neurosarc: Has anyone NOT had Bell's Palsy type symptoms

I am curious about whether any of my Neurosarc friends have had the Sag in the side of the face or not. If not, have you had any changes in the side of the face? If so, can you describe it to me?

Thanks so much,

Joe

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yupssesa,

I replied to your email... go to the ER now.

bigjoe

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HI Salt,

Have you ever had a test for Lyme disease? That being able to hear a pin drop in the next room (hypercussis) is a MAJOR symptom. So are musical halucinations.

When I was hospitalized with hypercalcemia due to sarcoid in 2001, I had a tick bite on my leg. They said it was a spider bite so I never got the testing for Lyme.

At the time, I had some type of facial numbness that would sweep upon me in episodes. I couldn't speak, eat, or swallow during these episodes. One group of docs said sarcoid and the other said this symptom was epilepsy.

I don't live in an Lyme endemic area but live in a Great Lakes state. Now that I've learned a lot about Lyme, I think anyone with Bell's Palsy type symptoms should get some testing done regardless of where they live.

Don't bother with an Elisa test. Those are 85% inaccurate. The testing for Lyme is very poor. They are only checking for antibodies to the Lyme bug. Some people don't make antibodies because their immune system is so overwhelmed by the bacteria.

Go straight to the Western Blot and take the results to a LLMD (Lyme literate medical doc). Most LLMDs will run serial Western Blots over a time frame to look for changing antibodies. That's a sure sign of infection.

It's very possible to have sarcoid on top of Lyme and other coinfections transmitted by ticks.

Here is a symptom quiz from CanLyme:

PRINT AND CIRCLE ALL YES ANSWERS ( 20 yes represents a serious potential and Lyme should be included in diagnostic workup )
Symptoms of Lyme Disease
The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)
Rash at site of bite
Rashes on other parts of your body
Rash basically circular, oval and spreading out (more generalized)
Raised rash, disappearing and recurring

Head, Face, Neck

Unexplained hair loss
Headache, mild or severe, Seizures
Pressure in head, white matter lesions in brain (MRI)
Twitching of facial or other muscles
Facial paralysis (Bell's Palsy, Horner's syndrome)
Tingling of nose, (tip of) tongue, cheek or facial flushing
Stiff or painful neck
Jaw pain or stiffness
Dental problems (unexplained)
Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose

Eyes/Vision

Double or blurry vision
Increased floating spots
Pain in eyes, or swelling around eyes
Oversensitivity to light
Flashing lights/Peripheral waves/phantom images in corner of eyes

Ears/Hearing

Decreased hearing in one or both ears, plugged ears
Buzzing in ears
Pain in ears, oversensitivity to sounds
Ringing in one or both ears

Digestive and Excretory Systems
Diarrhea
Constipation
Irritable bladder (trouble starting, stopping) or Interstitial cystitis
Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

Musculoskeletal System
Bone pain, joint pain or swelling, carpal tunnel syndrome
Stiffness of joints, back, neck, tennis elbow
Muscle pain or cramps, (Fibromyalgia)

Respiratory and Circulatory Systems
Shortness of breath, can't get full/satisfying breath, cough
Chest pain or rib soreness
Night sweats or unexplained chills
Heart palpitations or extra beats
Endocarditis, Heart blockage

Neurologic System
Tremors or unexplained shaking
Burning or stabbing sensations in the body
Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
Pressure in the head
Numbness in body, tingling, pinpricks
Poor balance, dizziness, difficulty walking
Increased motion sickness
Lightheadedness, wooziness

Psychological well-being
Mood swings, irritability, bi-polar disorder
Unusual depression
Disorientation (getting or feeling lost)
Feeling as if you are losing your mind
Over-emotional reactions, crying easily
Too much sleep, or insomnia
Difficulty falling or staying asleep
Narcolepsy, sleep apnea
Panic attacks, anxiety

Mental Capability
Memory loss (short or long term)
Confusion, difficulty in thinking
Difficulty with concentration or reading
Going to the wrong place
Speech difficulty (slurred or slow)
Stammering speech
Forgetting how to perform simple tasks

Reproduction and Sexuality
Loss of sex drive
Sexual dysfunction
Unexplained menstral pain, irregularity
Unexplained breast pain, discharge
Testicular or pelvic pain

General Well-being
Phantom smells
Unexplained weight gain, loss
Extreme fatigue
Swollen glands/lymph nodes
Unexplained fevers (high or low grade)
Continual infections (sinus, kidney, eye, etc.)
Symptoms seem to change, come and go
Pain migrates (moves) to different body parts
Early on, experienced a "flu-like" illness, after which you have not since felt well.
Low body temperature

Allergies/Chemical sensitivities
Increased effect from alcohol and possible worse hangover



Munch

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Hi Joe
When I was 31 I developed what they then called Bells Palsy with complete hearing loss in the left ear. Today, the docs are calling it Ramsey Hunt Syndrome. The onset of the facial paralysis was about five days and the hearing loss was done in a week. It took months to resolve and still to this day I have numbness in the left side of my face and tinnitus and hearing loss.

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had facial paralysis on left side of face which completely resolved after about 4-6 weeks, after a 2 week course of prednisone taper.
that was about a year ago--- but sill have strange sensations on left side of face., which seem to move from area to area. feels almost like a tugging or tightness. intermittent twitching in the eye--- which preceded this whole episode by about a year. i feel some residual facial muscle weakness which my friends/ family say they do not see. sometimes tear in left eye when eating.....ugggghhhhhh!!!!

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Hi everyone,
I get very numb on left side of my face the longest it has lasted in one go is about six days. Some days it will come and go many times or become more/less numb. At its worst I cannot feel anything from and including my left ear up to side of my nose.
Just like Salt says (above) my hearing comes and goes in my left ear, it feels like when you have been swimming and have water stuck in your ear but nothing will make it pop or clear. So everything sounds very muffled.
I have had dizzy spells too, was diagnosed twice with labrythnitis before I got the sarcoidosis dx. doc sent me to ENT and they did MRi then said I had an ACOUSTIC NEUROMA and had to go for second mri.... then they said there wasn't one after all... (am guessing what they saw the first time was actually inflammation??).
Few months ago my legs dissapeared from under me whilst going down some stone steps... ouch! It was strange feeling, no warning or anything.
I have become very clumsy and throw things around when just trying to grasp them.
I also get the creepy crawlies on my scalp which I others have mentioned on this site. Have dry eyes, and some scarring from 'shingles' on forehead and in left eye some years ago! This scarring has now been diagnosed by Dermatology as Sarc granulomas and I also have some on knees and back.
Have definate dx of lungs and skin. But so far I haven't pushed for the neuro dx as I find that one terrifying to say the least, although writing everything down on here makes it seem pretty obvious that I have it.
Have been getting even more breathless and some palpatations recently so doc did EKG at surgery, he said there were some irregularities consistent with thickening of the heart muscle so I have my first Cardio appointment on the 25th January......
Have I rabbitted on, sorry. Thanks for being there and my prayers are with you all :-) XX

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I had infact a facial palsy on both sides. The biggest problem was i couldnt keep my eye lids open anymore so i had to tape them up. And i drooled and had very teary eyes. It came slowley and was chronic. Before that i had acute Heerfordt without plasy. since I'm on Remicade it's gone.

David

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Hey bigjoe,
I have had neurosarcoid since 07'. The only change in my face was when the dr. put me on predisone. I started with 60 mg. and got a moonface. I am on 10mg and all the swelling is about gone. But I haven't had Bell's or anything like that. I have a ton of other stuff going on.

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