- Messages
- 18
Hi @Freddd and everyone!
I'm 32 and was DX with MS at 20. I've long thought it was an incorrect DX.
I finally went through Freddd's list of symptoms and narrowed it down to only those that I have experienced. I added a couple of my own at the beginning. I was amazed at the list how many of those symptoms I didn't even realize you could describe.
I was feeling pretty hopeless for all of 2013 and a good part of 2012 because I could see that my condition's progression was accelerating rapidly. I have always gotten worse and never better but it was always a slow worsening up until then. I had Norovirus in May 2013 that probably triggered more spiraling.
I began supplementing for MTHFR and methylation on January 2, 2014, and I quit gluten and dairy about a week or two later because the standard foods I knew to eat were making me too lethargic to even function anymore and I lost a lot of weight, I lost muscle, and I got very weak.
I began to feel a little bit better before I changed my diet, but gluten and dairy were among the things that Dr. Lynch says to give up, and I think that was key. I continued to research for weeks and weeks when eventually I came upon the Freddd protocol. After more weeks of reading I placed an order and shortly began on the protocol. I'm really bad at logging things but it has been not even a month and I am noticing positive changes on most days. I definitely experienced a brightening. This is the first time ever in 10+ years that I felt I was getting better rather than worse over time.
I was in to see my doctor and he ordered some blood tests right at the beginning of February before I started on the protocol. That will make a nice marker because it was also right about one month after I stopped gluten and dairy. I just got my lab results. I only know to look at a couple of things. My MCV is 92.5. My K is 3.9. My D vitamin is a 82.2. Do you know of any other pertinent markers I may have available?
From all that I have read, I think there could be something to this. I've played around with my dosages for the past month and I seem to have no start up effects with all of the basics, all cofactors, the deadlock quartet, and almost all of the extended cofactors. I didn't think I had any potassium issues, but I tried out some potassium gluconate tablets a few days ago, and I found that my chest and arm tightness is relieved with 200 to 300 mg. As a result of trying to determine my specific tolerable foods one food at a time I have become better able to detect subtleties in my symptoms. I need to go through the below list again and note in writing what has changed.
I bought a bottle of Perque sublingual hydroxycobalamin because I wanted to know how it would affect me versus the mb12, which makes me sleepy. I feel like it is ineffective at all on me and even possibly stopped healing when I mostly took it instead yesterday in part because I was out of mb12 until today. I have some methylcobalamin lollipops with 3.6mg in them called RevitaPOP which I especially looked forward to after dinner last night.
I have been taking ALCAR right before bed for about a week because I read somewhere it will help with sleep. It seemed to help the first couple nights but now that it is established it just makes me really "high" in bed. I feel great and I can think very clearly. It's frustrating because I have so many thoughts and I don't remember them the next day to share them. I've also been taking L-Carnitine Fumarate 30 minutes before my first meal in the morning. From what I can see they should not overlap because ALCAR has a very short half-life in contrast. Regardless, I am going to switch to only the ALCAR for awhile and only in the morning.
Now I want to settle down with my experimenting and start again. Let's say I am established on all the basics and at least 1-3mg mb12. I will get the current symptom list together soon as well as a list of the supplements and dosages that I've been taking. Would it be possible to give me a step-by-step of when to start the second component of the deadlock quartet and how long do I take that before I add the second? I'm sure there is much more to be said let me know if you have any questions about me.
Thank you for your time and patience.
-N
My symptoms (as of 1/1/2014, already changing) from Freddd's list:
Incessant leg jumping, usually one or other not both, happened this morning, stopped by 198mg potassium gluconate, yay!
Hypersensitive to food, many things can trigger immediate lethargy/weakness
hands lose function with normal use
Sore spots on buttocks from sitting, no visible marks
Sore back of feet, heels
Burning heels of feet
Random twitches throughout body
Jumpy feet/legs
Clonus in feet
Painful arm twitches downward
morning joint stiffness and pain
standing with eyes closed, lose balance - I'm in a wheelchair, but I did before that 9 years ago.
