Aa
Undiagnosed - what now?
Long: Since noticing tremors requiring me to use both hands for steadiness
about 4-5 months ago, these have become worse in my whole body,
and other things started (word/letter reversal in writing and
speech, forgetting words, paraesthesias, light-headedness, ear buzz,
some headaches (often 1-sided @ base of skull), fatigue, weak-feeling
limbs, 'deep' pain as in fingertips, slightly curved pinkies,
the odd dry heave, sometimes lt. wheeze, crunching when massaging
some places (forehead,hands,etc.), sometimes hands miss (doorknob, itchy nose &c), eyes
seem a bit worse (~2 months),dry,& feel not open fully, 'senile'
things (trying to put key in non-key door etc.,etc.) - I'm 28!).
Neuro. tests pretty much normal bar brisk lower reflexes.
Tests normal: B12, ELISA Lyme, blood-mercury, SSEP (4 mo. ago), head CT, resting
EEG. Congenital nystagmus. Neuro guesses problem = posture
and _anxiety_, told me to come back in 6 mo. if much worse. (Her
predecessor in public health system suspected poss. MS.)
Any ideas for what to investigate or do at home for tests or
helping symptoms, please. Some mention my _very_old_ dental
fillings or CJD, fibro., pinworms in brain (would
show up on CT?), liver, etc., etc.; I need to narrow things down
and can't afford private health care. Thanks!
about 4-5 months ago, these have become worse in my whole body,
and other things started (word/letter reversal in writing and
speech, forgetting words, paraesthesias, light-headedness, ear buzz,
some headaches (often 1-sided @ base of skull), fatigue, weak-feeling
limbs, 'deep' pain as in fingertips, slightly curved pinkies,
the odd dry heave, sometimes lt. wheeze, crunching when massaging
some places (forehead,hands,etc.), sometimes hands miss (doorknob, itchy nose &c), eyes
seem a bit worse (~2 months),dry,& feel not open fully, 'senile'
things (trying to put key in non-key door etc.,etc.) - I'm 28!).
Neuro. tests pretty much normal bar brisk lower reflexes.
Tests normal: B12, ELISA Lyme, blood-mercury, SSEP (4 mo. ago), head CT, resting
EEG. Congenital nystagmus. Neuro guesses problem = posture
and _anxiety_, told me to come back in 6 mo. if much worse. (Her
predecessor in public health system suspected poss. MS.)
Any ideas for what to investigate or do at home for tests or
helping symptoms, please. Some mention my _very_old_ dental
fillings or CJD, fibro., pinworms in brain (would
show up on CT?), liver, etc., etc.; I need to narrow things down
and can't afford private health care. Thanks!
A lot of your symtoms are those of the methyB12 (methylcobalmin, the active form of B12) deficiency neuropatic symtoms. Most of your symtoms fit into that. MethylB12 is healing to the nerves and harmless. A small bottle costs about $8.00 at the healthfood store. My whole life changed by putting one of those 1000mcg sublingual tablet under my tongue. I had been taking cyanocobalamin for years.
Sorry taking time to return. My hopes of a Doc w/ compassion was
traumatizing. There must be something in the AZ. water! I know
I have to get out of Dodge! I learned a new term for folks. PC.
Not computer. This guy got me in a room & started calling me
mentally ill. Said he checked me out & found I had seen others.
"We don't go against our own". He refused my typed info & MRI-
reports. I was verbally abused. Said I needed a shrink. I saw a
Dr. a yr. ago in a different city who was a NUT too. That guy
was in the `same' PC (partner corp.) 11 Neuro's all save money
on insurance by belonging to this PC. If PC is on a bs. card but
no other names, means they can bring you up in a computer & know
you've been elsewhere. What happened to the `Oath'? I was harmed
emotionally. Why not phone w/ a conflict-of-interest? He said it
was alittle mistake. I ran out & he made sure others heard that
I get help before I hurt someone? Later, our State Board said he
had the right to refuse service like any other Bs! Now I know why
I can't find a Dr. My ENT surgeon also notified me he would not
ck. my earache but would keep me w/ follow-ups. No reason! I ck'd & he's in a PC w/ other docs that missed my problem. I still have the earache. I mention his name & no appt! I'm on a
strange planet. No wonder we're on the Net! I'm back to self-
diagnosing. Anyway, you need an Otolaryngologist & a Coronal CT.
