New and closer to a diagnosis????
Posted: Sat May 28, 2016 9:00 am
Hey everyone. I have read through some of your posts, and have found comfort in knowing I'm not alone in wondering I'm new here, so I'll tell you a little about myself. I'm 45 years old and have been having symptoms at least since September 2015. I went to my PCP in December with a list of symptoms that I had no idea if they were related; told my PCP that I wondered if they were just age related stuff or possible onset of menopause. Those symptoms at that time were:
Night sweats
Mood swings
Sore/tender breasts
Thigh pain (back of legs) not with walking or exercise
Right Shin pain not with walking or exercise
Right arm/shoulder tenderness pain to mid forearm (like lifting weights)
Bottom of right foot pain; tingling in toes
Hand Ache
Right side lower facial pain radiating into ear...burning sharp ache that ranges from a 2-3 to an 8 in intensity
Lightheaded when changing position
Left side headaches that will come and go frequently for 3 days and then subside for days at a time
Irregular periods
On exam, she found that I was showing some weakness and evidence of tongue atrophy with fasciclations. She ordered labs and MRI's of the brain and cervical spine. MRI's showed damage to hypoglossal nerve and a spot on cervical MRI that was deemed insignificant by the radiologist as it was still brighter than surrounding areas. I was referred to a neurologist and had my first appointment in January.
Since that visit, I have undergone EMG's of right side (February), lumbar puncture (April), multiple labs, and evaluation with ENT (April) and rheumatologist (April-May). Together, they have ruled out ALL rheumatological autoimmune diseases, cancer, tumors, muscle disease, and muscular dystrophy. My neurologist at my last appointment in March, said he was pretty certain we could rule out ALS. That's when he referred me to an ENT and rheumatologist to rule out anything in their specialty. Here's what my tests have shown: low positive ANA 1:80; low vitamin D, but only insufficient level (not deficiency); positive UTI; and a significant increase in C-reactive protein from .16 in December to .77 in May (still considered normal level though). EMG was positive for hypoglossal nerve damage and ulnar nerve damage.
Now something to keep in mind, my neurologist did NOT order MS testing with the lumbar puncture or in labs; no testing for IgG oligoclonal bands at all. Furthermore, since my appointment with my neurologist in March, I have experienced additional symptoms in which I have reported to my rheumatologist and via a fax to my neurologist (have not heard from my neurologist). My rheumatologist said some of my symptoms could be due to Vitamin D insufficiency, but she said not all of them including the spasticity of my right foot. Since April 7th, these have been my erratic and sometimes daily symptoms:
Thigh pain (back of thighs) not with walking or exercise
Bottom of foot pain (ball of foot); mostly right foot, but some on left too
Bottom of foot tingling in ball of foot to toes; mostly in right foot, but some on left too
Inability to curl toes on right foot; becomes tight feeling
“Crawling feeling” in bottom of right foot, front right toes, and some in left bottom foot
Tightness in bilateral calves...feels like skin stretching when bending legs.
Right calf pain
Right thigh pain/tingling (side and/or front of thigh)
Right thigh “charlie horse” pain in upper right thigh muscle
Right hand pain (ache) and weakness..difficulty holding plates, half gallon milk, laundry detergent, opening jars, etc.
Right arm (inside just down from elbow) sharp stinging pain)
Right ankle twitch
Right lower facial pain/swelling feeling
Right arm itchiness
Left upper thigh tingling (like falling asleep)
Left back thigh twitching
Left upper arm and hand weakness (worked out feeling)
Left lower buttock twitching
Left body ache
Left calf ache
Left calf twitching
Left hand pain with cramping and feeling tired (worked out feeling)
Left biceps twitch
Left eye twitch
Off balance feeling when changing position/direction
Fatigue...worn out feeling; hits hard and feel like I need to lie down
Headaches
Upper arm itching; worse on left
Upper thigh rash (looks like hives)
Periodic “Brain Fog”...memory lapses, difficulty thinking of words, etc (4/19/16 good example)
Irregular periods (2 cycles in March; then 41 days until my cycle in May).
My next follow up appointment with my neurologist is June 22nd. I am hoping he will order another EMG and MRI's; I'm planning to ask depending on what he says. I know you all aren't a doctor, but I am curious as to your opinions of these strange array of symptoms and test results this far. One thing to note too, is my rheumatologist told me that I should ask my neurologist about sending me to Shands or Mayo Clinic for further treatment/follow up. That makes me suspect that she felt it's possible MS, although she didn't say it.
