Tight Jaw, Warm sensations

[Mike P]

Approximately 60 days ago, I began experiencing a "soreness" on left side of head and general malaise.  Thinking it might be sinuses, I went to PCP who thought it wasn't likely sinuses given its location.  After a couple weeks, I also began having "heaviness" in left arm.  Out of concern that this might be stroke (or something else serious), this combiniation of symptoms led me to ER.  MRI and CT were normal.  Left arm weakness went away after a week or so but general mailaise continued.  I followed up with a neurologist but he said since MRI and CT were "normal" as well as exam, we could ""rule out the bad stuff".  After a few weeks, I began to experience a pattern or "tight jaw" and "warm sensations", primarily in legs that would seem to occur day to day.  My PCP thought it may be anxiety and prescribed an antianxiety med.  I continue to take the antianxiety med (antivan) but this pattern of weird, "warm sensations" that last 5-10 seconds and the ongoing "tight jaw" continue.  I saw a second neurologist and again, he said my physical exam was normal but sent me to do extensive blood work. (At the onset I did tell me PCP that I was concerned about lyme so he did a lyme test but it came back negative). I don't have the blood test back but assuming their "normal" I'm looking for advice on "next steps".  My questions include:  since my MRI and CT were normal, does this rule out MS?  Is there other tests or specialists you might suggest that I've not tried?  From what I read, it appears that Lyme is a possible culprit but both physicians seem to have ruled it out? Advice???

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.    
   The symptoms that you describe are non-specific, but I would recommend more testing.  One possibility is hemi-plegic migraine headaches (headaches associated with weakness on one side of the body).  You described "soreness" on the side of your head, but not the typicall pounding headache, the problems with lights, sound, movement and/or nausea/vomiting.  To test for hemiplegic migraine (some genetic tests are also availible) I would recommend that you start a migraine preventative medication and see if your symptoms improve, such as elavil, topamax, nadolol, etc.
   A negative "blood work test" does not eliminate lyme as a possibility.  The blood test can be negative a times, and should be followed up with a western blot test.  If the clinician suspects lyme (due to history of tick bite, living in a lyme endemic area, or pattern of symptoms) a trial of antibiotics is recommended.  As a diagnostic test, a brain SPECT test is also helpful in suspected neuro-lyme cases, because lyme can cause a vasculopathy that causes dysfunction, but will not show up on MRI.
  A negative brain MRI makes multiple sclerosis (MS) less likely, but it not an adequate evaluation.  I would suggest that you also have an MRI of the cervial spine with contrast, a lumbar puncture to examine for inflammation (IgG index, oligoclonal bands) and visual evoked potentials to examine for evidence of past optic neuritis.
  I would also recommend that you have an EEG, electroencephalogram, (brain-wave test) to examine for any seizure activity (partial seizure disorders can sometimes present with the symptoms you describe).
I hope this has been helpful.

[Mike P]

Thanks Doctor.  Very helpful.  I'd like to take care of these tests locally if I could be I anticipate that I'll get a response (like before)...wait until Spring and see if things change.  Very frustrating.  I can understand the reluctance of a lumbar puncture (invasive) but there should be no reluctance on most other tests.  Should I receive this response, I'd like to make an appointment with Cleveland Clinic...please advise what department I should call.

Thank you.,
Mike

[Mike P]

A few updates...My bloodwork came back normal.  One symptom I didn't mention is that I also had a "sore" left ear early in these symptoms (as if someone was pinching the ear).  The strange sensations in legs have become less numerous but now I alternate between a day or two of "tight jaw", a few days feeling decent, and a day or two with pain in my left temple.  Looking for value of having an MRI of spine with all these symptoms.  My PCP suggested anti-dep but I've been on anti-anxiety and the symptoms still are there.  What would an anti-dep do that an anti-anxie didn't do?  Also, he said the lab he uses for lyme is 94% accurate.  And, he thought a lumbar puncture might be too "invasive" for current symptoms.  Which leads me to question....what can/should I do to diagnose???  Is there the possibilitiy of a long-term "virus" effecting neuro that will just go away?  Would a spine MRI detect mostly things that a lumbar puncture would?  what is the risk of a lumbar puncture?  Any advice would be much appreciated.

[strive4mores]

hi there,
since both your lyme tests were negative i wouldn't pursue that avenue.  i would ask for more testing from your neuro, although rare, ms can present lower in the spine, an evoked potential, emg and lumbar puncture could rule out more neuro issues.

good luck
sarah

[louiec]

I have the same trouble, i get the sensation in my face also a tingle in my lip. warn sensation throughout my body. If seen
nureo had all the test blood work blah blah blah, always normal
thank god. if been told its anxiety and that im symatic which
i think means i give my self the symptoms by thinking im always
sick. just to let you know your not alone try some antides maybe
that will help good luck.