--- Stumped and discouraged - Need your collective help in figuring out what is going on ---

Hi all,

This will be a fairly long post as this is not an acute issue but something that has been going on for about 2 years and is progressively getting worse. Its driving me crazy, literally. When you have time, I would greatly appreciate it if you could review the presented information and present me with some suggestions and answers.

My neurologists (2 of them) and primary care so far are stuck and do not know the answer. My primary is re sending me to physical therapy yet another time. I am highly discouraged and I wanted to open this up to the community.  If you know a doc or there is a better forum or a location you think I should go to for answers from doctors or someone else who could help, I would appreciate hearing it.

Here are my symptoms. I am copy and pasting from a Word document so I do not know if the formatting will come out ok:

1.        Head/neck dystonia type movements (not diagnosed) – mild

a.        Uncontrollable head/neck movement - pulls to one side and periodically has as a mild to moderate “jerk” to one side

  i.      not a tremble or shake that goes back and forth (like a shaky hand when held out) but more of a pull

                                                              ii.      Happens when I am laying in bed trying to sleep at night – literally driving me crazy

     iii.      happens infrequently when standing/sitting

    iv.      Happens more frequently when laying down on my sides then when just sitting or standing

1.        The head jerks/pull happen more frequently when I lay on my left side then right

a.        Head jerks seem to be less when I lay on my right side

b.        Head jerks seem to be less when laying on back

                                                              v.       Happens at rest or with movement

1.         exacerbated by turning neck completely to the side – especially right side

                                                             vi.      Occurs more frequently during above average emotional state (angry, anxious, sad, center of attention etc.)

                                                           vii.      Happens more frequently when trying to do a “fine motor movement” or to hold still

1.        Head usually wants to pull/jerk to the left in these cases

a.        For example:

-           drinking from a glass/cup

-           hold head still during a dental exam or MRI

-           Brushing teeth

b.        this has been occurring for about 2 years and has been slowly but progressively getting worse

                                                               i.      My initial concern and reason for first initial visit to Neurologist years ago – and continued follow ups

                                                              ii.      It is progressing to the point where getting to sleep is incredibly hard and have considered suicide

1.        – other symptoms listed below have started happening since

Other Symptoms

2.        Various random muscle pains, tingling, irregular movements  – no loss of muscle strength

a.        Nerves and muscles seem more irritated then in all my life

b.        Mild uncontrolled muscle fasciculation s in both of my calves that is can now be visibly seen, not just felt by me

                                                               i.      Started off non painful

1.        progressed to the point of discomfort - has to be addressed with pain or muscle relaxer meds

                                                              ii.      In  addition to the uncontrolled movement – it feels mildly like pins and needles at times – uncomfortable

                                                            iii.      Walking in general, walking down steps and some other movement sometimes feels of

c.        Extremities (legs/arms) seem to “fall asleep” and tingle” faster than usual just by laying or sitting

d.        Muscles in general seem abnormally and unusually achy and tired after just moderate (not severe) exercise

3.        Multiple symptoms specifically on the right side of my body

a.        Pain on both sides of upper butt (mostly right) and pain down both right leg – Piriformis Syndrome?

b.        Muscles in right side of neck feel stiff

                                                               i.      Muscles in right side of neck ache and feel tight when I turn my head

c.        Thoracic spinal muscles on the right side of spine ache and feel stiff

d.        Mild ache on upper/outer right foot  – has now moved over to the left foot at times as well

e.        Right hand sometimes seems to feel as if it has fallen asleep when I wake up  even if I am not sleeping on that side

f.         Right hand feels “off” and thumb tip is sometimes mildly numb - thumb movement seems stiff and jerky when moving

g.        Right eyelid sometimes twitches

4.        Unusual high levels of restlessness, agitation and mood swings – unusual depression and significant anxiety/panic attacks

5.        Neck “grinds” and “pops” when I turn it

6.        Sleep issues that occur more frequently now and have really never been an issue for me before

a.        Sometimes takes unusually long time falling asleep – head keeps pulling and/or anxiety

b.        Wake up  multiple times throughout the night to use restroom

c.        Sometimes hard time going back to sleep

d.        These things are reduced when I take Gabapentin and/or Klonopin (.5 mg)

7.        All of these things have been occurring for over a year now and seem to be slowly but progressively getting worse

a.        All of these symptoms seem to be worse at night when laying in bed and trying to sleep

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Tests done and possible things to investigate:

MRI results:

See MRI report, EMG tests – all blood tests came back normal

1.        Cervical spine – no disc is pushing on spinal cord in images

a.        Left C6 – C7 left perineural cyst

b.        Mild cerebellar ectopia on the left

2.        Thoracic Spine – no disc is pushing on spinal cord in images

a.        Tiny disc protrusions at:

                                                               i.      T4 – T5

                                                              ii.      T5 – T6

                                                            iii.      T6 – T7

                                                             iv.      T8 – T9

3.        Lumbar spine - no disc is pushing on spinal cord in images

a.        Laminectomy and fusion at L5 – S1 – performed in 2011

b.        Mild buldging of the L4 – L5 disc

EMG and NCV results

See EMG and NCV results

4.        1st nerve test - Impression/results – by 1st Neurologist

a.        Mild axonal – demyelinating sensory polyneuropathy

b.        Denervation potentials right S1 innervated muscles consistent with ongoing S1 nerve root irritability

c.        Reinnervation potentials bilateral S1 and L5 innervated muscles consistent with chronic polyradiculopathy

5.        2nd nerve test – Impression/results – by second neurologist

a.        Said  “no ALS - no nerve disease” although haven’t seen results – no demylination

b.        Doesn’t know what’s causing symptoms – said I should return to Primary Care doctor

Things to ask doctor – further areas to investigate to get to source of pain

Let’s get to the bottom of what is going on

1.        Physical therapist also said he thought I had periformis syndrome

a.        This was confirmed by me doing periformis exercises and stretches and my sciatic symptoms and pain becoming significantly worse later that night and the next day

b.        Could we get a neurography (MRI that specifically sees nerves) ordered – Texas neurography.com?

2.        Perinueral cyst in neck cause of pain and muscle tightness?

3.        Narrowing of the foramen space in cervical or lumbar spine pressing on a nerve?

4.        Facet joint issue?

5.        Physical therapist recently said one hip and one shoulder is noticeably higher than the other

a.        Is there a way to test for one leg being longer then another?

b.        One hip being higher then another?

6.        A way to test for a degree of scoliosis?

7.        Any of the disc or buldging discs causing pain even though not significantly pressing on spinal cord in images?

8.        Sacroiliac joint dysfunction?

9.        Anything else?

10.     Gabapentin, Ibuprofen and muscle relaxers help with muscle discomfort, sciatic pain – sometimes pain powers through

11.     Benzodiazepines such as Klonopin help with anxiety and the irregular muscle movements - leads me to believe  there is issue with the brain

a.        Is either the brain sending sporadic signals to the muscles and nervous system because its hyper excitatory or are the muscles not communicating effectively with the brain leading to fasciculations, muscle tightness, discomfort?

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Please assist or get in touch with someone who can. Feel free to send me a private message as well.

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