Hey Tania, how have you been doing? Sorry long time no write. I often think about you. It seems like you are the only person who I have been able to connect with on this site. I've been feeling the same. No better, no worse.....can't even get my pcp/neuro to listen to me. Just the typical struggles of a person with neurological symptoms!?!
Hi Tania, I was just thinking about you wondering how you are doing since I havent heard from you in a while. I havent been coming to the forums as often. I just needed a break, plus I have nothing to add or offer people since I dont know what is going on with me. I have been feeling alittle better though, but these past days it been hot. My parasethia's have kicked up a notch, but nothing I cant handle. My dr put me on primdone for the tremors but I had such bad side effects I stopped taking it. I hope all is well for you and I am still praying for you my friend. XOXO!!
I AM SO HAPPY TO HEAR YOU ARE FEELING BETTER!!! Hopefully the Predisone will continuing working after you have to stop taking it. Or maybe the dr can keep you on it for a longer period of time at a low dosage. If you havent been reading in the forums lately there has been a lot of talk of Devic's. Some of the members have found a lot of information on it. I thought of you everytime I was reading them hoping you were reading them too. I've been having my ups and downs. It seems like I am at a stand still in finding out what is wrong with me. My tremors are getting worse. My PCP and his office thinks I have axiety. They gave me a speech on how axiety can cause my problems. I tell them over and over again I was not having it at the onset of my symptoms. They are not listening to me.
Hi Tania, I was just thinking about you. Hope your feeling better.
I found another website that might be of some help to you based on Devic's and its also a support group too. You should check it out. It also could help you get into some medical trials too.
How are you feeling? I hope my prayers are crossing over to you from the oceans. Im sorry your doctors appt was such a disappointment. Im kinda getting use to it, but its making me stronger. Alot more vocal on the test I need and the medication too. Do your research on everything and demand to get the help you need. Im giving you a big bear hug!!!!
I've been having my ups and downs myself. My doctor told me I had the approval from my insurance company to go to the Cleveland Clinic, when I called the insurance company to see what they will cover I was told I was denied. I felt so disappointed and deflatted. Now Im back at square 1 not knowing what do to. I just need to take acouple of days to get my thoughts together.
I hope your dr is able to give you the right meds. I know its frustrating not being able to do the things you want to do because I am in the same boat. Just going to work is a constant struggle for me. Tania Im praying for you. We are going to overcome our illness. Blessing to and your family and have a Happy V-Day.
Hi Tania, I was just thinking about you and wanted to leave you a note to let you know you are on my mind. I hope you are feeling better and Im praying for you.
Im sorry to hear everthing you are going through. I've been going through it for just about a year and its driving me insane. I dont know what to do. Thank you for posting. Im certainly going to start looking into Devic's Syndrome. Heres a link to a site I found a while back. Hope this can help you. God bless and I hope we can continue to keep in touch with each other.
Welcome to our community!
Hi. I just wanted to say hi and welcome you to the forum family. I know that you will make great friends here and find & give answers and support when needed.