CT Ethmoid/Maxillary looked strange & I couldn't read films. I
was told slight infection & dependant fluid. Nothing serious. I
didn't push them enough. If unilateral, always biopsy! That lost
time thru my body into an autoimmune disorder of unknown. I'm so
sick of NO or I DON'T knows. I'm a nice person. Feel lucky if ya'
have a listener but don't waste time. The trigimenal-nerve is
effected if infection hits those sinuses. That bothers the Vth.
crainial-nerve that can give mixed brain signals. Atleast go ck.
out the maxillary. MRI is not best in this case. CT will look
closer & w/o need of dye. If infection is there, it causes tissue
inflammation & triggers strange sysmptoms. Rashes, muscle pain,
confusion can happen from a sinus infection left untreated. Good
luck. I'll ck. back. Thanks for listening.
traumatizing. There must be something in the AZ. water! I know
I have to get out of Dodge! I learned a new term for folks. PC.
Not computer. This guy got me in a room & started calling me
mentally ill. Said he checked me out & found I had seen others.
"We don't go against our own". He refused my typed info & MRI-
reports. I was verbally abused. Said I needed a shrink. I saw a
Dr. a yr. ago in a different city who was a NUT too. That guy
was in the `same' PC (partner corp.) 11 Neuro's all save money
on insurance by belonging to this PC. If PC is on a bs. card but
no other names, means they can bring you up in a computer & know
you've been elsewhere. What happened to the `Oath'? I was harmed
emotionally. Why not phone w/ a conflict-of-interest? He said it
was alittle mistake. I ran out & he made sure others heard that
I get help before I hurt someone? Later, our State Board said he
had the right to refuse service like any other Bs! Now I know why
I can't find a Dr. My ENT surgeon also notified me he would not
ck. my earache but would keep me w/ follow-ups. No reason! I ck'd & he's in a PC w/ other docs that missed my problem. I still have the earache. I mention his name & no appt! I'm on a
strange planet. No wonder we're on the Net! I'm back to self-
diagnosing. Anyway, you need an Otolaryngologist & a Coronal CT.
CT Ethmoid/Maxillary looked strange & I couldn't read films. I
was told slight infection & dependant fluid. Nothing serious. I
didn't push them enough. If unilateral, always biopsy! That lost
time thru my body into an autoimmune disorder of unknown. I'm so
sick of NO or I DON'T knows. I'm a nice person. Feel lucky if ya'
have a listener but don't waste time. The trigimenal-nerve is
effected if infection hits those sinuses. That bothers the Vth.
crainial-nerve that can give mixed brain signals. Atleast go ck.
out the maxillary. MRI is not best in this case. CT will look
closer & w/o need of dye. If infection is there, it causes tissue
inflammation & triggers strange sysmptoms. Rashes, muscle pain,
confusion can happen from a sinus infection left untreated. Good
luck. I'll ck. back. Thanks for listening.
I still have not been diagnosed. Doctors say it could be possible. I have had the usual tests EMG Nerve Conduction and a MRI. The MRI showed nothing and the first EMG not conclusive. So I had another EMG and they said that there was Muscle loss.
I have a few cramps but no twitches. I have foot drop and inflamation above my knee cap. On my knee cap the nodes stick out and the knee cap of my other knee is smooth.
To me this more like Osteoarthritis. I have dull pain in my hands and I an feel the nodes rising in some of my fingera.
So I will be asking for further tests.
I started with a limp last year, with pain which never cleared up on my knee. Now it has progressed to foot drop.
I have to use a walking cane for support, as my knee was giving way.
I have a few cramps but no twitches. I have foot drop and inflamation above my knee cap. On my knee cap the nodes stick out and the knee cap of my other knee is smooth.
To me this more like Osteoarthritis. I have dull pain in my hands and I an feel the nodes rising in some of my fingera.
So I will be asking for further tests.
I started with a limp last year, with pain which never cleared up on my knee. Now it has progressed to foot drop.
I have to use a walking cane for support, as my knee was giving way.
Sorry I didn't reply sooner. I was on holiday, which I thought would help me if my problem were 'nerves'. It hasn't appeared to help, and I'm trying to fight feelings of being incredibly scared.
