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Life With Chronic Illnesses – What It Does To My My Body

2 Jun

First off I’m sorry I haven’t posted or been active for a long time and might be away for a while again. Physically, mentally & emotionally there is just too much going on & I can’t keep up with this blog. I’m sorry I missed all the comments but I hope all of you are well & continue to fight. My spine has gotten worse since last post & I can still be paralyzed from the neck down at any time. I’ve been through a lot of bad & nothing good to share since my last post. Not trying to be negative but my bad luck continues. My parents are taking good care of me and my heart/BP issues are under control for now after nearly having a stroke & heart attacks 3 years ago.

Below are only some of the things I can think of that have happened to my body from all my illnesses. That includes; Lupus, nearly life Long Lyme disease, spinal issues, genetic issues, primary immune….etc.

Brain pressure, brain swelling
Cognitive issues, trouble finding words
Brain fog, forgetful
Long & Short term memory loss
Migraines, headaches
Hair loss in small patches from thyroid
Eyes hurt, vision get blurry, double vision
Eyes are dry daily
Eye lids burn
Eye spasms
Get seizures from pulsing lights
TV movie angles, unstable camera, blurry video strains my eyes
Teeth are severely sensitive to heat, cold, hard food
Gums hurt, have to eat or drink things at room temp
Chronic sinus inflammation, hard to breathe through nose
Sneeze attacks (unlike a normal sneeze)
Lymph’s in face sting, hurts, dull to sharp pain, electric shocks up chin
Charlie horses in my chin
My whole face burns bad every night
Fevers, sweaty forehead
Ears burn & sting, tinnitus or ringing & buzzing in ears
Mouth literally always dry & dehydrated, cotton mouth
Neck stings, shocks up neck, carotid artery pain
C-Spine I have severe spinal stenosis, close to paralyzed from neck down
Herniated, exploded discs in neck, pinched nerves, severe neck pain
Hard to turn my head, stiff neck, stabbing pain in back of neck
Sore throat, acid reflux, heart burn
Vomiting, nausea, gagging, dry heaves
Sensitive to smells
Pass out, seizures
Off balance, fall over, run into walls

Shoulders to Stomach
Shoulder & shoulder blade pain
Rashes on my back, chest
Chest pain, rib pain
Trouble catching my breath
Wheezing & coughing up stuff from lungs
Glands under armpits hurt
Arms have CRPS/RSD, skin on fire in both arms
Veins hurt in both arms
Carpal tunnel, wrist pain
Bowlers thumb pain
Tendons pain in hands
Charlie horses often in hands
Hands cannot open sometimes & cant move arms
Joint pain, bone pain, muscle pain all over
Lower to upper back have degenerative disc disease
Back has pinched nerves, stenosis in lumbar
Back pain is severe, lose ability to walk sometimes
Back goes out sometimes
Can’t bend over well
Walk with a limp, hard to walk
Heart problems, blood pressure problems
Hypertension, POTS
Loop recorder in my chest muscle
Organs hurt
Stomach pain, vomiting
Rash all over my back
Muscle spasms in both arms & my back
Hands severely sensitive to heat, cold
Involuntary movement in arms, hands, throw things
Tremors in hands
Finger nails hurt
Tightness in chest & tremors in chest

Stomach To Feet
Testicular torsion (once so far but phantom pain)
Thigh spasms
Charlie horses in my feet
Feet extra sensitive to touch, heat or cold
Joint pain, bad knees & hip
Right hip can’t sleep on in bed too much pain
Knees lock up when cold
Muscle, nerve pain down legs
Hyper sensitive in feet
Bottom of feet hurt
Pain from head to toe every single day since I was 5 years old
Bone infection in leg at 6 months old
Hard to walk
Haven’t been able to jog since I was a kid
Legs fall asleep a lot
Tingling in legs
If I walk more than 50 steps my leg begins to burn bad & my knee/hip

Neurosurgeon Visit And Lyme

11 May



Neurosurgeon Visit And Lyme

Last month my Neurologist told me my he found a new spinal cyst, more bulged discs and my spinal stenosis was worse. He told me I was one “small jolt away from be paralyzed from the neck down”. That’s enough to scare you. So I was a little nervous for my appointment yesterday with the neurosurgeon.

