Hi, my name is Ed and I've joined this forum because of my daughter, Meg. Meg is 36 years old. She has been a type 1 diabetic since age 6. She was diagnosed with MS 8 years ago, while she was pregnant with my granddaughter. She's been treated over the years with Copaxone and other meds that i can't even recall right now. About a year and a half ago, her Neurologist introduced her to Tysabri and even though she was, I hope, aware of the possible side effects, decided to get the infusions. All went well until last March, when she was hospitalized complaining of severe stomach pain, vomiting and confusion. The hospital treated it as DKA and released her after 10 days. My wife and I mentioned to her attending physicians the fact that she was taking Tysabri and were greeted with blank stares. No one seemed interested. A week ago, I brought her to the emergency room of the same hospital with the same symptoms as in March. Again, she was admitted, stabilized and released 5 days later. I told the nurse on CCU that she had had an MRI 2 weeks previously and she obtained a fax of the report from the Neurologist. The report indicated cerebral ischemia. No one seemed concerned. During all this, I was speaking with an aquaintance who works at a University hospital in the mid-west. She asked an aquaintance of hers who is a Neurological Research Fellow at the same hospital what could be going on and was told to have her checked for PML and to get her off the Tysabri right away. Meg is going to the Neurologist tomorrow to confront (possibly bad choice of word) him about the possibility of PML.
That's the situation and we have some questions that someone can maybe answer. First, should she have been put on Tysabri at all with an immune system already compromised by diabetes? Second, Shouldn't she have been monitored closely during he treatment? She has not had that many MRIs over the last 8 years and only one over the last 18 months and none of those with contrast. Third, if she does turn out to have PML, what can we do?