Now I'm doing more senile things, more of the 'dyslexia', and having more jaw and other pains and tremores. A few 'buzzings' in my left hand. MRI did show some maxillary sinus congestion and some ethmoid sinus thickening of air cells on the right side. But what kind of dr. to go to now. Id on't have a visible tumour or anything. Waiting 6 months will be worse than waiting 2 months to get a post on here. At least the doctor did sort of respond.
You mention 3 things that help you. Unforanatesaly, theay are all prescribpation meds. And I feel a little hyponotsiazed a lot of the time anyway, as if my brain isn't with me either. I want to wake up!
I didn't have enough space to describe everything in 25 80-caharacter lines but had really hoped there would be an obvious way to link all the symptoms and answer this. Agggh. Please do let me know how things go with you, though I don't know if I'll keep checking this board as it seems mostly for people who are sometwhat more diagnosed than I am.
Now I'm doing more senile things, more of the 'dyslexia', and having more jaw and other pains and tremores. A few 'buzzings' in my left hand. MRI did show some maxillary sinus congestion and some ethmoid sinus thickening of air cells on the right side. But what kind of dr. to go to now. Id on't have a visible tumour or anything. Waiting 6 months will be worse than waiting 2 months to get a post on here. At least the doctor did sort of respond.
You mention 3 things that help you. Unforanatesaly, theay are all prescribpation meds. And I feel a little hyponotsiazed a lot of the time anyway, as if my brain isn't with me either. I want to wake up!
I didn't have enough space to describe everything in 25 80-caharacter lines but had really hoped there would be an obvious way to link all the symptoms and answer this. Agggh. Please do let me know how things go with you, though I don't know if I'll keep checking this board as it seems mostly for people who are sometwhat more diagnosed than I am.
Thank you for your reply. I was really hoping there would be
some magic explanation for all of this, whether a neurological
one or not. So many of the sx seem weird (the zit-like spots
that are tender to the touch and have appeared on neck, scalp,
and now one on the back of my hand seem to occur when there's a
bit of sharp pain, for instance; I'd really worry if there were
more than about a dozen of them in total) that I'd hope they'd
point to something obvious. The cognitive problems and weakness&
fatigue are worst.
As long as the routine blood tests would detect liver issues,
it's good I can rule that out at least.
While my albinism means nystagmus has been with me all my life,
I have noticed some eye weirdness of late but can't pin it down
beyond 'fogginess' and sometimes sharp pains at the eye corners.
Other symptoms I didn't mention in my first post, for want of
space, include the odd jerk of a limb when I'm sitting still
rather than actually asleep. This isn't as worrying as some.
I'll try to manage for the next six months without letting
worry feed my symptoms. With the progression, I do hope nothing
will suddenly go very wrong. That's one thing I want to rule out.
some magic explanation for all of this, whether a neurological
one or not. So many of the sx seem weird (the zit-like spots
that are tender to the touch and have appeared on neck, scalp,
and now one on the back of my hand seem to occur when there's a
bit of sharp pain, for instance; I'd really worry if there were
more than about a dozen of them in total) that I'd hope they'd
point to something obvious. The cognitive problems and weakness&
fatigue are worst.
As long as the routine blood tests would detect liver issues,
it's good I can rule that out at least.
While my albinism means nystagmus has been with me all my life,
I have noticed some eye weirdness of late but can't pin it down
beyond 'fogginess' and sometimes sharp pains at the eye corners.
Other symptoms I didn't mention in my first post, for want of
space, include the odd jerk of a limb when I'm sitting still
rather than actually asleep. This isn't as worrying as some.
I'll try to manage for the next six months without letting
worry feed my symptoms. With the progression, I do hope nothing
will suddenly go very wrong. That's one thing I want to rule out.
