Aa
Constant Vertigo and Numbness in extremeties
Do you have any suggestions as to what avenue to explore next?My husband has had numbness in his hands,arms,feet,&legs for over 2-1/2 yrs.He has had severe vertigo for 2 yrs.He has visual disturbances,gets a vibrating sensation in his head,pain in his hands,extreme nausea & is always susceptibe to illness.Sometimes complains his heart hurts or feels wierd,severe headaches,loses his balance & has the dropsies.He's been thru the works and has seen 3 different neurologists.He's had 2 MRI's of his head, 1 MRI of the cervical area, 3 EMG's, 2 Spinal Taps, EKG's, two different ENG's, Blood work to check B-12 levels, heavy metal screening, even been to a ENT & had exploratory ear surgery.Nothing has shown in any of the test & No one has yet been able to diagnose him or relieve his symptom with meds(tried meclazine,scoplamine patch,neurotin,anti-depressants).The chronic vertigo has incompacitated him the most.Recently went to a hematologist.All blood work normal except hemoglobin type D was low.Only one EMG over a year ago indicated some progressive sensory neuropathy.A repeat EMG a few months ago didn't indicate anything.All this came on after husband had slight fever and intense headache one day.Guillaume Barre ruled out.Would seeing a neuro-otologist reveal anything different that the other 3 Neurologists couldn't discover?Could this be some a-typical variation of CFS or IDS.At the time his symptoms first manifested themselves,a case of viral menengitis had been reported at his work.Husband is prone to repeat sinus infections.Had sinus surgery in past.Where to go next?
did you check for lyme disease!!!!!
MGH - Massacheussetts General Hospital is in Boston and is associated with Harvard. They have an excellent neurology department.
http://neuro-mancer.mgh.harvard.edu/cgi-bin/Ultimate.cgi
takes you to the MGH Neurology Webforum.
This is the public BBS section. From there you can get into the hospital section and check out their neurology department. Also they have a very active neurology BBS with hundreds of posts a day in about 190 different categories.
Today, after almost 3 months of methylB12 while everything isn't done with healing I am doing massively better. My daily morphine use is down 40% merely being responsive to the reduced pain. Even (especially) the central pain element is diminishing. Everything I sense is different from taste and smell to touch everywhere on my body, to more visual detail, brighter colors, brighter scene, massively improved mood in every way, eyes focus easier, sudden visual quivering and blurring is gone. My entire neurology has been affected beyond anything I would have imagined before this. I even "connect" with people far better. I can walk 3.5 miles in under 40 minutes straight out of bed and feel good the rest of the day. Before recent changes getting functional for the day took 2-3 hours, going shopping required 5 days of recovery before I could venture out again. Doing something 2 days in a row could overload me for more than a week. I am getting aerobic capacity back. It had completely disappeared for 15 years.
The last couple of weekends I played some croquet. I won 3 of 4 games. In the past 3 years my record has been winning one of about 50+ games. Now the ball goes where I had been trying to hit it all along. My typing speed has increased and typos have decreased dramatically in the past two weeks.
So Fried, I don't know if any of your husband's problem is caused or contributed to by methylB12 deficiency. What I do see from your description is that everything you mention so far fits into a severe methylB12 deficiency picture. I have included a list of symtoms below that might have a few more of his unmentioned symtoms on it. Most people only have a subset of these symtoms, and more that just aren't included yet on one or another list. Testing that could indicate it are high MMA levels in urine and high serum hmocysteine levels. In the end a trial has no downside except that lengthy and expensive testing trying to pin down the exact cause is interferred with. Besides, no matter what the testing shows as the reason for deficiency the answer is the same, supplement.
And brand of methylb12 does matter for me and at least a few other hypersensitives. One brand worked very well, one very little and one appears to going pretty well in short term and now moving to two week testing.
The brand that worked for all 4 hypersensitives was Enzynmatic Therapy Bioactive B12 methylcobalamin 1000mcg. The other brand that works so far (3 day test) is Jarrow Methyl B-12 1000mcg methylcobalamin. All 4 of us are sensitive to day to day variations. Good luck
What I said the day after trying methylB12.