For the first time ever my neurosurgeon really surprised me with his answers and he was a really nice guy. I won’t bore you with how the long appointment went since he was running an hour behind. He was probably one of the nicest doctors I have since since this nightmare started.

The first thing my neurosurgeon asked me when he walked in was “did your kids do this pain chart’? (I posted a picture of it below) My pain chart circled the whole body and I filled in the various shapes all over the body. He said “there is no way your spine is causing all of these issues you must have an illness” and I told him about lyme disease. He said that makes sense.

So after going over some physical tests with my and my 2 CD of MRI scans he said my neck was worse. He said I have “hypermobility” and he can tell by my fingers. He measured the compression on my spinal cord and said that it wasn’t enough to cause he to perform emergency surgery. He seemed confused the whole time we talked.

He said I do not need surgery and I should be fine. He blames my paralysis and loss of ability to walk a couple months ago on lyme. Yep he actually told me he believes I am really sick and lyme is causing it all. I can’t believe a neuro said these words. So no surgery and no plates and screws. He said he can do the surgery but with all of the pain I have he said “what is the point you wouldn’t know if it helped anything”.

He recommends I go to a well known hospital and have a a community of doctors or meeting of the minds to figure out what is all wrong with me besides just lyme. He saw my medical records and each doctor has different diagnoses such as Fibro, Lupus, Lyme, CFS….. so he said I need Dr House in my corner who will figure out exactly what is going on.

He said I was a nice guy and he really hopes I can get some help. Which was very kind and doctors have never said that to me. He even talked about the 49ers with me. I was very pleased with the visit and happy I do not need surgery. Although it doesn’t cure the paralysis, radiopathy and pain at least he said it was the lyme and not my spinal cord for sure.

pain chart

My pain chart. My hand cramped or I would have marked more.

Got My MRI Results Tonight

15 Apr

This picture is from 2010 I don’t have a current one yet.


Got My MRI Results Tonight


Friday I went in to have an MRI of my C-spine and Thoracic Spine. My right hip and Lumbar have been hurting also but the doctor wanted to work from the top down first. About 1 hour and 45 minutes before the appointment I received a call that said I need to “rush to the imaging center asap doctors orders”. So my dad took me as fast as we could.

This is most likely my 4th or 5th MRI but my memory is bad. I laid on my back as usual and was sent all the way in the machine as expected. What I didn’t expect is the excruciating pain in my back laying on that table. It was mainly on my lower lumbar at the top of the hip/pelvis.

The pain was a radiating “toothache” type pain where it would not give up (which is not unusual with us spoonies). On a ill person’s pain scale it was at least a 10-12 where I was biting my lip, grunting and holding back from crying out loud. I had tears in my eyes and could barely talk back to the MRI staff as she asked me questions. I wanted so bad to move and get out of there but I learned from a bad 2.5 hour MRI experience in the past not to move one muscle or you have to do it all over.

When the “bleep, boop, arghhh, grrr, tock” sounds from the MRI machine ended I was so relieved. It was a little over and hour of not moving. For those that never had an MRI it is very easy if you can lay still and you are not claustrophobic which I am not.  The sounds will drive you insane though. I just never had so much pain while laying in one. The lady said “wow great job you must be a pro at this”. I went to stand up and could barely walk or see and ran into everything on my way out using the wall as a guide.


Around 7pm last night my Neurologist called with the results. I am still waiting for the Neuro surgeon to call me (the one who let it go this long). My Neuro doctor is about the only guy I really like as far as doctors and he even wrote “lyme disease” in my report without rolling his eyes.

The doctor literally said “Bryan I am worried, you do not do anything you need to stay on the couch and even if you get one bump you will have full paralysis”. He said since my last two MRI’s things look worse and the flattening of the spinal cord is worse. I also learned of a cyst on the spinal cord now which has me curious if it is lyme since mine has been in cyst form. The T-Spine also showed a bulging disc but not bad. My L-Spine is where most of the pain resides also so I know once I have that done it will show wear and tear.