Thank you for any advice or insight you can offer!
Night sweats
Mood swings
Sore/tender breasts
Thigh pain (back of legs) not with walking or exercise
Right Shin pain not with walking or exercise
Right arm/shoulder tenderness pain to mid forearm (like lifting weights)
Bottom of right foot pain; tingling in toes
Hand Ache
Right side lower facial pain radiating into ear...burning sharp ache that ranges from a 2-3 to an 8 in intensity
Lightheaded when changing position
Left side headaches that will come and go frequently for 3 days and then subside for days at a time
Irregular periods
On exam, she found that I was showing some weakness and evidence of tongue atrophy with fasciclations. She ordered labs and MRI's of the brain and cervical spine. MRI's showed damage to hypoglossal nerve and a spot on cervical MRI that was deemed insignificant by the radiologist as it was still brighter than surrounding areas. I was referred to a neurologist and had my first appointment in January.
Since that visit, I have undergone EMG's of right side (February), lumbar puncture (April), multiple labs, and evaluation with ENT (April) and rheumatologist (April-May). Together, they have ruled out ALL rheumatological autoimmune diseases, cancer, tumors, muscle disease, and muscular dystrophy. My neurologist at my last appointment in March, said he was pretty certain we could rule out ALS. That's when he referred me to an ENT and rheumatologist to rule out anything in their specialty. Here's what my tests have shown: low positive ANA 1:80; low vitamin D, but only insufficient level (not deficiency); positive UTI; and a significant increase in C-reactive protein from .16 in December to .77 in May (still considered normal level though). EMG was positive for hypoglossal nerve damage and ulnar nerve damage.
Now something to keep in mind, my neurologist did NOT order MS testing with the lumbar puncture or in labs; no testing for IgG oligoclonal bands at all. Furthermore, since my appointment with my neurologist in March, I have experienced additional symptoms in which I have reported to my rheumatologist and via a fax to my neurologist (have not heard from my neurologist). My rheumatologist said some of my symptoms could be due to Vitamin D insufficiency, but she said not all of them including the spasticity of my right foot. Since April 7th, these have been my erratic and sometimes daily symptoms:
Thigh pain (back of thighs) not with walking or exercise
Bottom of foot pain (ball of foot); mostly right foot, but some on left too
Bottom of foot tingling in ball of foot to toes; mostly in right foot, but some on left too
Inability to curl toes on right foot; becomes tight feeling
“Crawling feeling” in bottom of right foot, front right toes, and some in left bottom foot
Tightness in bilateral calves...feels like skin stretching when bending legs.
Right calf pain
Right thigh pain/tingling (side and/or front of thigh)
Right thigh “charlie horse” pain in upper right thigh muscle
Right hand pain (ache) and weakness..difficulty holding plates, half gallon milk, laundry detergent, opening jars, etc.
Right arm (inside just down from elbow) sharp stinging pain)
Right ankle twitch
Right lower facial pain/swelling feeling
Right arm itchiness
Left upper thigh tingling (like falling asleep)
Left back thigh twitching
Left upper arm and hand weakness (worked out feeling)
Left lower buttock twitching
Left body ache
Left calf ache
Left calf twitching
Left hand pain with cramping and feeling tired (worked out feeling)
Left biceps twitch
Left eye twitch
Off balance feeling when changing position/direction
Fatigue...worn out feeling; hits hard and feel like I need to lie down
Headaches
Upper arm itching; worse on left
Upper thigh rash (looks like hives)
Periodic “Brain Fog”...memory lapses, difficulty thinking of words, etc (4/19/16 good example)
Irregular periods (2 cycles in March; then 41 days until my cycle in May).
My next follow up appointment with my neurologist is June 22nd. I am hoping he will order another EMG and MRI's; I'm planning to ask depending on what he says. I know you all aren't a doctor, but I am curious as to your opinions of these strange array of symptoms and test results this far. One thing to note too, is my rheumatologist told me that I should ask my neurologist about sending me to Shands or Mayo Clinic for further treatment/follow up. That makes me suspect that she felt it's possible MS, although she didn't say it.
Thank you for any advice or insight you can offer!