Questions posted in the Neurology and Neurosurgery Forum have been answered by doctors from The Cleveland Clinic Foundation.

Subject: Re: baffling progression and ANA titer
Forum: The Neurology and Neurosurgery Forum
Topic Area: Neuromuscular
Posted by CCF Neuro[P] MD, RPS on March 29, 1999 at 13:35:18:
In Reply to: baffling progression and ANA titer posted by KD on March 16, 1999 at 13:34:10:



Dear Doctors,

I am a white male. I will turn 28 at the end of this month.

Five weeks ago I noticed fasciculations in my right forearm. They were repetitive and actually caused my little finger to move a little.

In a matter of days, the fascics consumed my body; including all the hot spots I've read about in prior postings here: lower left eyelid, calves, upper arms, corner of mouth, back, abdomen, etc. Profuse by my account. There was no pain or paresthesia in the first few days.

However, I soon developed a stiffness and achy feeling in the right forearm which was initially affected. This prompted me to consult with a Neurosurgeon I know, and he did a cursory exam, during which I sobbed about my growing fear of an advancing NMD e.g., ALS. He did reflexes, no Babinski, etc., and referred me to Neurologist.

Saw Neuro next day, fears unassuaged, and described problem to him. He put me through the normal neuro routine, which went fine. He saw a few fascics, but I was unable to "perform" for him the literal hundreds per day I was having at that point. Also, I complained to him that routine movements left me feeling that I was "about to pull" a muscle. Walking, picking up my phone, even sitting made me feel like I was going to tear a muscle. I feel like I'm gonna blow my back out sitting in my office now. Moreover a general achiness was taking over joints; especially knees, ankles, and wrists. He assayed my anxiety and prescribed Xanax, and dx'd BFS based on clinical observations. Have had minimal cramping, even when running, and ZERO weakness. He did blood: Electrolytes, Calc., Sod. Mag., T4, TSH. All normal.

Within days of visit with Neuro, pain became the predominant problem. Fascics diminished (maybe due to Xanax). The stiffness/achiness in right forearm came and went sporadically, but then I was starting to have deep "gnawing" pain down my left leg reminiscent of the pain you feel when a severe sprain or broken bone is beginning to heal. Fascics, actually more like spasms and myokymia occurred in upper leg nonstop until the leg pain diminished over a few days. Then I was left again with the "mobile" aches and pains that continue to afflict me. Plus, sporadic, widespread fascics and rhythmic myokymia on trunk.

Contacted Yale Neurology three weeks into this. I live in CT. Had an EMG done (left arm, left leg, right arm); came up totally clean. Yale neuro said to come back in 3 weeks for exam. Guarded euphoria temporarily supplants terror.

However, transient muscle/joint pain everywhere continues. Most alarmingly, stiffness and pain setting into neck and base of skull for days at a time. I have it right now, in fact. Even worse, and launching me into a greater panic, for the last week or so I've had tingling/pins and needles sensations in toes, bottom of feet, and fingertips. It comes and goes from limb to limb, assymetrical. These symptoms prompt me to call first Neuro. He ordered more blood and tranquilizers, bless him. CPK, Lyme titer, Sed rate, ANA. ANA comes back positive 1:160 (I don't know pattern). Neuro says don't panic, too late.

I've read myself here that approx. 80% people dx'd w/MS have positive ANA, and mine's four dilutions above normal. I fully understand that ANA alone is diagnostic of nothing, and that test should be repeated. But, I have had no skin manifestations that would suggest Lupus. And, I thought it was rather improbable that MS would start as I've described. I guess ALS is still in the picture, while Yale guy totally doubts it. Incurable mitochondrial disorder? Man, I don't see too many good possibilities here.

Again, no weakness as of yet. No atrophy. Just twitches, pain, and sensory stuff.

One more monkey wrench; I've suffered with an intractable sinus inflammation problem for almost 2 years, even had FESS to correct it without effect. Since this all started, no sinus trouble. And, I've never had more than a week's reprieve from severe, painful inflammation from left side sinus through nose.

I was planning to go to law school next year, and just got married. I'm really going berserk.
Thanks in advance. This is a pretty long read, but I wanted to maximize my chance. I've been trying to post for a while.

Any ideas or candid words of encouragement?

Regards,

KD


Dear KD:

See my posting on your question on a more recent posting of yours. Sorry I missed that the sedimentation rate was normal (more evidence that you don't have lupus).

Sincerely,

CCF Neuro[P] MD

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