I am going to llmd next week and need to type up my own list but thought it would help me to remember things to look at that post again.. I had ALOT of the same symptoms,, of course not all the same but it hit the nail on the head.

I tried to search for it,, but came back with nothing.

I would appreciate a link if anyone can remember where it is.

Thanks

It hit home for me as well. I've since started treatment because it shook me out of my denial.

Hope this helps.

It will sure help me when I am typing up my summary for the llmd.

Thanks Again,, and hey... your up awful late too huh??

Yeah, I can never sleep.. except when I need to be awake,, then it seems I am sooo tired. LOL

Thanks True,

Did someone say.. "..was really lengthy... I think it was TinCup who posted" it.

Who ME? LENGTHY posts?

Oh well..

As I always say.. why use only 10 words when you can babble out 450 instead?

And yes, I was up way too late as usual. grrr, I hate that. I generally feel better late at night. It really wreaks havok with my schedule, though.

Tincup ~ you crack me up.
Personally, I just keep writing until I hit on what I wanted to say. I can't seem to get to the point any onther way; mostly because I don't remember what the point was until I get there.

-----
Thought I would share this just in case others might benefit?

The problem I have found is that no one list actually explains what is going on with me. So using the standard lists as a guide often misses stuff.

This is my master list of symptoms that I can use to monitor my progress or lack there of...

When I am bad.. I have most of these... And I have had all of them at some point.

When I am feeling better.. I have less to check off the list.

Hope it helps and I encourage others to keep track of their symptoms.. if for no other reason.. research. This will be placed in my file of important papers along with my will.

Hopefully at autopsy time someone can use this info to help others?

You are welcome to adjust or modify it to suit your own needs if you would like to copy it.

*** NEURO/PSYCH

``Instant'' memory problem, forget in the middle of something

Do not think of things in advance of doing something that would be normal to most

Run into walls or doorways, misjudge spaces and distances

Tip or fall over while walking or standing

Misjudge distances to place items

Get distracted and wander away from tasks

Repeatedly bumping into things with the left side of the body

Dropping things from hands

Forget something is being carried in hand till hand is needed again for something else

Lost in my own neighborhood

Distraction or loss of focusing

Feels like I have to tell my arms to move when I need them to do something or reach out

Feels like I need to tell my legs to move and in what direction

Delay in ``thinking... and then doing''

Not recognizing that colors are all around... only seeing shades of black, gray, and white

Not seeing 3 dimensional, things appears flat, or one sided

Ground feels like it is moving, rippling, swaying- or like I am walking on a boat

Words on written page look like this : word (The end of the word looks like the print
is smaller than the beginning)

Words sway or bulge out from the page and wave or move on the page

Problem with multiple concepts or doing two things at once

Inappropriate words.. say ``pink'' when looking at an obvious ``blue'' object

Inappropriate words when speaking- like saying tomorrow instead of yesterday

Saying words messed up.. Sountain Foda

Personality changes- better or worse

Hostile for no reason or fits of nasties or yelling

Crying for no reason

Handling stress poorly

Saying numbers wrong or not being able to say the name of the number being seen

Word, letter, or number reversals when writing

Writing letters backwards

Abnormalities of taste

Abnormalities of smell

Heightened sensitivity to vibrations or movements

Sensations of falling forward or backwards

Walking with an unsteady gait, stopping to be balancing along on table edges, walls, etc

Walking stiff legged and like a monster or a severe waddle

Legs giving out while walking

Knee buckling for no reason

Emotional disaster days

Feeling apart from everything

Intrusive obsessive thoughts

Intrusive images or sounds

Trouble finding words needed to communicate
Trouble reading and understanding what was read

Feel like my mind is gone or going fast

Panic attacks

Obsessive- compulsive stuff

Severe anxiety

Constant anxiety

Objects seem distorted, side ways or mis-shaped

Can't make a straight line

Vivid nightmares or repetitive thoughts at bedtime

Hallucinations

Loss of drive and ``want to''

No imagination

Perceived alteration of limb size and shape

Feeling like there is a delay between an event happening and knowing it happened

Feels as though time is standing still

Feels like there will be no future or ``later''

No idea if I have responsibility of anything other than what is in my face at the time

Forget family exists unless they are there in my face

Feels like sinking sensation as though legs (or car wheels) are beneath ground level

