I haven't posted in a WHILE. I've been led keeping up with the site, though, and continue to be inspired. Here's my update... So far I've been to 5 Neuros. Seems like we've tried every pill in the pharmacy. Currently taking 100 mg effexor, 20 mg inderal, and 50 mcg synthroid. We're going tomorrow for another LP and a cerebral arteriogram. I was diagnosed June of last year. She (New Neuro) is looking for signs of vasculitis, and if she does find them, I will have 3-5 days of intravenous medrol (yay!!) followed by who knows how long of oral medrol.
I try to work, I'm the admin at an Independent School, 16 years. I am (was) good at what I do. I try to work, but even when I'm there I'm not effective. The only way I've been able to keep my job is a very understanding board of directors and the best office staff a man could ask for. I can't say that without mentioning my wife. The past year (plus) has been tough to say the least. She has been supportive, but more importantly she has been patient. I have some pity party days, I'll admit that. She really tries to help me through them.
My head hurts me so bad most of the time. I more often have a killer headache than not. I literally do not remember the last day that I was totally headache free. I have narcotics, but that doesn't solve anything, when it wears off, you are right back where you started.
We are confident our new Neuro will make startling discoveries and respond with a plan for dramatic improvement and recovery!
Thanks for reading my ramble. We are SO looking forward to better days ahead.
Could it be possible that you are suffering from "rebound" headaches from the overuse of pain medication? My daughter was diagnosed with this recently. The doctor said that this can occur from taking too much pain medication, even Motrin and Tylenol. They gave her a migraine cocktail, which is a mixture of Benadryl, Toradol, and a couple of other drugs. She is doing much better with the headaches now. Hope you get better soon.
Thanks for the update. It's good to know that even when you're not responding that you're following along and being inspired by our members. Glad to hear you have support with your wife and your work and I hope that your progress continues. Don't be a stranger - hop in on some other discussions and keep us posted on your health.
My Neuro asked that, but after discussion we decided I was not over using the narcs. I knew from past experience how a rebound feels, not good, but they are different from my"usual" . Thanks!
My son Cody now 3 yrs old was diagnosed with adem 12 months ago, after 4 IVIG and plasma exchanges and 12 months on prednisolone Cody is now clinically better… Even though the neuro’s say his MRI and lumba punctures are all clear and that there is a high chance of a relapse, his daily life is and will continue to slowly improve… My little man was hospitalised 12 months ago and we thought he wasn’t going to survive he couldn’t walk or talk, the left side of his body was very limp and he was in hospital for 3 months straight… I would really love to thank this group for getting us through such a tough time and to the family and loved ones and of course the people living with adem, all of you are extremely strong…
Glad we could help you Beky!! Best of luck to Cody and the rest of your family. I hope the progress continues. Ken
beky miller said:
My son Cody now 3 yrs old was diagnosed with adem 12 months ago, after 4 IVIG and plasma exchanges and 12 months on prednisolone Cody is now clinically better... Even though the neuro's say his MRI and lumba punctures are all clear and that there is a high chance of a relapse, his daily life is and will continue to slowly improve... My little man was hospitalised 12 months ago and we thought he wasn't going to survive he couldn't walk or talk, the left side of his body was very limp and he was in hospital for 3 months straight... I would really love to thank this group for getting us through such a tough time and to the family and loved ones and of course the people living with adem, all of you are extremely strong...
Beky i can tell you that exact same symptons my son have, he was having a hard time walking or making any move with the entire left side of his body, he had a biopsy and thanks GOD he didnt have a tumor, he have ADEM, never heard of that in my entire life, we are now back in Mexico and he is doing great, besides the headaches, he is on PRENISOLONE to, everything happend on february of this year. Do your son have headaches with that medicine? im gald he is doing great and we have this incredible site to share our experience! beky miller said:
My son Cody now 3 yrs old was diagnosed with adem 12 months ago, after 4 IVIG and plasma exchanges and 12 months on prednisolone Cody is now clinically better... Even though the neuro's say his MRI and lumba punctures are all clear and that there is a high chance of a relapse, his daily life is and will continue to slowly improve... My little man was hospitalised 12 months ago and we thought he wasn't going to survive he couldn't walk or talk, the left side of his body was very limp and he was in hospital for 3 months straight... I would really love to thank this group for getting us through such a tough time and to the family and loved ones and of course the people living with adem, all of you are extremely strong...