersensitivity to internal metabolic changes
Hypersensitivity to temperature changes
mild to extremely severe fatigue
continuous extremely severe fatigue
easy fatiguability
severe abnormal muscle fatigue up to and including apparent paralysis leading to death
weakness
sleep disorders
non restorative sleep
lack of dreaming
Night terrors
Prolonged hypnogogic state transitioning to sleep
Sleep paralysis
alteration of touch all over body, normal touch can be unpleasant and painful
alterations and loss of taste
taste hallucinations
smell hallucinations
sound hallucinations
visual hallucinations
metallic taste
alterations and loss of smell
loss of smell and taste of strawberries specifically
Haven't had a strawberry in a long time
loss or alteration of smell and taste of potato chips specifically
roughening and increased raspiness of voice, mb12 can smooth in mid word
blurring of vision - can be sudden onset and sudden return
dimmed vision - usually not noticed going into it because change can be very slow or present for life
Visual impairment can be seen; ophthalmological exam may show bilateral visual loss
optic atophy
centrocecal scotomata
hypersensitivity/intolerance to bright light
Slow to adapt to night vision
Night blindness
tearing
redness of eyes
Age Related Macular Degneration
Optic neuritis
diminished hearing - gradual onset or present for life, sudden return possible
tinnitus - ringing in ears
always feeling cold
low body temperature
intolerance to loud sounds
intolerance to multiple sounds
Brainstem or cerebellar signs or even reversible (with mb12) coma may occur
neural tube defect
mother of child with neural tube defect
demyelinated areas on nerves
Don't know
subacute combined degeneration
axonial degeneration of spinal cord
unsteadiness of gait
ataxic gait, particularly in dark
positive Romberg
positive Lhermittes
neuropathies, many types
progressive bilateral neuropathies
demyelination of nerves - white spots on nerves on MRIs
l
oss of detail and sensual aspects of touch all over body
paresthesias anywhere in body - tingling, pins and needles, etc
paresthesias in one left foot only
paresthesias in one right foot only
paresthesias in one left leg only
paresthesias in one right leg only
paresthesias in one left hand only
paresthesias in one right hand only
paresthesias in one left arm only
paresthesias in one right arm only
paresthesias in both feet - cobwebs, hairs etc
paresthesias in both feet - burning, cold, wet, etc
paresthesias in both feet - tingling,painnful tingling, etc
paresthesias in both feet - pain - mild to seveere or acute, shallow to deep, etc
paresthesias in both feet - numbness in skin, etc
paresthesias in both feet - numbness in muscles, etc
paresthesias in both legs - cobwebs, hairs etc
paresthesias in both legs- burning, cold, wet, etc
paresthesias in both legs - tingling,painnful tingling, etc
paresthesias in both feet - pain - mild to seveere or acute, shallow to deep, etc
paresthesias in both legs- numbness in skin, etc
paresthesias in both legs - numbness in muscles, etc
paresthesias in both legs - burning, tingling, cobwebs, wet, hair, pain, numbness, etc
paresthesias in both hands - burning, tingling, cobwebs, wet, hairs, pain, numbness, etc
paresthesias in both arms - burning, tingling, cobwebs, wet, hairs, pain, numbness, etc
Loss of position sense is 1 of 2 most common abnormality (or vibration sense)
Loss of vibration sense is 1 of 2 most common abnormality (or position sense)
Loss of motor control over some or all of toes
Loss of motor control over part or all of feet
Loss of sense of joint position
hands feel gloved with loss of sensitivity - glove anesthesia
feet feel socked by loss of sensitivity - stocking anesthesia
glove and stocking anesthesia
trembling
neuropathic bladder
unable to release bladder, mild to severe
unable to fully empty the bladder
urinary incontenance - occasionally to frequently
fecal incontinance - occasionally to frequently
