central pontine myelinolysis

Question

Would like to know if  any research is being done on this disease on the brain stem (pons).  I have it plus it has caused down beat nystagmus which prevents me from driving.  The psychological impact is terrible.  I also would like to find someone with this disease.  So far I have not.

Luigi412 · Answer

A related discussion, Central Pontine Myelinosis was started.

CCF Neuro[P] MD, RPS · Answer

Dear Ottilie:

No, currently there is no know substance to help remyelinate axons.  Sorry that there isn't.

CCF Neuro MD

Ottilie · Answer

Is there any type of medication or herbs I can take to help restore myelin or at least control my imbalance and nystagmus?  Thank you

CCF Neuro[P] MD, RPS · Answer

Dear Ottile:

No, there is no type of surgery to help this condition.

CCF Neuro MD

Ottilie · Answer

Thank you for answering my questions.  I really don't know when things happened but I have had this about 2 years.  Is there any chance of improvement or surgery I can undergo to correct this?  My life has been turned upside down.

Thank you

CCF Neuro[P] MD, RPS · Answer

Dear Ottilie:

Central pontine myelinosis is usually results from changes in the osmolarity (electrolyte and protein concentration) in the brain versus the blood stream.  The abnormal difference between the two causes the myelin surrounding the nerve processes to become unraveled.  This inturn causes dysfunction of the nerves in this area.  This is not a disease, but the result from an abnormality.

Pontine problems can also arise from stroke in the pons.  This will give similar symptoms (although much more focal, such as only downbeat mystagmus).  If the stroke is large enough, it can cause complete loss of most movement below the eyes.

So, problems in the pons are usually the result of something.  

Sincerely,

CCF Neuro MD

central pontine myelinolysis

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