Something amazing and wonderful has happened. I have had neuropathies going on in both hands and both feet for years. My tongue has been beef red and burning on and off for years. My memory has been getting worse. I've been getting clumsy. I've had sores (not coldsores) that come and go at the corners of my mouth since I was a kid. All sorts of parathesias in legs and arms, hands and feet. My elbows and arm muscles have been so sore for at least 7 or 8 years that they are hardly usable. I have been having trouble learning some new programming languages, and sort of a physiological depression that doesn't show as depression on any of the psychological scales. For 15 years the fatigue has been terrible. I caould hardly walk up the stairs. It was like every movement was through molassis in January.
A month ago I started taking a second B-complex supplement in addition to the one in the multivitamin pack. In a week the burning tongue decreased. After a while I ran out. My tongue got far worse in 2 days. I went and got more of the hi potency B. It diminished again. I started doing so reading and decided to increase the B12. I did so with 500mcg of oral cyanocobalamin and also added 1600mcg of folic acid. Over a period of a week I seemed to have a little more energy and felt a little better. Then I found out about the bioactive version of B12, methylcobalamin, to which cyanocobalamin might be converted in the body if things go right.
I went and got a bottle last night. They are a 1mg (1000mcg) sublingual tablet. 15 minutes after it went under my tongue my a "wave" passed through my body and it was llike throwing a switch. The lights came on. My consciousness was changed on the spot. Half a dozen times in my life this has happened for no apparent reason and ALWAYS went away the next time I was ill or in a lot of pain; so it lasted from days to a year or two once. The rest of the time I was struggling against this nondepression depression.
B12 Deficiency Symtoms
Symtoms I don't have:
classic pernicious anemia
pronounced anemia
Psychosis
delusions
hallucinations
pallor
heart attacks
strokes
heart pain
palpitations
tachicardia
large red cells
"megaloblastic madness"
Symptoms Not sure of or need test:
Spinal degeneration
impaired white blood cell response
ataxia
Symtoms I do have:
ataxic gait only in the dark
chronic malaise
Fatigue
tiredness
easy fatiguability
Depression
moodiness
poor concentration
Confusion
disordered sleep
lack of restorative sleep
Memory loss
intense headaches
spasms all over body
irritability
listlessness
Glossitis (inflamed tongue) (red crack tongue)(beef-red burning tongue)
sore mouth
sores in mouth
progressive peripheral neuropathy
numbness of the fingers
paresthesias
weakness, especially in arms and legs
tinnitus
clumsiness
slowed nerve impulses
poor resistance to infections
bruising
some forms of dermatitis (all my life)
mood swings
painful urinary urgency in bladder
roughening of voice
alterations of smell and taste
loss of details and sensual aspects of touch all over body
hands feel "gloved" with loss of sensitivity
mucous becomes jellied and sticky
painful urinary urgency in bladder
painful urination
very intense sensation when urine passes through urethra
severe nausea lasting days
dizziness
erectile dysfunction
lightheaded
anorexia
positive Babinski sign
positive Romberg sign
loss of deep tendon reflexes in ankle
many digestive disturbances
nausea
vomiting
weight loss
flatulence
diarrhea
constipation
Gingival bleeding (bleeding gums)
light-headedness
disturbed vision (ciplopia, blurriness)
fatigued eye muscles
IBS
severe weakness to the point of hardly being able to move for weeks at a time
pneumonias
whole body pain
distorted positional sense
dimmed vision
bruising
personality changes
Related complications:
"People with pernicious anemia may have gastric polyps and have twice the incidence of gastric cancer and gastric carcinoid tumors than the normal population.
Persistent neurological defects may be present if treatment is delayed.
Vitamin B12 deficiency affects the appearance of all epithelial cells, therefore an untreated woman may obtain a false positive pap smear."
http://www.henryfordhealth.org/15104.cfm
Drugs causing or contributing to B12 deficiency
colchicine, neomycin, tuberculosis treatment with para amino salicylic acid, Dilantin
Nitrous oxide - can induce sudden b12 deficiency crisis and death in some people
Comment by one MD:
"When treatment is initiated, five to seven injections may be given over a short time-span. Response to this therapy is usually seen within 48 to 72 hours."
With a sublingual tablet my response started within 15 minutes.