sudden electric like shocks/pains shooting down arms, body, legs shooting down from neck movement
sudden "ice pick" pain
standing with eyes closed, a slight nudge or bump causes loss of balance
most patients have signs of both spinal cord and peripheral nerve involvement
The effect on reflexes is quite variable
Motor impairment may range from only mild clumsiness to a spastic paraplegia
clumsiness
slowed nerve impulses
decreased reflexes
difficulty swallowing
brisk reflexes
decreased deep tendon reflex
toes turn up instead of down in reflex to sole stimulation
Positive bilateral Babinski reflex
Foot Drop
tripping over toes
injuring toes catching top of toes on floor
general feeling of weakness
drowsy
suspicious
apathetic
rapid and unpredictable emotional changes
limbs feel stiff
impaired white blood cell response
poor resistance to infections
easy bruising
pronounced anemia
macrocytic anemia
megablastic anemia
pernicious anemia
decreased blood clotting
low hematocrit
MCV > 93 first warning,
MCV > 97 alert
MCV > 100 outright macrocytosis
MCV > 105 urgently needs treatment, severe problem
elevated MCH (Mean Corpuscular Hemoglobin)
elevated LDH
big fat red cells (when said this way usually with happy or healthy modifying it completely misinterpreting results of MCV
platelet disfunction, low count
white cell changes, low count
hypersegmented neutrophils
headaches
inflamed epithelial tissues - mucous membranes, skin, GI, vaginal, lungs
inflamed endothelial tissues - lining of veins and arteries
mucous becomes thick, jellied and sticky
asthma
chronic cough that mimics asthma but isn't
chronic sinus congestion
dermatitis herpetiformis, chronic intensely burning itching rash
frequent infected follicles or acne type lesions all over body
chronic infections, many varieties possible
Seborrheic dermatitis
dandruff
eczema
dermatitis
skin on face, hands, feet, turns brown or yellow if anemia occurs
poor hair condition
thin nails
transverse ridges on nails, can happen as healing starts
splits/sores at corners of mouth -angular cheilitis
Hyperhidrosis - excessive sweating
Bariatric surgery
Dilantin and some other medications
Relatives, grandparant, parent, sibling, child, grandchild ever needing b12 shots or supplement
coma
seizures
brain atrophy with ileal tuberculosis preventing b12 absorbtion
Intestinal parasites
Intestinal bacterial overgrowrth
Low CSF cobalamin
Elevated CSF MMA
Elevated CSF Hcy
Low blood serum level
Elevated uMMA
Elevated blood serum Hcy
Starting AS INFANT OR CHILD
delayed myelination
failure to thrive
autism
delayed speech
depression
frequent or continuous toncilitis
frequent strep
frequent pneumonia
frequent longlasting supposed viral illnesses that linger and linger and linger
everything goes to the lungs for extended periods
headaches
growing pains
skin problems
dandruff
allergies
asthma
continuous swolen glands in neck
low grade fever for years
Night terrors
Prolonged hypnopompic state transitioning from sleep
Prolonged hypnagogic state transitioning to sleep
Sleep paralysis
seizures
coma
nosebleeds
FREQUENT DIAGNOSES OR OTHER PROVIDER BEHAVIOR
FMS
CFS
ME
ED
IBS
Sub-acute combined degeneration
Low Testosterone
Fertility Problems, male and female
Sleep Disorders
Neural Tube Defects
Peripheral Neuropathy
Polyneuropathy
Autonomic neuropathy
Conversion Disorder
Hypochondria
"TOO many symptoms to be believable"
Liar
Alcoholic - non-drinker or genuine light drinker
Removed from Practice for knowing to much
Its All In Your Head - IAIYH
Removed from practice for insisting that there is REALLY something wrong instead of IAIYH
Alzheimer's
There are several things from this list that I'm not sure of. I'm not sure of my sense of taste. I have not had a strawberry in a long time. I will buy some today and test it though.
I've been reading that most people recommend that SAM-e be taken along with B vitamins or else it will raise homocysteine levels. I didn't take any b vitamins during my trial with the SAM-e. I don't know if that's worth mentioning.
What is MeCbl? Is that a supplement?