Hi Alice. I relate to your problems. I'm so similar. Some things
are perfect match. Sad we're on a website instead of @ MD's. I
thought if you got through to Post, they respond here? I've been
unlucky getting in. Your post is perfect & `I' don't use any aspartame. My problem started 10 yrs. ago w/ my head feeling like a balloon.In short, 18 Dr's later, I got smart & got copies of everything including a ck-out of MRI films. My high IQ was
going. An undiagnosed ear infection went through bone to my rt. maxillary. 2 Dr's dismissed the visible tumor as infection. I
found ENT to do Endo. surgery. 4 surgeries later, cancer is in
ck. Follow-ups rest of life. Pre-surgery: rashes, tremors,
hands/forearms looked old/wrinkled. Told Dr. I had turned dyslexic in communicating. My words reversed when talking off-
on. No longer an Optician. I'd reverse +/- symbols. Shattered!
Milk in the cupboard/sugar was in frig. I have notes through hse
to remind me to re-ck things. My theory is a virus of unknown is
going on. It stopped my brain from correct decisions. It told
my ear not to work, hence infection & worse. MRI's & bloodtests
don't show everything. Can't wk./drive. Confusion & anxiety but
pushing for answers. Rheum.MD, always shows pos.ANA w/titer. He
is puzzled over fingerpads numb then hurting, then swollen up to
shriveled w/cuts. Dark red 1/2 moons cover nails base. Said it
represented an illness. He can't remember which! I pushed for a
new Brain/C-spine MRI. Microvascular & scattered foci on Brain.
Don't worry about the white stuff! C-spine now has bulges, cysts
& protrusion w/narrowing. I have one-side neck pain w/crunches.
I have an autoimmune of unknown w/ all this & he said wait till
I'm worse! I cry/scream & feel worse. Stress activates stuff. I
have a new Neuro I'm trying next week. I'm almost positive that
it's nerve damage or compression in the spine. BP is up/dwn &
now eyes burn daily. Neg. on allergies. I was once called Fibro-
Brain by MD. Take more Estrogen! We're lost & afraid while they
joke. Well I'm not old or brain-dead yet. Control stress & in-
flammation, you'll do better. My head predicts weather changes.
I struggle daily w/fatigue. No Fibromyalgia & Lupus they say.
I research alot & found one thing that the 3 things that help my
problems have in common. They regulate the Chloride Ion Channel
in vessels. Ambien for sleep. 1mg Xanax mid-day. Lortab for pain.
Narcotics & Benzodiazepines all are slight hypnotics. They stop
jerks/scribbles. LOW dose & only per need, have they worked. Dr.
said I should be loopy yet it clears the problems. He has no idea
why it works. Maybe my Neuro will also be a good chemist! I'll
let you know & hope others read our plight & respond. Stay tuff!
Hope no repeat. Didn't get the Confirmation on my `click once' &
it's been 2 minutes.
are perfect match. Sad we're on a website instead of @ MD's. I
thought if you got through to Post, they respond here? I've been
unlucky getting in. Your post is perfect & `I' don't use any aspartame. My problem started 10 yrs. ago w/ my head feeling like a balloon.In short, 18 Dr's later, I got smart & got copies of everything including a ck-out of MRI films. My high IQ was
going. An undiagnosed ear infection went through bone to my rt. maxillary. 2 Dr's dismissed the visible tumor as infection. I
found ENT to do Endo. surgery. 4 surgeries later, cancer is in
ck. Follow-ups rest of life. Pre-surgery: rashes, tremors,
hands/forearms looked old/wrinkled. Told Dr. I had turned dyslexic in communicating. My words reversed when talking off-
on. No longer an Optician. I'd reverse +/- symbols. Shattered!
Milk in the cupboard/sugar was in frig. I have notes through hse
to remind me to re-ck things. My theory is a virus of unknown is
going on. It stopped my brain from correct decisions. It told
my ear not to work, hence infection & worse. MRI's & bloodtests
don't show everything. Can't wk./drive. Confusion & anxiety but
pushing for answers. Rheum.MD, always shows pos.ANA w/titer. He
is puzzled over fingerpads numb then hurting, then swollen up to
shriveled w/cuts. Dark red 1/2 moons cover nails base. Said it
represented an illness. He can't remember which! I pushed for a
new Brain/C-spine MRI. Microvascular & scattered foci on Brain.
Don't worry about the white stuff! C-spine now has bulges, cysts
& protrusion w/narrowing. I have one-side neck pain w/crunches.