Onset order
chronic malaise
Lights go off (natural and normal supplement)
depression
painful with parathesias - feet
Started with feelings of hairs or spider webs brushing my toes
painful with parathesias - hands
painful with parathesias - arms
painful with parathesias - legs
growing numb spots in foot muscles by ball of foot
beef red burning painful tongue
add cracked to that tongue
painful urinary urgency in bladder
roughening of voice
alterations of smell and taste
My wife had a bag of potato chips of a brand we usually buy. I tasted and smelled a couple of them and they smelled and tasted really different despite everybody else telling me they were the same as ever.
onset order as revised 06/04/03
chronic malaise
Lights go off (natural and normal supplement), depression
depression
feelings of hairs or spider webs brushing my toes
painful with parathesias - feet
painful with parathesias - hands
painful with parathesias - arms
painful with parathesias - legs
increased clumsiness in general, more typos, switched to small knives from french chef's knife
at unknown time smell and taste lose details and nuances
skin sensation changes loosing detail, less sensual
hands lose aspects of touch, detail and sensitivity, feels like rubber gloves on
growing numb spots in foot muscles by ball of foot
beef red burning painful tongue
add cracked to that tongue
mucous becomes jellied and sticky
painful urinary urgency in bladder and painful urination
I started with 1 week of 562mcg cyanob12 supplement. It made small notiacable changes in my tongue, bladder and some pains, when I took the 1000mcg methylb12 under my tongue, the lights started to come on 15 minutes later as a wave swept through me and were well on 30 minutes later. I have never before had such a profound change in conciousness from a vitamin in 15 to 45 minutes. I also took a high potency b complex and 2400 mmcg of Folic acid each day. For the past 5 days I've been taking the methylcobalamin; a total of perhaps 12mg. Each additional pill makes less and less directly and immeidately perceivable difference. The rest of the b complex is needed for the B12 to be able to be utilized properly.
Retreat order previously and now, still in progress
Original plus edits:
Rough voice smoothed out in midword
Lights go on (only with methylB12 large dose) if oral cyanob12, it's the last thing to come back if at all as demonstrted in the past.
painful urinary urgency in bladder
Beef red painful tongue fades and heals
Sores at corners of mouth heal {folic acid)
Parathesias in hands have stopped
Parathesias in feet have changed
Pain in arms and hands has lessened
Numb areas in feet are starting to hurt and additional paresthesias instead. Some tingles are outright painful.
alterations of smell and taste
06/04/03 version of list:
Depression is gone in 1 hour, Lights go on (only with methylB12 ) if oral cyanob12, it's the last thing to come back if at all
voice smooths out at 1 hour in mid word
Severe severe fatigue is gone in one hour
painful urinary urgency in bladder fades
Intense urethral sensations during urination fades
Beef red painful burning tongue fades and heals
Parathesias in hands have changed and decreased
Parathesias in feet have changed
Pain in arms and hands has lessened
Numb areas in feet are changing shapes and starting to hurt and additional paresthesias instead. Some tingles are outright painful.
clumsiness decreasing, switched back to french chef's knife
Legs are aching as they haven't in years
Outside of calves hurt less acutely
malaise is lifting
no trace of headache in first 10 days
sense of smell has gained detail and nuance
sense of taste has gained detail and nuance
sense of touch all over body is becoming more sensual, more detailed
sense of touch in hands is gaining sensitivity, the "gloved" feeling is fading
mucous has normalized
improved quality of sleep
sleeping longer, pain isn't interferring after 5 or 6 hours
sleep is restorative
muscles recover from exercise
muscle mass is increasing with exercise for the first time in 25 years
I have regained the ability to do aerobic exercise
positional sense is improving
clumsiness is decreasing
http://neuro-mancer.mgh.harvard.edu/cgi-bin/Ultimate.cgi
takes you to the MGH Neurology Webforum.
This is the public BBS section. From there you can get into the hospital section and check out their neurology department. Also they have a very active neurology BBS with hundreds of posts a day in about 190 different categories.