hands feel gloved with loss of sensitivity - glove anesthesia
feet feel socked by loss of sensitivity - stocking anesthesia
glove and stocking anesthesia
neuropathic bladder
unable to release bladder, mild to severe
unable to fully empty the bladder
fecal incontinence - at times in past
tinnitus - ringing in ears -
always feeling cold
intolerance to loud sounds
intolerance to multiple sounds
sleep disorders
non restorative sleep
Sleep paralysis
alteration of touch all over body, normal touch can be unpleasant and painful
alterations of taste
roughening and increased raspiness of voice, mb12 can smooth voice in mid word
blurring of vision - can be sudden onset and sudden return
Visual impairment - varied
intolerance to loud sounds
intolerance to multiple sounds
burning muscle pain
Bursitis
altered bowel habits
abdominal pain
loss of appetite for meat, fish, eggs, dairy, the only b12 containing foods
nutrient specific anorexia
intermittent constipation
Hypersensitivity to touch
Hypersensitivity to odors
Hypersensitivity to tastes
Hypersensitivity to clothing texture
Hypersensitivity to sounds and noises
Hypersensitivity to temperature changes
headaches
mucous becomes thick, jellied and sticky
chronic sinus congestion
dermatitis herpetiformis, chronic intensely burning itching rash
teeth sensitive to hot and cold
canker sores
lack of dreaming
metallic taste in mouth
Widespread body & muscle pain responding to NSAID
Joint pain responding to NSAIDS
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
erectile dysfunction men
limbs feel stiff
Drowsy
Clumsiness
Slow to adapt to night vision
Difficulty in word finding
demyelinated areas on nerves
unsteadiness of gait - when I walked
ataxic gait, particularly in dark - when i walked
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
decreased reflexes
brisk reflexes
Foot Drop
tripping over toes
injuring toes catching top of toes on floor
general feeling of weakness
weight loss involuntary
muscular atrophy
exercise does not build muscle
mild to extremely severe fatigue
easy fatigability
severe abnormal muscle fatigue up to and including apparent paralysis
weakness
muscle pain especially around attachment points to bones
sore muscles throughout body
lack of muscle recovery after exercise
shortness of breath
oxygen hunger
heart palpitations
edema
extremely sore neck muscles
painfully tight, stiff muscles, especially neck, chest and arms
frequent muscle spasms anywhere in body
weak pulse
Difficulty in word finding
irritable
depression
mental slowing
personality changes
chronic malaise
poor concentration
moodiness
tiredness
mood swings
listlessness
impaired connection to others
mentally fuzzy, foggy, brainfog
anxiety or tension
nervousness
I'm 32 and was DX with MS at 20. I've long thought it was an incorrect DX.
I finally went through Freddd's list of symptoms and narrowed it down to only those that I have experienced. I added a couple of my own at the beginning. I was amazed at the list how many of those symptoms I didn't even realize you could describe.
I was feeling pretty hopeless for all of 2013 and a good part of 2012 because I could see that my condition's progression was accelerating rapidly. I have always gotten worse and never better but it was always a slow worsening up until then. I had Norovirus in May 2013 that probably triggered more spiraling.
I began supplementing for MTHFR and methylation on January 2, 2014, and I quit gluten and dairy about a week or two later because the standard foods I knew to eat were making me too lethargic to even function anymore and I lost a lot of weight, I lost muscle, and I got very weak.
I began to feel a little bit better before I changed my diet, but gluten and dairy were among the things that Dr. Lynch says to give up, and I think that was key. I continued to research for weeks and weeks when eventually I came upon the Freddd protocol. After more weeks of reading I placed an order and shortly began on the protocol. I'm really bad at logging things but it has been not even a month and I am noticing positive changes on most days. I definitely experienced a brightening. This is the first time ever in 10+ years that I felt I was getting better rather than worse over time.
I was in to see my doctor and he ordered some blood tests right at the beginning of February before I started on the protocol. That will make a nice marker because it was also right about one month after I stopped gluten and dairy. I just got my lab results. I only know to look at a couple of things. My MCV is 92.5. My K is 3.9. My D vitamin is a 82.2. Do you know of any other pertinent markers I may have available?
From all that I have read, I think there could be something to this. I've played around with my dosages for the past month and I seem to have no start up effects with all of the basics, all cofactors, the deadlock quartet, and almost all of the extended cofactors. I didn't think I had any potassium issues, but I tried out some potassium gluconate tablets a few days ago, and I found that my chest and arm tightness is relieved with 200 to 300 mg. As a result of trying to determine my specific tolerable foods one food at a time I have become better able to detect subtleties in my symptoms. I need to go through the below list again and note in writing what has changed.
