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The Great Search--any ideas on what is going on with me?

Hey everyone. Long, lonnnng time no post--which is a good thing. :) It meant after my two surgeries, I was able to go on with my life--have another baby, go back to work, live. But ever since last August, my life has been pulled out from under me, and we still haven't figured out what's going on. I remembered how very helpful and supportive this community was, so I thought I'd re-register and come back and share my timeline of recent events with fellow spineys to see if you have any ideas on what may be going on with me. Of course, I recognize the caveat no one here is a doctor and I need to go over this with the specialists, but I'm simply seeking a brainstorm with an experienced group of folk.

As I have attempted to navigate the maddening gauntlet of appointments, tests, referrals, and results, it seems all that we are gathering are puzzle pieces with no real idea what they are supposed to be when put together—or heck, whether they all belong to the same puzzle. In the last few months, new symptoms have arisen, and still we don’t know what they’re telling us. Thank you in advance to any and all of you willing to wade through this with me.

Tests I've had done: I have had a brain and cervical MRI with and without contrast with no significant findings outside mild cervical straightening and a small Chiari malformation herniation that I have been repeatedly told (two neurologists and two neurosurgeons) is not behind my symptoms. I’m still not entirely convinced, but, shrug. I have had multiple bloodtests checking for everything from lupus to rheumatoid arthritis to myelin sheath cancers; thus far, nothing notable except my B12 was a bit oddly high (not exceedingly so; over 1000 when normal is up to 915 or so). I do have Hashimoto’s thyroiditis, so my thyroid antibody numbers are off the charts. My sedimentation rate has always tested normal. I’m vitamin D deficient (common with Hashimoto’s) but taking 3000mg a day keeps it in normal range. Incidentally, my thyroid numbers are all in happy places now that I’m on medication. Also note I kept track of diet and symptoms for two months and found absolutely no patterns or correlations.

Here are the symptoms (puzzle pieces):
May 2013: After a bad headache the night before, I inexplicably feel like I'm going to faint at work. I manage to sit and push through it, but fight the feeling the rest of the day. Have periods of heart palpitations. Went to ER where I was told I wasn't having a heart attack or stroke.

Summer 2013: See cardiologist to rule out heart issues. Have new echocardiogram, wear a heart monitor for a week, and EKG. Everything is normal except periods of rapid heart beat disproportionate to exertion/activity. Begin noticing severe fatigue and body throbbing. Start getting back of head headaches; sometimes they wake me up in the middle of the night. Begin noticing shaking hands. Notice cold intolerance.

August 2013: Diagnosed with Hashimoto’s disease and begin Synthroid.

September 2013: Singular solid thyroid nodule biopsied; benign and consistent with Hashimoto’s thyroiditis.

October 2013: No longer able to work due to severe fatigue, periods of insomnia, severe body aches, headaches (back of head, made worse by lying down), sensory overload/chaos intolerance, occasional bouts of hands shaking/tremors, occasional palpitations, exercise intolerance, occasional feeling of pressure on the back of my head, tingling tongue, and hot, throbbing hands and feet.

November 2013: All of the above plus the sensation of ants crawling up the side of my head; always one side or the other, but never both. Headaches quiet. Body aches rage. Start noticing feeling “off,” as if medicated or in a fog. Sometimes struggle to find words, and it alarms and frustrates me. Diagnosed with fibromyalgia and begin Cymbalta 30mg (full dose wasn’t until December).

December 2013: All of the above, but the pins and needles sensation is much stronger—feels like my hair goes on end—and lasts longer. Right leg has periods of lower leg numbness and feeling of heaviness; walking can be awkward, but not labored. Pins and needles feeling on the outside of the right leg. Fatigue and exhaustion and severe this month, though perhaps due to (or more noticeable because of) the holidays. Eyes sometimes have trouble focusing; vision isn’t blurry, but they keep zoning out. Begin Cymbalta 60mg dosing.