Today, after almost 3 months of methylB12 while everything isn't done with healing I am doing massively better. My daily morphine use is down 40% merely being responsive to the reduced pain. Even (especially) the central pain element is diminishing. Everything I sense is different from taste and smell to touch everywhere on my body, to more visual detail, brighter colors, brighter scene, massively improved mood in every way, eyes focus easier, sudden visual quivering and blurring is gone. My entire neurology has been affected beyond anything I would have imagined before this. I even "connect" with people far better. I can walk 3.5 miles in under 40 minutes straight out of bed and feel good the rest of the day. Before recent changes getting functional for the day took 2-3 hours, going shopping required 5 days of recovery before I could venture out again. Doing something 2 days in a row could overload me for more than a week. I am getting aerobic capacity back. It had completely disappeared for 15 years.
The last couple of weekends I played some croquet. I won 3 of 4 games. In the past 3 years my record has been winning one of about 50+ games. Now the ball goes where I had been trying to hit it all along. My typing speed has increased and typos have decreased dramatically in the past two weeks.
So Fried, I don't know if any of your husband's problem is caused or contributed to by methylB12 deficiency. What I do see from your description is that everything you mention so far fits into a severe methylB12 deficiency picture. I have included a list of symtoms below that might have a few more of his unmentioned symtoms on it. Most people only have a subset of these symtoms, and more that just aren't included yet on one or another list. Testing that could indicate it are high MMA levels in urine and high serum hmocysteine levels. In the end a trial has no downside except that lengthy and expensive testing trying to pin down the exact cause is interferred with. Besides, no matter what the testing shows as the reason for deficiency the answer is the same, supplement.
And brand of methylb12 does matter for me and at least a few other hypersensitives. One brand worked very well, one very little and one appears to going pretty well in short term and now moving to two week testing.
The brand that worked for all 4 hypersensitives was Enzynmatic Therapy Bioactive B12 methylcobalamin 1000mcg. The other brand that works so far (3 day test) is Jarrow Methyl B-12 1000mcg methylcobalamin. All 4 of us are sensitive to day to day variations. Good luck
What I said the day after trying methylB12.
Something amazing and wonderful has happened. I have had neuropathies going on in both hands and both feet for years. My tongue has been beef red and burning on and off for years. My memory has been getting worse. I've been getting clumsy. I've had sores (not coldsores) that come and go at the corners of my mouth since I was a kid. All sorts of parathesias in legs and arms, hands and feet. My elbows and arm muscles have been so sore for at least 7 or 8 years that they are hardly usable. I have been having trouble learning some new programming languages, and sort of a physiological depression that doesn't show as depression on any of the psychological scales. For 15 years the fatigue has been terrible. I caould hardly walk up the stairs. It was like every movement was through molassis in January.
A month ago I started taking a second B-complex supplement in addition to the one in the multivitamin pack. In a week the burning tongue decreased. After a while I ran out. My tongue got far worse in 2 days. I went and got more of the hi potency B. It diminished again. I started doing so reading and decided to increase the B12. I did so with 500mcg of oral cyanocobalamin and also added 1600mcg of folic acid. Over a period of a week I seemed to have a little more energy and felt a little better. Then I found out about the bioactive version of B12, methylcobalamin, to which cyanocobalamin might be converted in the body if things go right.
I went and got a bottle last night. They are a 1mg (1000mcg) sublingual tablet. 15 minutes after it went under my tongue my a "wave" passed through my body and it was llike throwing a switch. The lights came on. My consciousness was changed on the spot. Half a dozen times in my life this has happened for no apparent reason and ALWAYS went away the next time I was ill or in a lot of pain; so it lasted from days to a year or two once. The rest of the time I was struggling against this nondepression depression.
