Symptoms?

[kim]

Dear Dr.

I am a 33 yr. old female and am currently under the care of a neurologist. However, I remain undiagnosed. My first major symptoms were a heaviness and pressure on the side of my face. Then, my ear started ringing very loudly. During this time, I had an episode of bilateral facial weakness and started slurring my words for about twenty-four hours. I had a second episode of this four months later but was still able to speak clearly. I feel severve fatigue--to the point of not being able to function. The right side of my face continues to feel numb and droops slightly.Occasionally, I experience dizziness as well as numbness and tinging in my legs and arms. I have muscle spasms in my legs at night. I have also had vision problems--severe pain, blurriness and darkening of my vision especially in my right eye. My vision returned but not back to 20/20. I also have sporadic head and hand tremors and jaw quivering. My ability to concentrate and short term memory also seems to have been affected. To this date, my blood work shows no abnormalities. My MRI shows one lesion. I am waiting results of a second lumbar puncture. The first one, approx. a year ago, showed no abnormalities. I have been tested for lyme several three times--all negative. What do you think this could be?

[Deborah A.]

You mentioned you were tested several times for Lyme Disease.  Unfortunately the standard Lymes test can be inaccurate, alot of false negatives.  There is a test which I believe is called a polymerase assay test which is done on the spinal fluid to detect Lymes. If you are facing another CFS test you may want to ask your Dr. about adding this just to be on the safe side. Good luck.

[Linda]

Hi Kim:  I too have some very of the very same symptoms.  The right side of my face started out feeling heavy and now it moves all the time without a break.  It's some kind of spasm but my Head MRI was neg.  I also have ringing in the right ear.  My head also went numb like Lisa's.  It never really came back all the way.  I have neck problems.  A bone spur at c5-c6 and a herniated disk but all my doctors say it's not the problem.  I also have muscle fasciculations and weakness in my hands, arms and legs.  It's very frustrating to feel so aweful and nobody can tell you why.  Hang in there, stay positive and try not to worry.  Best of Luck.  Linda

[Thanks Lin - Lisa]

Hi Kim,

I posted very similar things a while back. I, too, have heavy pressure feeling on the right side of my head. At the same time this started my bp went up, I have pvc's now, tachycardia too. I have muscle twitching, and my joints ache on and off. 2 weeks ago the right side of my head went numb, lasted about an hour and 45 mins., then as it was going away it felt "electrified" and I had a burning sensation. I am finally going in for an MRI and MRA. My neuro ran a EEG and TCD. EEG showed slow brain response. TCD was incomplete, they couldn't get pressure readings of the arteries and vessels in my brain, said they were too weak. Neuro thinks I may have blockages. My heart is fine, cardio doesn't know what is causing all the chaos.

One thing I am concerned about is that warning from the FDA on that drug, Phenylpropanolamine (PPA for short), that's been all over the news. I just found out a sinus pill, Entex LA, I had been on for 8.5 years, 2 x day, is basically straight PPA. I quit taking this in June of this year, August is when all this stuff hit me. Wonder if there is a connection.

Please let me know if you find out anymore on your illness. I to date haven't been dx'd yet, just eliminating things.

Good Luck, Lisa

[CCF Neuro[P] MD, RPS]

Dear Kim:

I am sorry to hear about your symptoms.  Bilateral facial weakness is not a common thing and usually we think of systemic illness such as lyme, sarcoid, viral illness etc.  But it seems that your symptoms are also coupled to whole body symptoms.  I am unsure what could cause such wide spread symptoms without any abnormalities.  We have seen some really unusal symptoms associated with mitochondrial diseases in the past but clearly not of your description.  I am sorry, but without any laboratory abnormalities, neuroimaging abnormalities it is difficult to give your symptoms an etiology.  Kim, there is alot that we do not understand about the human body and why symptoms can occur without knowing  what caused them.  I wish I had some suggestion for you to pursue, but given only symptoms without any abnormality it is difficult.  

Sincerely,

CCF Neuro MD