Here is My Question:
I have RRMS. Most terrible symptom is the dreaded MS hug or I call it the squeeze of death. I just read that Dr Oz once said it was the leading cause of death in MS. I know it’s stupid and I know the answer but just want to make sure. Is this inaccurate?
Also, have you heard of success using Botox injections in the intercostal muscles for the MS hug? If so, is that a treatment that can be long lasting and frequently done or is it a one time thing and only short term response.
That is completely inaccurate.
The MS hug is a sensory illusion that comes from prior demyelinating lesions in the posterior aspect to the spinal cord (typically the thoracic cord).
It does not lead to respiratory distress/arrest but it can feel awful.
I have not seen botox used for this indication; however, discussing potential therapies that can work on the spinal cord may be helpful: ie, specifically baclofen and trileptal could be considered.
Once symptoms improve over time, you could come off these symptomatic medicines.
Hope this helps.
A. Scott Nielsen MD MMSc
Neurologist and MS Specialist at Kaiser Permanente
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