Experiencing new symptoms

[michelle vilas]

I've posted here before regarding BFS-diagnosed in 6/02.  I am currently experiencing new symptoms along with the widespread twitching. I am hoping that maybe you can point me in the right direction as to what in the world could be causing this or what tests I should ask for. I am still twitching 24/7.  I have extended muscle soreness after minimal activity & crawling sensations on my legs & arms. A month ago, I woke up with an extremley sore, stiff & swollen finger on my left hand & it hasn't gotten any better.  I am now experiencing severe headaches in the moring on the left side of my head.  It feels like it may be coming from tense muscles in my neck/shoulders but I can't seem to get rid of it.  I have a history of migraines with aura & tension headaches but I'm not sure if this is really a tension headache. Should I be concerned about a brain tumor?  Another symptom that really scares me is a feeling like my eyes are stuck crossed.  It's not really double vision.  It usually only lasts about 45 seconds, happens apprx. once a month and it has been happening for a few years. I also have periodic shortness of breath, occasional numbness in lip/teeth, feeling of lump in throat (not typical anxiety feeling), stiffness in neck/shoulders that can't be worked out.  Back in Feb., before all the symptoms started, I had a normal MRI for migraines.  EMG, bloodwork, ANA, Lyme- all negative.  Also, I mentioned before, I had RMSF 2 years ago.  I can't get into another neuro until Nov. I am seeing Dr. Chemali at CC.  Any recommendations or insight is greatly appreciated.

Michelle

[Annika]

Dear Michelle,

I have some of the same symptoms you describe, in particular those you mention here:

"I also have periodic shortness of breath, occasional numbness in lip/teeth, feeling of lump in throat (not typical anxiety feeling), stiffness in neck/shoulders that can't be worked out."  

I have many more symptoms too, that all refer to the brainstem, where my likely problem is felt to be.  These include a feeling of pressure behind the ears, ringing in the ears, intermittent blurred vision, pressure behind the eyes, sensation of choking/gagging/constriction in the pharynx, intense pressure at the base of the skull, burning sensations in the tongue, intermittent voice changes.  In addition to the muscle stiffenss in my neck, I also have muscle wasting in the back of my neck and upper back.  I have soreness/aches in my shoulders/arms/hands, in particular the fourth and fifth fingers (pinky and ringfinger), which has turned into a stiff, tight sort of weakness.

My problem is one that I'm sure you'd be unlikely to have - I have a tethered spinal cord (stuck due to scarring from a spinal tumor removal).  The stuck spinal cord is pulling all the way up to the area where the brainstem/spinal cord leaves the skull, and apparently is affecting the nerves of the brainstem.  This is very similar to what happens with another known spinal anomaly, called the Arnold-Chiari Malformation.  

I just wrote up some basic information on Chiari and some other spinal abnormalities in another post above:

"MS-like symptoms, no positive diagnosis - what next?"

If it makes sense in your case, you can always read through what I wrote there to see if any of it seems to fit your situation.  I just post it as information only - don't mean to be trying you to saddle you with a diagnosis that doesn't fit you.  

I just described the problems I had in the upper body, but I also have substantial muscle weakness/atrophy/stiffness/tendon tightness in my legs, as a result of damage to the motor neurons within my spinal cord.  This type of damage, to my understanding, cannot be seen on EMG.  All my lower body problems are a result of my tethered cord, which again is a different situation than the one you describe.  

Good luck,
Annika

[Viol3t]

Hi Michelle.. maybe you should check out peripheral neuropathy too.. sounds like it, but you need not undergo for the meantime MRI or the like. Just ask someone to do neuro PE on you, like for instance your reflexes, checking your cranial nerves and all. Lab.work ups can really help but i think physical exam will really help you a lot.

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

I'm not sure that everything can be explained with one unifying diagnosis. Some of your symptoms do appear to be neurologic in nature while others could be musculoskeletal. With a recent normal MRI brain, it would be unlikely that the headaches are due to a brain tumor unless it was a rapidly growing tumor in which case you would likely have severe neurological deficits such as weakness on one side of the body. Certainly could be migraines or tension type headaches. Another possibility for morning headaches could be undiagmnosed sleep apnea. If you are a snorer with sudden episodes of catching your breath at night, this could be the problem. As for the generalized stiffness and muscle aches, it is somewhat reassuring that the EMG (if it's of good quality and done by a formally trained physician) is normal, which helps to rule out muscle and nerve disease. Finally, have your PCP take a look at your finger to make sure there's no infection or severe joint disease. Dr. Chemali is very good and kind. Best of luck.

[michelle vilas]

I'm not sure if the Dr. will see this or not, but I forgot to mention a couple things.  I wanted to mention that I have a tingling sensation on the left side when I do a toe curl, it radiates thru my toes and my instep.  Also, I noticed a couple weeks ago, while scratching my leg, the same thing happened at a certain place in my leg.  When I would press against this spot a tingling/shocking sensation would radiate through my leg.  This only happens on my left side.  I also of parathesia of all sorts t/o my legs/arms.

Michelle