I am new to the community. The following is about my wife. Forgive me, but it is long and detailed, and deliberately so because I am hoping that with this information someone might be able to point me in a new direction -- her doctors have hit a wall. My wife was diagnosed with Multiple Sclerosis in September 2004. At the time she was 54 years old. She has been receiving Avonex injections from then to the present time. In September 2005 she suffered a hemorrhagic stroke that was complicated by a haematoma causing severe brain injury. She survived the surgery to remove the haematoma but, as a result of the CVA, she suffered paralysis on the right side and aphasia. A folely catheter was inserted at the time of the stroke and she has continued with the folely since then. She spent two months in acute rehab followed, in November 2005, by four months in sub-acute rehab. By May 2006, she was transitioned to long term care. The road to improvement was extremely slow and limited, but she was making some slight improvement regarding cognitive functions between May 2006 and August 2007. No improvement regarding mobility, remained with the folely catheter, but gradually went from pureed food to being able to chew and swallow whole food. However, she was unable to sit up on her own or move her body, with the exception of her left arm, left leg and 70% range of motion in her neck.
In or about December 2005 she began to exhibit severe spasms in her abdominal area that would escalate to a point where the spasms would reverberate throughout her body, her heart rate and blood pressure would increase significantly and oxygen saturation dropped. Long story short, this was originally diagnosed as focal seizure activity resulting from the CVA injury. She was in and out of the hospital between between December 2005 and June 2007 for various issues, and frequently b/c of the spasms, which could not be controlled even with a panoply of anti-convlusive medications and, when episodes would occur, Ativan. In August 2007 she had a severe attack, was taken to the ER and intebated. She reamined on the ventilator and about a week later a tracheotomy was performed. For the next 11 months she moved between ICU and Respiratory Care, on and off the ventilator, with the ongoing "seizure" activity that had become more frequent and pronounced. During this period she has been on and off the ventilator, and receives her food and PO medications through a G tube. Two months ago there was a very severe "seizure episode" and she was transferred to ICU. New EEG/Video studies were performed and the diagnosis was changed to SPINAL MYOCLONUS emanating from the MS!!!! She had been on numerous anti-seizure medications, which were discontinued and other meds were introduced to control th spasms. With respect to the spams, presently she is receiving Ativan IV and Magnesium Sulfate IV, as well as Baclofen PO and Dantralene PO through the G Tube. Even with this regimen, the spasms are not totally prevented. Earlier this week she had a very bad attack that lasted for hours and they decided to try Nimbex IV, a parlytic agent that did quell the spasms after about 15 minutes. Today, I was told that at this juncture her Neurologists and other doctors are at a loss to know what else to try to do to control the situation. It appears that they are concluding she cannot be removed from the IV administration of medications and will need to remain on the vent. Therefore, she cannot return to the rehab/ nursing home setting. The discussion now seems be moving towards transfer to a Long Term Acute Care Hospital. DOES ANYONE HAVE EXPERIENCE WITH SPINAL MYOCLONUS, AND PARTICULARLY ITS MANIFESTATION WITH SEVERE ABDOMINAL SPASMS...AND IS THERE A MEDICATION OR PROCEDURE THAT MIGHT BE CONSIDERED, WHICH I HAVE NOT MENTIONED, THAT SHOULD BE CONSIDERED? Thank you.