Emotional highs And lows !!!!!

[Guest guest]

I tell you what sometimes i feel like i am on a roller coaster at times it seems

, trying to exsplain whats going on with me to my family is like talking greek

,at times but any way i had to find a new neurologist that would take time ,

down in my area it seems like that you have to teach the Dr your self i am

finding that more and more the Drs are really just Out there because they really

don,t know what when how and where , and are learning and researching as they go

along with you , but thanks to everyone for sharing . Tim in North Fl

[Guest guest]

I know exactly how you feel. When was first diagnosed or mis-diagnosed they said it was seizure disorder, From what we now know seizures were a symptom. Unfortunately the seizure meds worked for a number of years as the granulomas in her head got larger and suddenly all hell broke loose. It took my insistence and finally a doctor out of NYU to help stabilize the problem. However by the time they were able to do that had lost an awful lot. We ended up with Cognitive fog, mobility issues, speech issues. I say that the patient and caregivers have to become proactive in their treatment and care. I truly believe that if the doctor we were seeing back in the early days had known more and been more vigilant we might not be in such a bad way today.

Take care of yourself and use the knowledge of the group here. I can honestly say that the group has helped immensely in answering questions I have had and offering their unending support. MattSubject: Emotional highs And lows !!!!!To: Neurosarcoidosis Date: Wednesday, February 17, 2010, 8:55 PM

I tell you what sometimes i feel like i am on a roller coaster at times it seems , trying to exsplain whats going on with me to my family is like talking greek ,at times but any way i had to find a new neurologist that would take time , down in my area it seems like that you have to teach the Dr your self i am finding that more and more the Drs are really just Out there because they really don,t know what when how and where , and are learning and researching as they go along with you , but thanks to everyone for sharing . Tim in North Fl