B12 Deficiency Symtoms
Symtoms I don't have:
classic pernicious anemia
pronounced anemia
Psychosis
delusions
hallucinations
pallor
heart attacks
strokes
heart pain
palpitations
tachicardia
large red cells
"megaloblastic madness"
Symptoms Not sure of or need test:
Spinal degeneration
impaired white blood cell response
ataxia
Symtoms I do have:
ataxic gait only in the dark
chronic malaise
Fatigue
tiredness
easy fatiguability
Depression
moodiness
poor concentration
Confusion
disordered sleep
lack of restorative sleep
Memory loss
intense headaches
spasms all over body
irritability
listlessness
Glossitis (inflamed tongue) (red crack tongue)(beef-red burning tongue)
sore mouth
sores in mouth
progressive peripheral neuropathy
numbness of the fingers
paresthesias
weakness, especially in arms and legs
tinnitus
clumsiness
slowed nerve impulses
poor resistance to infections
bruising
some forms of dermatitis (all my life)
mood swings
painful urinary urgency in bladder
roughening of voice
alterations of smell and taste
loss of details and sensual aspects of touch all over body
hands feel "gloved" with loss of sensitivity
mucous becomes jellied and sticky
painful urinary urgency in bladder
painful urination
very intense sensation when urine passes through urethra
severe nausea lasting days
dizziness
erectile dysfunction
lightheaded
anorexia
positive Babinski sign
positive Romberg sign
loss of deep tendon reflexes in ankle
many digestive disturbances
nausea
vomiting
weight loss
flatulence
diarrhea
constipation
Gingival bleeding (bleeding gums)
light-headedness
disturbed vision (ciplopia, blurriness)
fatigued eye muscles
IBS
severe weakness to the point of hardly being able to move for weeks at a time
pneumonias
whole body pain
distorted positional sense
dimmed vision
bruising
personality changes
Related complications:
"People with pernicious anemia may have gastric polyps and have twice the incidence of gastric cancer and gastric carcinoid tumors than the normal population.
Persistent neurological defects may be present if treatment is delayed.
Vitamin B12 deficiency affects the appearance of all epithelial cells, therefore an untreated woman may obtain a false positive pap smear."
http://www.henryfordhealth.org/15104.cfm
Drugs causing or contributing to B12 deficiency
colchicine, neomycin, tuberculosis treatment with para amino salicylic acid, Dilantin
Nitrous oxide - can induce sudden b12 deficiency crisis and death in some people
Comment by one MD:
"When treatment is initiated, five to seven injections may be given over a short time-span. Response to this therapy is usually seen within 48 to 72 hours."
With a sublingual tablet my response started within 15 minutes.
Onset order
chronic malaise
Lights go off (natural and normal supplement)
depression
painful with parathesias - feet
Started with feelings of hairs or spider webs brushing my toes
painful with parathesias - hands
painful with parathesias - arms
painful with parathesias - legs
growing numb spots in foot muscles by ball of foot
beef red burning painful tongue
add cracked to that tongue
painful urinary urgency in bladder
roughening of voice
alterations of smell and taste
My wife had a bag of potato chips of a brand we usually buy. I tasted and smelled a couple of them and they smelled and tasted really different despite everybody else telling me they were the same as ever.
onset order as revised 06/04/03
chronic malaise
Lights go off (natural and normal supplement), depression
depression
feelings of hairs or spider webs brushing my toes
painful with parathesias - feet
painful with parathesias - hands
painful with parathesias - arms
painful with parathesias - legs
increased clumsiness in general, more typos, switched to small knives from french chef's knife
at unknown time smell and taste lose details and nuances
skin sensation changes loosing detail, less sensual
hands lose aspects of touch, detail and sensitivity, feels like rubber gloves on
growing numb spots in foot muscles by ball of foot
beef red burning painful tongue
add cracked to that tongue
mucous becomes jellied and sticky
painful urinary urgency in bladder and painful urination
I started with 1 week of 562mcg cyanob12 supplement. It made small notiacable changes in my tongue, bladder and some pains, when I took the 1000mcg methylb12 under my tongue, the lights started to come on 15 minutes later as a wave swept through me and were well on 30 minutes later. I have never before had such a profound change in conciousness from a vitamin in 15 to 45 minutes. I also took a high potency b complex and 2400 mmcg of Folic acid each day. For the past 5 days I've been taking the methylcobalamin; a total of perhaps 12mg. Each additional pill makes less and less directly and immeidately perceivable difference. The rest of the b complex is needed for the B12 to be able to be utilized properly.
Retreat order previously and now, still in progress
Original plus edits:
Rough voice smoothed out in midword
Lights go on (only with methylB12 large dose) if oral cyanob12, it's the last thing to come back if at all as demonstrted in the past.
painful urinary urgency in bladder
Beef red painful tongue fades and heals
Sores at corners of mouth heal {folic acid)
Parathesias in hands have stopped
Parathesias in feet have changed
Pain in arms and hands has lessened
Numb areas in feet are starting to hurt and additional paresthesias instead. Some tingles are outright painful.
