No diagnosis Stenosis, MS, others??

[rtyszka]

I am at my wits end.  I have been living through some of the hardest days of my life and am being told there is nothing that can be done.  My family doctor is spearheading a request to Lahey Clinic in Boston.  

Doctors seen: Neurosurgeon, Neurologist , Rheumatologist.  

Daily Symptoms:  (these have been occurring for 6 months and have been gradually getting worse)


Weakness (uneasy, tingling)  in both legs.  Shocks (depends on body position, action, etc) in hands and spine, this occurs more in hands/arms than spine and more prevalent on Left Side.   I am not sure if its related to this or the drugs, but it is becoming difficult to do detailed tasks.
  
Pain in lower back (dull pain all the time) when walking or standing more than 100ft/10 mins becomes debilitating and I cannot stand upright at all.  
Pain in upper back and neck (dull to severe every day).
  
Hyperreflexes with Clonus both legs and Tremors/convulsions or shakes through lower body and sometimes whole body.  They become worse with activity also Gabapentin appears to help slightly.  I am so sensitive when I take a shower, the water hitting my legs makes me feel weak.
  
Night sweats almost every night.

Other Symptoms:  I had a few times where my upper lip went numb(like I came from dentist).  I had the tremors go non-stop for 2-3 hours a couple times, the pain and energy loss afterwards was incredible.
  
Tests Done:

MRI:  (focus pain neck and leg left side)
Loss of cervical lordsis which may be due to spasm or positional
Intevertebral disc height @ C6-7 is slightly decreased
Neural forminal narrowing on right C6-7 seen in oblique views
The other neural formina appear patent
The pre and paravertebral soft tissues are unremarkable and the lateral masses of C1 and C2 are normal.  No cervical ribs are seen.
Impression:  Evidence of mild narrowing on the Intevertebral disc at level of C6-7 and right sided neural forminal narrowing, probably secondary to degenerative change.  Loss of normal lordosis in the cervical region which may be due to muscle spasm, no evidence of fracture is seen.

Another MRI (focus on stenosis)
Moderately severe spondylosis at T9-10.  There is some minimal wedging of the T9-10 vertibral bodies.  There is disc osteophyte complex.  The contour of the thoracic spinal cord is slightly flattened at this level and there is suggestion of some increased signal.  These findings appear chronic in nature.  There is no evidence of acute compression of the thoracic spinal cord at this level.  There is also a small disc osteophyte complet at T10-11.  There is no contour abnormality signal in the thoracic spinal cord.  No other positive findings are identified.

CAT Scan with/wo Contrast (Brain)
Normal CT of Brain the noted prominent external occipital protuberance is normal anatomical variation
EMG: Both hands/arms slight carpel tunnel, legs, feet no issues.

BONE SCAN:Degenerative arthritic disease in knees, sternoclaviclar joints and thoracolumbar spine.

Myelogram with contrast: Normal thoracolumbar myelogram (did see a rounded mobile filling defect is consistent with an air bubble)

Spinal tap (scheduled) to test fluid for MS markers

[LADOO1212]

I too am curious about MS LINK to cervical spinal stenosis but never get straight answers from anyone anywhere. I read the book Total Recovery. Y Gary Kaplan. Very interesting and best info so far if this is indeed fibro. But I think so far they are way off base, this all started with MRI SHOWING degenerative issue and the foraminal issue.... Oh and loss of cervical curve. No Lyme, none of that. High EBV they claim has nothing to do with it????ok. Wow just wow.

[LADOO1212]

Yes they suggested a mylogram. I refused and rheumatologist and chiropractor and GP ALL AGREED , that that is a bit invasive of a test for neurosurgeon to suggest off the bat.!!!! I take guess,,,, guess?? Tramadol and muscle relaxers if needed!!! Really???  This is the best they can do? No wonder the world is hooked on pain meds. I refuse to just do that too. Just masking pain rather than getting to cause and getting on with some real options. I'm so disappointed and angry that I have to keep making all these appointments to no avail.

