Re: So Frustrated and scared.

[Guest guest]

Dear , I hope you have learned a lot about neurosarcoidosis by sharing with the group. You can now truly understand what your brother is going through. Does he have good doctors? Have they tried different medications? I don't know closely you follow his medical charts and all. But there are a lot of new and different combinations of medications out there. (You said his current meds were failing him and his tests were saying he was looking worse.) Sometimes as you have noticed on this list, we have had to change doctors and specialists because of inadequancy (sp?) . I myself have gone to 12 drs in 3 years before finding the right ones to help me. I have a neurologist, rheumotologist, a phsycologist and a PCP. It took a lot of medications and switching them around before I was put on maintenance drugs. I also know

what he is going through losing his job and all. I went through the same thing. Working for 20+ years , and 17 of them for the same company , is was so hard to leave my job. It was like my self identity was being pulled away from me. My job was everything to me and I still miss it to this day. (It's been 3 years since I have been gone.) It's very hard to admit you can't handle your position anymore. But its even harder to admit that you physically or mentally can't handle it either. Again, I am glad you found us. Good luck in having your mother and brother joining us as well. We will be here. Hugs, Debbie wrote: Dear Debbie, I thank you for responding..I was so frustrated and scared when I heard about this..and really I vent and talk to my friends..but honestly I know they don't understand but I know they are there for me...and like many people know nothing about neurosarcoidosis and I for one was no different and still I don't really uderstand.. My mom is very upset and all I could say is that he is a grown man and makes his own choices and she is there for him and to give him support and her opionion..My mom says he isn't ready to give up his life as he knew..and I told her that maybe the life he knew is not the same but he doesn't have to give up his life..I know from reading on board..that some here do volunteer work and work....but I just don't understand why he'd go into driving a huge truck like that...to risk his own life and really others on the road..and I'm so confused and I don't know how

he'd even get a truckers liscense..I don't know...I'm sorry that you had similiar situations and can only imagine how terribly scarey it would be..I hope it is a one time situation with my brother..but highly doubt it...I know my brother isn't responding well to the meds he's on...and was told that his last scan appears worse.. I'm sorry to bother on this board...but turned to you all...cause I know you'd understand.. I will send your post Debbie to my mother and I pray that this will give my brother the strength to join your group..I know it would be so good for him...and I will also with my mother..but I doubt she will..she was recently diagnosed with COPD and Emphasema and is on oxygen 85 percent of the day..and so her life change is taking alot of adjustment and she needs the support herself for that also... Thanks so much, Hugs, Debbie

wrote: Dear , I am sorry to say that I have had 3 car accidents since I have been ill. I have simply blacked out at the wheel. The first one was before I was on meds so I couldn't blame on the medication. The other two who knows. I was on meds at the time. I have been lucky in that I have been alone all 3 times and have not been seriously hurt. God has been looking over me in that respect. One time I hit a telephone pole and it came right near the passenger side beside me. Close call. After that, I wasn't allowed to drive for a period of time. Now I can only go short distances. Thank God it all worked out for your brother, Jim. I just wanted to relay

my story so you could take it into account when it comes to him and driving. This group would be wonderful for him to get the support and the information he needs to hear. We are all very down to earth and comfortable easy going people that he could relax with and ask questions and get answers. But I know how stubborn people can be sometimes especially when it comes to their health. It sounds like he is in a state of denial right now. We have all felt that at one time or another. We are glad to have you here and hope your mother joins on as well to give support for this illness. We are here to answer questions and give out information, as much as you need. I hope your brother gets the medical attention that he needs . Hugs, Debbie wrote: Hi Everyone, I haven't posted anything since I joined this group but have been reading alot and trying to eduacate myself....I joined this board due to my brother having neurosarcoid...My brother lives in Seattle now and his wife is a physicians assistant..well my mother calls me late last night to inform me that my brother is driving a truck! I couldn't believe this..this is a long story my brother and I aren't close and won't get into it all cause sure no one really wants to hear..but either way I do love my brother and care very much for what is going on with him...I talk to my mother daily and she knows how things are..I've sent my mom this site to hopefully get my brother to join and also to email Matt since I know you also live in Seattle...but I know my brother and doesn't and won't try to get help and support from others who understand what he is going through..but back to my

story..I was shocked to even hear number one my brother working..cause when he was diagnosed and almost died....the doctor told my brother once he's up and able to to go down to SSI and apply...cause he prob wouldn't be able to work with this disease...I do know my brother has it throughout his body and not just lungs...he used to be a finance manager at a car dealership..well he had to quit cause he'd be working a deal and then he'd forget what he was doing...and wouldn't be able to finish or close a deal.... so I guess he felt only thing he could do was drive a 18 wheeler..??i'm shocked and in disbelief by all this....well it gets worse....he was driving and had horrible headache and pulled over in a truck stop and crawled back into cab to sleep and when he woke up....he couldn't remember who he was/where he was/nothing......he got out of truck looked at it..still no recall,pulled out his drivers liscense and knew

who at that point..but really no recall on that, then got his cell phone and called the last number he dialed which was his wife...she wasn't available so he left message...when she tried to call back...i guess my brothers phone was dead..so she called the police and not sure on time frame of all this..but as he was at truck stop a policeman pulled up and asked if he was Jim and he said yes and police said..your wife has filed a missing person....firstly..I'm worried and upset by all this.. I mean I don't even understand how he'd even get a liscense to drive a truck..I don't understand any of this..Thanks for listening.Hugs,