alterations of smell and taste
06/04/03 version of list:
Depression is gone in 1 hour, Lights go on (only with methylB12 ) if oral cyanob12, it's the last thing to come back if at all
voice smooths out at 1 hour in mid word
Severe severe fatigue is gone in one hour
painful urinary urgency in bladder fades
Intense urethral sensations during urination fades
Beef red painful burning tongue fades and heals
Parathesias in hands have changed and decreased
Parathesias in feet have changed
Pain in arms and hands has lessened
Numb areas in feet are changing shapes and starting to hurt and additional paresthesias instead. Some tingles are outright painful.
clumsiness decreasing, switched back to french chef's knife
Legs are aching as they haven't in years
Outside of calves hurt less acutely
malaise is lifting
no trace of headache in first 10 days
sense of smell has gained detail and nuance
sense of taste has gained detail and nuance
sense of touch all over body is becoming more sensual, more detailed
sense of touch in hands is gaining sensitivity, the "gloved" feeling is fading
mucous has normalized
improved quality of sleep
sleeping longer, pain isn't interferring after 5 or 6 hours
sleep is restorative
muscles recover from exercise
muscle mass is increasing with exercise for the first time in 25 years
I have regained the ability to do aerobic exercise
positional sense is improving
clumsiness is decreasing
As Cleveland is probably 9-10 hours away and my husband could never make the trip. Just going to the grocery store is a major accomplishment. Can any one recommend a neuro-otologist or otoneurologist in a acedemic center in either New York City or Boston. Both locations are only 2-3 hours from our home. I'm thinking of trying to some how get him to New York Prysbetarian Hospital. Any recommendations of who to see?
Can anyone comment as to why when the diagnostic test don't show anything clearcut, Dr.'s just want to attribute it all to depression, send you to a psychiatrist, and put you on anti-depressents? What do you have to do to get someone to be an advocate for you and solve the mystery?? We've been to what I thought was a consult with a top neurologist at Massachusetts General and got the same line of bull.... at $400+ a pop out-of pocket for a half hour visit. How do I battle with the HMO to get him to a large acedemic center to unravel the mystery? The last attempt to get him to some type of clinic only resulted in in the insurance company approving a consultation and no further testing. What to do?? Our G.P. has been very supportive in refering us to whatever specialist we wanted to see even when he didn't think it would result in any answers. How do I get him to push the limits with the insurance company and get my husband evaluated at a top-notch university hospital or clinic??
Freddie, Could you tell me a little more about your symptoms and your experiences that lead you to believe he has a B-12 deficiency.
Your husbands case is very complex. The persistent symptoms and severe balance issues seem very distressing to your husband. I think an evaluation by a otoneurologist would be helpful. We have two excellent otoneurologists, Drs John Oas and Neil Cherian. It sounds like you have had a very extensive evaluation. If this has not been done at a large academic center, then a second opinion would be recommended. Good Luck.
Your husband sounds just like me prior to May 21,2003. It sound like he in an extremely severe methylB12 (the active form of B12) deficiency crisis.
Every symtom you list is a methylb12 deficiency sign without the anemia. The serum test so adequte B12. That is giving a false picture. Check his MMA and serum homocystine. If I were you I would find a healthfood store that is open and go get a bottle of Enzymatic Therapy Bioactive B12 1000mcg methylcobalamin (1st choice so far) or Jarrow 1000 or 5000 mcg methylB12 (not all of us have tested it, some brands don't work the same). I didn't wait for testing and am glad I didn't. I might have died while waiting. And since there is no downside risk to methylB12 it's a harmless pragmatic test to try. With the severity of his condition, if he was like me he will know in 15 to 60 minutes that you have saved his life and changed it forever. Good luck
Every symtom you list is a methylb12 deficiency sign without the anemia. The serum test so adequte B12. That is giving a false picture. Check his MMA and serum homocystine. If I were you I would find a healthfood store that is open and go get a bottle of Enzymatic Therapy Bioactive B12 1000mcg methylcobalamin (1st choice so far) or Jarrow 1000 or 5000 mcg methylB12 (not all of us have tested it, some brands don't work the same). I didn't wait for testing and am glad I didn't. I might have died while waiting. And since there is no downside risk to methylB12 it's a harmless pragmatic test to try. With the severity of his condition, if he was like me he will know in 15 to 60 minutes that you have saved his life and changed it forever. Good luck
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