Feelings are dull and blunted

Capacity to experience most emotion is lost

Having to act as if playing a ``part'' to get something done

Ideas are in my mind but I see them from an outsiders view

Withdrawn and anti-social

Tunnel/corridor vision

Suicidal thoughts

Thoughts of wanting to quit

Thoughts of wanting to die but not have to kill myself

No smiling

Fear that is not justified

*** SKIN

Itching

Bumps

Varying shades of red on ear lobes

Rash ACA on left foot and ankle

Rash ACA on right foot and ankle

Rash ACA on right hand and up right arm

Rash bumps (white calcium, here and gone later) under top layer of skin near ACA areas

Rash white bumps on chest along breast bone and below

Blue discoloration on palms of hands

Blue discoloration on ankles and lower legs

Pink discoloration on feet and lower legs

Pink knuckles and hands

White shinny fingers with swelling

White shinny feet with swelling

Fish net rash on lower legs

Fish net purple/blue rash on thighs

Fish net rash (pink and purple) on breasts

Lyme rash reappeared (ECM/ACA) on breast/stomach/side above rib cage (up to 10
inches)

Smaller ECM (up to 5 inches) on left side ribs reappear (bright red, raised, warm, slightly
scaly, well defined edges)

Pinkish rash which looks like tiny spider webs but underneath upper skin level

Pink rash across butt looks like a faded bulls eye rash

Bruising easily

*** MUSCLE PAIN IN BODY

Muscle pain or spasms/cramps in head on surface

Muscle pain or spasms/cramps in neck or stiff neck

Muscle pain or cramps in upper back

Muscle pain or cramps in low back

Muscle pain and/or cramps in lower arms or upper arms

Patches of burning pain along outer sides of legs

Inside knees soreness and pain

Connective tissue pain or soreness in arms

Connective tissue pain in legs

Connective tissue pain in trunk

*** TEMPERATURE

Delayed response to external temperature changes. Example: After being in very hot
weather no reaction to the heat...then after 20 minutes in air conditioning, then start
sweating as if THEN it is an appropriate response.

Fever noticed

Lower body temperature

Cold hands and feet in a warm environment

Night sweats

Day sweats

Inordinate amounts of sweating

Break out of sweats in flashes for no reason

Sweating on left OR right side only

Mini sweats on face and upper body only

Feeling cold once out of the cold environment- delayed reaction

Top1/2 body (head to toe) very cold while laying on left side

Top 1/2 body (head to toe) very hot while laying on right side

*** NUMBNESS, TINGLING, PAIN

Can't lay on wrinkled sheets without it being very painful and feeling like I'm being
bruised

Need pillows between legs, knees, and ankles so they won't touch, and under my arm so
it won't rest against body and cause pain

Wicked buzzing/tingling all over body, sporadically

Lower arm hurts where my arm isn't (Phantom pain?)

Pain in right and left sides just below rib cage, tingling and burning

Entire rib cage pain (severe) - the tissues in between the ribs burning like on fire

Neurological pain (burning hot ``cheesecloth'' pattern pain) along left trunk, outside of
left leg, left side of face and neck, left rib cage, left shoulder and left arm

Painful to touch skin anywhere, can't put on clothing without pain if it touches me

Face numb on left side. Right side won't react to movement commands

Lower lip numbness and tingling...like with Novocain

V shape crushing pain from both ears to back of lower neck

Tenderness (extreme) on leg bones (shins)

Knots in muscles along both arms and legs..too tender to touch even lightly

Knees tender and stiff or sharp pain in the back knees

Numbness in arms, right or left

Tingling in elbows- right or left, like funny bone has gotten ``stuck''

Stabbing pains random, sharp, violent

Pinprick pains, random

Twitching of facial muscles or eyes

Tingling of the nose, cheek or face

Drawing up of arms towards chest

Tendonitis type pain in elbows

Carpal tunnel syndrome pain or wrist pain

*** HEAD/NECK PAINS

Every few weeks brain swelling feeling- lasting how many days

Face droops on one side on/off

Bones in neck make a dry clunking sound if and when muscles give out, especially on the
left side deep into chest area