[LADOO1212]

I am in same situation exactly . Foraminal stenosis (narrowing of left foramen) and pinched nerve C3-C4. Doctors all saying they have seen worse. What good does that do ANYONE ???? if your pain, also stinging throughout body like bee stings, occasional muscle weakness everywhere and fatigue, ear ringing, flu like symptoms ,over all constant feeling of blood rushing throughout legs and muscle spasms continues? Are we just supposed to live with it. Doctors are really on my last nerve and I don't seem to have any that aren't already overloaded!!! Jeez get,these doctors educated on this stuff. It is so frustrating!!!!!!!!!!!!! Thanks. Venting here!

[Becky007]

My husband just had a MRI to check for ms. The MRI was done without contrast.  The results came back with forminal stenosis in C3-4.  Does anyone know if there is a link between MS and Forminal Stenosis?

[honeymoose]

For ten years I have also had severe lower leg and mostly feet pain.  When weather systems move thru our area, systoms are worse, throbbing,  burning, tingling, tightness, and numbness all combined.  Have taken nurotin/gabapentin successfully but am alergic to both, which by the way caused numbness to lips.  Had one stint in March of 2009 and for one month after surgery was completely pain free.  The the pain returned.  I walk one mile daily if at all possible and do not take any medications other than occasional pain medication.  Doctors seemed lost as to what could be causing this and I am led to believe uninterested.  If they only knew how I want to scream, the pain is horrible.

[cat33]

We're not quite ready for an autopsy yet Try taking nurontin/gabapentin 8 times a day.

[patsy10]

I don't see the most important test of all listed, MRI of the brain with and without contrast.  This should definitely be done before a spinal tap.  A CT scan is not good enough.  MS can be ruled in or out by MRI.  A spinal tap is a most unpleasant procedure.  I've had 2 of them.

[Spring-02]

I can relate to your symptoms and also have had five MRI's which reveal no abnormalities except minor spinal stenoisis, which is normal for somebody of my age, 60.  I could almost predict when it was six o'clock as my lips would start to tingle and my leg would get much stiffer and tighter.  I have had EMG's an EED, Evoked Potential, Lyme test and they all have been normal. At first my neuro suspected an Upper Motor Neuron, but at least it is not ALS, as my symptoms first started in 2002.  My reflexes are also hyperflexic and my Central Nervous System is very hypersensitive. Some days my walking is worse then others but I do have unexplained left-sided weakness. I cannot detect any positional direction with my left big toe, unless I am looking at it.  I suffer from chronic neuropathic pain with associated numbness, tingling and weakness.  I take Gabenpentin or Neurontin three times daily.  All the rubs etc. don't do anything to alleviate the pain.  When it is really bad and my leg and foot feel dead, but also the pain is burning, I use my Magic Bag for relief.  Cold, damp weather aggravates the pain and it is always WORSE at night.  I thought I was quite healthy until I turned 55.  Now I have high blood pressure and cholesterol and need surgery for a giant parosphegical hernia.  I had severe dizziness last summer and my blood count was so low they wondered why I hadn't passed out. I must have had an internal bleed from the hernia. I was taking low dose daily aspirin and night time aspirin for the burning pain, but it must have aggravated the hernia and my stools were black, from the blood loss.  However, I still feel that I can manage if my symptoms do not worsen.  My speech is affected and I either stutter or can't get the words out at all and do a lot of hand waving.  Hubby has become a very good translator.  Hang in there, try to thing positively about it all and it could be worse, a cousin of my husband's, who is in her mid fifties has ALS.  I have also heard it sometimes takes ten years to get an MS diagnosis, if the lesions don't show up on the MRI.   Not knowing what is the cause of your weird symptoms is harder on the head at times.  I told my husband i

[Spring-02]

I hope they do an autopsy after my death to see if they can find an explanation for my symptoms, so at least my family will know if it may be genetic or not.  MS runs in my mother's side of the family but the closest is Grand Aunts and cousins.  Pernicious Anemia also is on her side, grandfather and multiple aunts, but they tell me my B12 levels are normal and I was also tested for Lyme, which was OK as well.

God Bless