Hi Bryan,
This is your MRI of the cervical spine repost as you can see you have degenerative changes and disc herniation at level C5-C6 and causing moderate spinal stenosis and flattening cord there is also mention about small cyst formation. The findings showed further mild progression from 8/10/2010 MRI of C-spine. Your thoracic spine also showed mild degenerative changes, but nothing serious,
My recommendation is same as I mentioned previously that is  to get consultation and treatment with Dr Schneiderman.
Dr. Suga
CLINICAL INDICATION: ICD-9 723.0. Cervical spondylosis, bilateral
upper extremity radiculopathy.
Comparison: August 10, 2010.
Technique: Sagittal T1, T2 and STIR sequences, and a
three-dimensional axial T2-weighted COSMIC sequence, through the
cervical spine.
Findings: The craniocervical junction is intact. The cervical
alignment is satisfactory. The vertebral body heights are
maintained. There is no bone marrow edema. Disc desiccation is
present at C2-C3 through C6-C7. There is early marginal
osteophyte formation and mild loss of disc space height at C5-C6
and C6-C7. The imaged portion of the posterior fossa content
reveals no mass effect. No intrinsic spinal cord signal
abnormality is observed.
Evaluation of the individual disc levels demonstrates:
C2-C3: Trivial disc bulge is present with a slight broad-based
left paracentral disc protrusion, without significant spinal
canal stenosis. There are mild uncovertebral degenerative
changes, and mild left-sided facet arthropathy changes are
present. No significant foraminal stenosis.
C3-C4: Uncovertebral degenerative changes are present
bilaterally, with mild left foraminal stenosis. Trivial disc
bulge is present without spinal canal stenosis.
C4-C5: Mild uncovertebral degenerative changes are present, with
mild left foraminal stenosis. Trivial disc bulge is present,
without spinal canal stenosis.
C5-C6: Moderate spinal canal stenosis is present as result of
disc bulge and a superimposed moderate-sized broad-based central
and right paracentral disc herniation. A small amount of
associated superiorly extruded disc material is present at the
central position. There is moderate cord effacement with
flattening and abnormal concavity of the anterior spinal cord
contour, and flattening of the bilateral posterolateral cord
contour is. The herniated disc has mildly increased in size and
the degree of spinal canal stenosis has mildly increased.
Uncovertebral degenerative changes cause mild bilateral foraminal
C6-C7: Borderline spinal canal stenosis as a result of disc
bulge. Uncovertebral degenerative changes narrow the left lateral
recess and mildly narrow the left neural foramen; left lateral
recess narrowing has mildly increased. No right foraminal
C7-T1: Normal.


Impression: Mild to moderate cervical degenerative changes.
Moderate spinal canal stenosis with moderate cord effacement at
C5-C6. Borderline spinal canal stenosis with left lateral recess
narrowing at C6-C7. Degenerative changes at C5-C6 and C6-C7 have
mildly worsened compared to the August 10, 2010 study. Stable
milder degenerative changes at other levels.


I know many of you have had this surgery and are waiting to have this surgery. I will stay positive and I know there is a good chance this will get rid of a lot of the pain, stiff neck, neuropathy, numbness, headaches….etc that have been bugging me from the discs. I will most likely consult with my LLMD but at this time the Neuro is telling me it is a must have and as soon as possible.

I think I have chosen that the fusion is not for me and I want TransCorporeal MicroDecompression (TCMD) on my neck if I qualify. It is done but just drilling a hole in your own bone and they fix the bulge through the hole instead of getting a new bone or plates and screws. It is said to be better and the latest and greatest thing.

Here’s a link that talks about the surgery and has videos.

– I thank you all for the support and kind words. I am still very ill from lyme and depression from other things going on so I try to be around for support when I can. I wish you all well on your illness journey or your loved ones and I hope you find some sunshine on those dark days. Try to stay positive and never give up better days are ahead.