I have an autoimmune of unknown w/ all this & he said wait till
I'm worse! I cry/scream & feel worse. Stress activates stuff. I
have a new Neuro I'm trying next week. I'm almost positive that
it's nerve damage or compression in the spine. BP is up/dwn &
now eyes burn daily. Neg. on allergies. I was once called Fibro-
Brain by MD. Take more Estrogen! We're lost & afraid while they
joke. Well I'm not old or brain-dead yet. Control stress & in-
flammation, you'll do better. My head predicts weather changes.
I struggle daily w/fatigue. No Fibromyalgia & Lupus they say.
I research alot & found one thing that the 3 things that help my
problems have in common. They regulate the Chloride Ion Channel
in vessels. Ambien for sleep. 1mg Xanax mid-day. Lortab for pain.
Narcotics & Benzodiazepines all are slight hypnotics. They stop
jerks/scribbles. LOW dose & only per need, have they worked. Dr.
said I should be loopy yet it clears the problems. He has no idea
why it works. Maybe my Neuro will also be a good chemist! I'll
let you know & hope others read our plight & respond. Stay tuff!
Hope no repeat. Didn't get the Confirmation on my `click once' &
it's been 2 minutes.
Sorry I misread your post some. I blaim my brain.
Nope. My local doctor simply sent me to the neurologist, who is now done with me for six months. Does all of this match lupus or just some? I can list other symptoms if it will help but would like to wait until the doctor who reads these boards has commented, so the addiontal comments aren't missed. One funny symptom is these tender spots that look a bit like zits but are tender lumps appear when there is pain of scalp, neck, or today the back of my hand. My ears and neck make noises more often, I have limbs or neck that jerk when I'm sitting or relaxing - this used to happen only when I was alsepp. There are sometimes catching (hard to move) in my thumb webs and jaws, for instance. Etc.
Have a doc give you a blood test for Lupus. It's ANA and Anti DNA, I'm pretty sure. Sorry I can't help more.
Jami
Jami
Although anxiety can certainly play a role in your symptoms and can even be the cause of them, it's important to rule out correctable medical causes for your symptoms. Blood work to look for thyroid disease, electrolyte disturbances, and vitamin deficiencies should be considered especially with your history of tremor. If you have abnormal liver enzyme function (would be seen in routine labwork) in the presence of a movement disorder such as tremor, a neurodegenerative disease called Wilson's disease is a possiblity. Nystagmus ( I know you said you were born with it, but if you weren't) with tremor points to a problem with the cerebellum, the part of your brain that helps you control movements.
I can't tie all of your symptoms together with one diagnosis and they don't all localize to one area of the nervous system, but at the very least, labwork should be done to rule out the things I mentioned above. As for the CJD or "pinworms??? in brain," if you did indeed have these conditions (which I don't think you do) you would be very very very sick.
Symptomatic treatment with counseling and medications for anxiety (if that's what you have) may be helpful and of course treatment for any underlying condition found to be causing your symptoms. Depending on what they think the tremor is from, if it's benign essential tremor, this can be treate with meds like primidone and propanolol. Good luck.
I can't tie all of your symptoms together with one diagnosis and they don't all localize to one area of the nervous system, but at the very least, labwork should be done to rule out the things I mentioned above. As for the CJD or "pinworms??? in brain," if you did indeed have these conditions (which I don't think you do) you would be very very very sick.
Symptomatic treatment with counseling and medications for anxiety (if that's what you have) may be helpful and of course treatment for any underlying condition found to be causing your symptoms. Depending on what they think the tremor is from, if it's benign essential tremor, this can be treate with meds like primidone and propanolol. Good luck.
Have you used aspartame (Equal, Nutrasweet) and if so, how much and for how long?
In reply to Mysterious Stranger, almost all of my eating is done at
home from raw materials, and I don't drink sodapop or the like. All of this has started in the last few months, gradually getting worse, but there has been no change in diet or lifestyle accompanying it. I have other symptoms and comments that there wasn't room for in my question (e.g., my hands look old and I get 'joint catches' in thumbs, shoulders, etc.), but I'll wait before adding that info.
home from raw materials, and I don't drink sodapop or the like. All of this has started in the last few months, gradually getting worse, but there has been no change in diet or lifestyle accompanying it. I have other symptoms and comments that there wasn't room for in my question (e.g., my hands look old and I get 'joint catches' in thumbs, shoulders, etc.), but I'll wait before adding that info.
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