January 2014: All of the above, except hand tremors are daily now. Atrocious body aches accompany sinus infection. Neurological exam does not show anything abnormal except mild hand tremors when I go from sitting to rising and stick my palms out in front of me. Brain MRI reveals “mild Chiari malformation with minimal tonsilar herniation.” Begin physical therapy. Noticeable muscles locking up occasionally on use; applies to all muscles and parts of the body, i.e. jaw grows stiff and tire after just 3-4 chewing motions, arm grows heavy and tired after 3-4 curry comb strokes while brushing horse, lower leg locks up and gets heavy when walking across parking lot, etc. Pushing through this sort of odd muscular fatigue results in significant muscle soreness the next day.

February 2014: All of the above, plus new neurological exam shows left side is weaker and tremor is consistently worse in left hand. Touching my left finger to my nose then doctor’s fingertip also is more of a struggle and results in more shaking in that hand. Nerve conduction test (focusing on upper body) is normal except right ulnar nerve shows some diminished signaling. EEG normal. New manifestation: every time I sneeze, the ants crawling up the side of my head feeling results. Body aches ease. Begin realizing every time I laugh, talk, or even sing loudly, it triggers a severe headache. Experience worst hand tremors ever; felt throughout my whole body. Headaches return. New symptoms: First ever known incident of sleep apnea—husband woke me up because I’d stopped breathing. Back of head pressure nearly constant. Feeling of pins and needles extends down right arm and top of right hand occasionally. Cervical spine MRI measures Chiari malformation at 4mm and notes some cervical straightening and a few mild (1mm) bulges. Note weight gain of 10lbs assumedly due to the Cymbalta as diet and activity level was not changed.

March 2014: All of the above, plus neurological exam reveals inability to feel temperature (hot or cold) on lower right leg, inability to balance with eyes closed and standing with feet together, and right side of face had less forehead wrinkle on the right side and right eye did not open as much as left as I grew tired. Headaches are near daily and vary in severity and length; sometimes 2 hours, sometimes 2 days. New symptom: every time I squat or bend over for more than a few seconds, I experience a very strong head rush when changing to standing upright. Can be severe enough I have to grab something to hold myself up. Experience a weekend of worst-yet fatigue; overall energy was awful and struggled to stay awake for a two days. Body aches return toward the end of the month.
Microdiscectomy/Foraminotomy/Laminotomy at L5/S1 in 2006 and 2007
4mm Chiari Malformation
Multiple neurological symptoms--currently running the doctor appointment and test gauntlet trying to find cause


  • LizLiz Posts: 7,832

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • There is a blood test they can run to determine if you are gluten intolerant. I bring it up because my former supervisor had a lot of the same symptoms you do, was given Cymbalta, and it was later determined by blood test that she had celiac disease. Like you, she was diagnosed hypothyroid along the way and was given synthroid. You don't mention if you have belly bloating - what she called her wheat belly - but you did mention weight gain. Obviously I am not a doctor, but this is an experience I witnessed, and I'm posting in case it may help you.

    I know it's trendy lately to go gluten free, but if you have actual celiac disease it can make you really really sick if you continue to eat gluten.

    I hope you find the answer to your problems. I understand how frustrating it is to see doctor after doctor and do test after test to find nothing, when you KNOW there is something very wrong.
    (see profile for medical details)

    I *heart* my TENS unit.
  • monicahollmmonicaholl Posts: 9
    edited 04/16/2014 - 6:55 PM
    have you been assessed for parkinson? it won't show on mri. check the symptoms, Main symptoms of Parkinson's Tremor (shaking) Slowness of movement Rigidity (stiffness) -


  • anelesen15 I know what's wrong with me finally
    We can't always control the cards we are dealt in life, but we can control how we play the hand
  • I was going to say I thought about Parkinson's too, because of all the tremors.

    The member name & post listed above is one you might want to check out. Some of your symptoms are similar to yours, & he struggled for years before he got a diagnosis just a few days ago. You can read all about it in that topic he posted, & in sure if you PM him he will be happy to answer any questions.

    Good luck
    We can't always control the cards we are dealt in life, but we can control how we play the hand
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