I bought a bottle of Perque sublingual hydroxycobalamin because I wanted to know how it would affect me versus the mb12, which makes me sleepy. I feel like it is ineffective at all on me and even possibly stopped healing when I mostly took it instead yesterday in part because I was out of mb12 until today. I have some methylcobalamin lollipops with 3.6mg in them called RevitaPOP which I especially looked forward to after dinner last night.
I have been taking ALCAR right before bed for about a week because I read somewhere it will help with sleep. It seemed to help the first couple nights but now that it is established it just makes me really "high" in bed. I feel great and I can think very clearly. It's frustrating because I have so many thoughts and I don't remember them the next day to share them. I've also been taking L-Carnitine Fumarate 30 minutes before my first meal in the morning. From what I can see they should not overlap because ALCAR has a very short half-life in contrast. Regardless, I am going to switch to only the ALCAR for awhile and only in the morning.
Now I want to settle down with my experimenting and start again. Let's say I am established on all the basics and at least 1-3mg mb12. I will get the current symptom list together soon as well as a list of the supplements and dosages that I've been taking. Would it be possible to give me a step-by-step of when to start the second component of the deadlock quartet and how long do I take that before I add the second? I'm sure there is much more to be said let me know if you have any questions about me.
Thank you for your time and patience.
-N
My symptoms (as of 1/1/2014, already changing) from Freddd's list:
Incessant leg jumping, usually one or other not both, happened this morning, stopped by 198mg potassium gluconate, yay!
Hypersensitive to food, many things can trigger immediate lethargy/weakness
hands lose function with normal use
Sore spots on buttocks from sitting, no visible marks
Sore back of feet, heels
Burning heels of feet
Random twitches throughout body
Jumpy feet/legs
Clonus in feet
Painful arm twitches downward
morning joint stiffness and pain
standing with eyes closed, lose balance - I'm in a wheelchair, but I did before that 9 years ago.
hands feel gloved with loss of sensitivity - glove anesthesia
feet feel socked by loss of sensitivity - stocking anesthesia
glove and stocking anesthesia
neuropathic bladder
unable to release bladder, mild to severe
unable to fully empty the bladder
fecal incontinence - at times in past
tinnitus - ringing in ears -
always feeling cold
intolerance to loud sounds
intolerance to multiple sounds
sleep disorders
non restorative sleep
Sleep paralysis
alteration of touch all over body, normal touch can be unpleasant and painful
alterations of taste
roughening and increased raspiness of voice, mb12 can smooth voice in mid word
blurring of vision - can be sudden onset and sudden return
Visual impairment - varied
intolerance to loud sounds
intolerance to multiple sounds
burning muscle pain
Bursitis
altered bowel habits
abdominal pain
loss of appetite for meat, fish, eggs, dairy, the only b12 containing foods
nutrient specific anorexia
intermittent constipation
Hypersensitivity to touch
Hypersensitivity to odors
Hypersensitivity to tastes
Hypersensitivity to clothing texture
Hypersensitivity to sounds and noises
Hypersensitivity to temperature changes
headaches
mucous becomes thick, jellied and sticky
chronic sinus congestion
dermatitis herpetiformis, chronic intensely burning itching rash
teeth sensitive to hot and cold
canker sores
lack of dreaming
metallic taste in mouth
Widespread body & muscle pain responding to NSAID
Joint pain responding to NSAIDS
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
erectile dysfunction men
limbs feel stiff
Drowsy
Clumsiness
Slow to adapt to night vision
Difficulty in word finding
demyelinated areas on nerves
unsteadiness of gait - when I walked
ataxic gait, particularly in dark - when i walked
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
decreased reflexes
brisk reflexes
Foot Drop
tripping over toes
injuring toes catching top of toes on floor
general feeling of weakness
weight loss involuntary
muscular atrophy
exercise does not build muscle
mild to extremely severe fatigue
easy fatigability
severe abnormal muscle fatigue up to and including apparent paralysis
weakness
muscle pain especially around attachment points to bones
sore muscles throughout body
lack of muscle recovery after exercise
shortness of breath
oxygen hunger
heart palpitations
edema
extremely sore neck muscles
painfully tight, stiff muscles, especially neck, chest and arms
frequent muscle spasms anywhere in body
weak pulse
Difficulty in word finding
irritable
depression
mental slowing
personality changes
chronic malaise
poor concentration
moodiness
tiredness
mood swings
listlessness
impaired connection to others
mentally fuzzy, foggy, brainfog
anxiety or tension
nervousness
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