Neck swollen and tight/hard and very painful

Can't turn head from side to side without pain, and it gets stuck and won't turn

Hard to put ear towards shoulder

Crushing pain in head in the outer layer

Squeezing pain in head 2nd layer in

Hard knots along base of skull- right or left

Twisted muscles on head so tight they feel like a taught banjo string

Tender or sore spots on head

Bulging on top of head in ``soft spot''- like a balloon is in there

Hard tight knots on skull above jaws and ears

Feeling like head has ``corners'' because bones are ``out of whack''

Ice pick in ear sensation

***UNCONTROLLED MOVEMENTS

Whole body feels numb or disconnected and there is no pain during that time

Tremble? if trying to move faster than a snails pace.. an internal type of trembling

Vibrating feeling in the head and back of neck

``Jolts'' of something (feels like lightening) which thrashes body upwards and wakes me
out of a deep resting state...usually just as I am falling asleep

Poor balance

Close eyes and fall over

Can't see or function in the dark

Leg thrashing or jumping

Loss of coordination
Complete loss of bladder function

Clumsiness, stumbling

**** SLEEP PATTERNS

Late to bed because I can't sleep

Sleep too long once asleep

Waking too soon

Up repeatedly at night

Feel drugged or paralyzed upon waking

Don't feel rested after sleeping

Two hour minimum ``dead brain'' time upon wakening

*** SPEECH

Stammering speech

Slurring speech

Open mouth no words come out

Can't follow more than one person talking

Mouth does not co-ordinate with words

Refusal to speak because it is too difficult at the time

Big delay from having question asked of me and responding

Loose track of thoughts while speaking

*** MEMORY AND COGNITIVE

Long term memory loss- noticed more things missing?

Short term memory loss- better or worse?

Problems with numbers and sequencing

Can't remember my own phone number

Can't remember my birthday

Can't remember how old I am

Don't know the date

Forget to check mail for more than one week

Forget list to go to the store

Get so I don't know where I am

Forget where vehicle is parked

Lock keys in the car more than 8 out of ten times

Forget to take shoes in the car when going out

Forget coat, sweater, or clothing when going out

Get to town and forget why I'm there

Can't go from here to there without starting from a familiar place (must go the long way)

Rambling on in great detail while talking

Short attention span while doing things

Short attention span while listening or trying to read

Agitated at others while they speak for no reason except that I have to listen

*** BLADDER

Bladder hesitancy

Bladder frequency

Loss of bladder awareness

Urinary retention

Incontinence, dribble

Symptoms of UTI

Blood in urine- visible- or by test

Dark colored urine- like cola

Dark colored urine- like strawberry soda

Urine foamy- like soapy

Strong smell of ammonia in urine

Strong smell of urine

*** MENSES

PMS symptoms exaggerated

Early menopause symptoms

Spotting

Irregular time, early, late

Irregular amount of flow

Cramping/pain

Disturbed estrogen and/or progesterone levels

Loss of sex drive or too much

Bloating

Moodiness

Missed period

*** STOMACH, INTESTINES

Abdominal bloating

Abdominal pain and cramping like perhaps ulcers

Nausea

Vomiting

Spastic and painful colon and muscles inside colon painful

Colon spasm pain strong enough to wake me up from sleep

Stomach acid reflux

Indigestion

Loss of day time appetite

Every few weeks vomiting spells and headaches for week or more

*** EYES

Photosensitivity to certain kinds of light, such as:

Flickering light by fluorescent lights- causing panic attacks, misery

TV or computer screens sensitivity

Headlights of oncoming cars or shining reflective lights hurt and confuse

Swelling around eyes and eye lids

Eyes water for no reason and light makes them water more and hurt

Blurry vision

Double vision

Floaters

Yellowish or white discharge from eyes

Eye pain

Left eye can't turn to the left

Dark circles (sometimes purple) under eyes

Transient blindness

Sensations that the light is fading out

Argyll-Robertson pupil- left side

Unequal pupils

Pupils don't close together at the same time

Sunlight hurting eyes to the point of pain, tears, dizziness, and nausea

*** HEART

Blood pressure too high or low (max and min-190/96 high to 40/nothing)

Irregular heart beat

Fast pulse, weak, thready

Thudding or thumping heart beats here and there

Squeezing chest pain

Someone standing on my ribs feeling

Like bra is too tight feeling

Skipping beats or dancing

Heart beats hard with light activity

Fluttering heart while laying down at night or while trying to get up in the morning

