Is wait and see approach really the right choice? What to do now?

[steve_a]

Started with Ramsay Hunt 2 months ago with right side facial paralysis. DX made due to presense of lesions on right side back of head. Put on Prednisone and Valtrex, cleared up in 4 weeks. A week after dx of RHS noticed sensation changes in lower legs mainly decreased sensation. Had MRI-cervical/thoracic (normal); had LP (normal); blood work (normal); told to wait, nerves probably damaged by virus and would heal.  Worse now, tingling in toes and hands, aching muslces, numbness in hands and feet. NCS done on right leg abnormal, DX with Demyelinating Neuropathy; again told to wait this would heal since due to virus which is now under control. Asked if this were immune response to virus told we would never know but both are self limiting and would heal within 6 months.  Minor muscle twitching began in both legs two days ago, doc has ordered EMG study done (2/2/03). Twitching is not visible nor can i feel it when i touch but seems so active it keeps me up at night; restlessness?I have requested a brain MRI on advise from a friend (internal med specialist in NYC) but has not been ordered by my neuro yet.Have some continuing problems with head:some minor weakness in face remains with frequent aching; ears especially painful at times and headaches are very common;also get decreased sensation in face, back neck, scalp and forehead (feels like a tight cap at times) when this happens eyes ache. Must point out these symptoms are sporadic, few days on, few days off; except head/ear ache that are more common. What do i do now? Is this developing ALS, GBS, CIDP; i just don't know? HELP!!

[Ron3]

Hi Steve,

Is it possible that you had two problems at the same time?

A lot of your symptoms are very close to those of Lyme Disease.
It doesn't sound like anyone has even mentioned this possibility
except to say that a virus may be at fault.. (You WERE treated for a virus that causes Bells Palsy and that other neuropathy.)
Viruses are usually self limiting but you seem to be getting progressively worse which points to a possible infection.

If you had a flu-like illness before all this began and then seemed to get better for a short while it is not necessary to have had the telltale bulls eye rash at a tick bite location
to be infected.  Only about half of those bitten have the rash
and doctors can still deny the possibility of Lyme unless they
saw the rash for themselves.  People often forget to take a picture of the rash, sadly resulting in no diagnosis.

It might be time to get a referral to an infectious disease specialist and get some tests.

Here is a link that explains the signs and treatment of Lyme.
The longer you wait, the worse the outcome, so don't put it off.

http://www.drmirkin.com/morehealth/8233.html

Take care because you are your own best advocate..
Ron

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

Please keep in mind I have not reviewed your diagnostic studies nor have I examined you, but it doesn't sound at all like ALS. The feelings of muscle twitching may be related to the nerve irritation/damage that is currently manifest as numb/tingling in your limbs.  It's very possible that it's an autoimmune mediated peripheral neuropathy related to your recent bout with RHS. The course of it is too long for the typical case of GBS, especially if it's continuing to get worse 5-6 weeks after it started.  If however, the symptoms peaked at about 3weeks and are stable, and if there was increased protein in the spinal fluid, then GBS is a possibility.  CIDP (a more chronic form) is also a possibility.  Herpes itself can cause a viral peripheral neuropathy. Special studies should have been done with the spinal tap such as cultures for herpes simplex, zoster, and immune panel. Extensive bloodwork should also have been done.  If this is continuing to get worse and is affecting your daily life, get a second opinion at a major academic hospital with a neuromuscular specialist sooner rather than later.  In the meantime, neurontin may be helpful for the nerve pain. Good luck.