Must move holding onto things and only from chair to chair

*** ALLERGIES AND SINUS

Food allergies- 58 different ones- any better/worse

Sinusitis

Postnasal drip

Allergic or chemical hypersensitivity's

Soaps, gas, fumes, pine trees, perfumes, new car interior, new clothes smell, candles, etc

*** HAIR AND FINGERNAILS

Hair loss patches or general thinning

Hair growing faster than normal

Fingernails break easily and loose strength

Fingernails growing fast and strong

*** TMJ

Ice pick type pain in one ear or the other

Jaw pain like a severe tooth ache

Clenching teeth day or night

Jaw popping out of joint

Jaw overlapping at joint

Jaw pain R or L

Tooth pain- upper- lower- right- left

Lip numbness or tingling

Tongue loss of strength or movement

Difficulty swallowing or chewing

Gums swelling and fluid filled pouches along bones and gums

*** BONES

Water on the knees or knee pain

Bone pain anywhere

Gout-like pain in toes

Dislocating joints without reason from muscle spasms

Bone pain in legs

Hip pain in joints or bones

Hip bones very tender to touch

Feels like one hip is fused with the other.. not two separate ones

Wrist pain, sharp, on and off, either or both wrists

*** LYMPH NODES AND GLANDS

Swollen glands in neck or ears

Swollen lymph nodes along breast bone

Swollen nodes in groin

Swollen nodes in arm pits
Other swollen lymph nodes/glands

Swollen, puffy, painful spleen. (Yes, I CAN tell...had it before several times)

*** LUNGS AND CHEST

Light cough

Pressure in upper chest, below the center of the neck. In upper sternum and across from shoulder to shoulder

Difficulty breathing.

Shortness of breath feeling? like not getting enough air or like the diaphragm is not wanting to move on its own

Hyperventilating spells if sitting or standing upright that are severe enough to seek medical assistance

Shortness of breath

Rib soreness and pain or muscle spasms

Feeling as if I have to remind myself to breathe

Ribs twisted and painful

*** EARS AND HEARING

ALL noise startling and annoying to the point of maddening

When phone rings I jump, badly startled

Pain in/behind right ear. Pull outside of ear- something breaks loose and drains inside
my head. Like ice pick pain shooting and stabbing. Extremely bad pain

Walking sideways when trying to go straight

Can't watch TV or understand it or I don't have the attention span to follow it

Strain to see TV and it hurts eyes and/or ears

Furnace running and refrigerator running noise bad and noticeable

Ear pain

Can tell music is on, but don't ``absorb'' it

Can't listen to the pitches in women's voices sometimes without wanting to scream

Ear buzzing or ringing

Voices sound faint or distant

Hypersensitivity to sound

Noises are loud and echoing

Loss of hearing

*** SWELLING

Feels like a balloon is in my skull instead of a brain. Seems to feel swollen and
``bulging'' and as if it pushes my head bones from the inside and there are bubbles trying
to pop out but they can't

Swollen jaw and sinus area on right with extreme pain. Hurts to touch even lightly

Swelling and pain behind the ears, mostly right side.

Jaw bone areas swell with fluid pouches and feel raw

Bathing cap feeling across entire head, tight, crushing headaches

Swollen right foot- elephant size...not normal edema

Legs swell from knees down and turn very white

Ankles and feet swell

Nothing swells and feet turn very white with a bluish tint in places

One arm ice cold and tingling or numb..especially right upper arm on the back side..
other arm not as cold and numb, sometimes even warm while other one is cold

*** OTHER STUFF

Sore or scratchy throat, especially one-sided

Voice changes while speaking

Hypoglycemia like feelings

*** FATIGUE/TIRED

Weak and unable to stay up for more than 2 hours at a time

Extreme weakness in body

Hard to hold head upright

Movement is going from one chair to the next before exhaustion and having to sit down

Can't seem to catch breath

*** EATING HABITS

Fix food and forget to eat it

Miss meals totally because of forgetting

Very thirsty, as usual or less intake of fluids

Weight gain or loss

Chocolate, salt, sugar, or other cravings

Food restrictions

*** YEAST

Yeast Infection mouth

Tongue splitting open

Not able to taste food

Vaginal yeast infection

IP: Logged
lla2
Frequent Contributor

Posts: 4604
From: saunderstown, ri Usa
Registered: Apr 2002 posted 01 September 2002 21:46 ��� ���� �� ��
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wow tincup!