I haven't been on for a while as my body has been freaking! I have changed nuerologist! He is the best Dr I have had, this Wednesday I go for a Datscan it is new way to see what type of parkinsonism
As most of you know, I have been working with nuerologists for over a year trying to figure out why the left side of my brain has an unexplained mass. hopefully after the Dat scan, will give us the answers and I can be put on treatment plan and feel better!
Hi Jackie! Wishing you the very best when you get your scan. I hope it's nothing serious and you get some answers from the scan. I've never even hear of a Datscan before but thank God that it now exists so your doctor can find out more information.
You have a really good attitude as you're ready to be put on a treatment plan and feel better. Wow, you go, girl! Show us how it's done. And I'm sorry that your body has been freaking. That's a scary feeling, as well as annoying. I hope the Datscan gives your doctor good info to work with. Knowing what you're dealing with really does help! It takes away some of those fears of what's going on with us.
Good luck and please let us know how it goes!
Pet
Hi Jackie
I am praying that you find some answers to a very perplexing problem you have.
Jackie,
I will keep you in my thoughts and prayers. I hope the Datscan finds something and the doctors can provide you with some relief. Good Luck tomorrow!
Gentle Hugs,
Stacey
Hello all,
I had my DAT scan, it was worse than an MRI, this actually touches your nose as it is taking pictures, Im not used to having anything so close to my face! My Nuerologist said that the test was normal, and therefore he is looking at the new blood work, and wants to see me in 2 weeks. I really wish people would understand how awful it is to have the whole side of your body go numb at any given time. They have found cysts on both my spine and neck, one of the bones is on top of a disc, which causes the neck pain! I'm so tired and all I want are answers..... Why do I have a large abnormal spot on the left side of my brain! Sorry to be venting it is so difficult to just wait, this has been going on over a year! Thank you all for your support and hugs, it means a lot to me!
Jackie, I'm sorry you didn't get any answers. I do have a question that I really don't want to ask. Have they tested you for MS? The reason I ask is because my mom had progressive-remission MS. (I think that was the name) and when I was in 4th grade one side of her body would go numb for about 15 minutes at a time and then she would be fine. She would also feel like her tongue was swollen during this time. It wasn't until I was in 8th grade and she had an attack, what we called them, that we finally found out she had MS. I truly hope that is not was is happening to you but thought I would throw it out.
Gentle Hugs,
Stacey
Hey all , I just got an email from my new nuerologist telling me that he is referring me to John Hopkins in Baltimore, I'm. So sick of hosp, and doctors! He feels that my symptoms are to multiple and I need further testing! I am starting to feel as tho I'm being a lab rat for their tests. So frustrsted! Not Parkinsons :). Not MS so what the hell is it! I'm turning into a pin cushion
But Jackie, referring you to someone else is certainly better than just shrugging his shoulders and saying he can't find anything wrong with you. The diagnosis of fibromyalgia takes time because many of the symptoms are common to other diagnosis. So, too with your problem. So, be patient and be glad that your doctor is referring you.
I know how difficult and how frustrating it can be waiting for a diagnosis, but it seems like your doctor is caring and diligent on your behalf.
Praying all goes well w/u Jackie. Praying for us all. We are definitely an exceptional group.
((((HUGS)))
I agree! However I was diahnosed 2 years ago with fibro. I have an area on the left side of my brain tat is getting larger. These nuero docs keep referring me to other facilities because they can't figure out why I'm hsving all the symptoms. I just wnt frekin answers! I feel like I'm nut! They ruled out parkinsons, ms. I have to go to the mkvement disorder dept of nuerology at John Hopkins. Why is it so hard to figure this out!!!
Dear Jackie,
I haven't been around much, been taking care of my Mom, but was glad to find that you posted again. I live not too far from Hopkins, and have been there when my search 'to be fixed' began, to the Asst Prof of Adult Ortho spinal surgery.
He was one of the nicest man I have ever met, but told me surgery would only ever make me worse! Univ of MD, Asst Professor of Neuro Surgery echoed this as well, after I have been to a local ortho surgeon. That was nearly a decade ago, my GP still insists I need 2 different surgeries, and my Rheum says not yet! My Chiropractor can see both sides... So where am I?
Personally I think the teaching hospitals are the way to go for something this complicated and elusive, I hope and pray you get the right answers there, and they are on the ball with the treatment, so you can have a very good recovery!
Here is some very promising info on that dept at Hopkins, and an introduction to the staff, They are the very BEST, and have dedicated their lives to this specialized branch of Neurology!
http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_are...
I'm pulling for you girlfriend!
Love,
SK
SK,
How are you doing? I miss seeing your replies ! You always bring a smile to my face when I see your responses! I am anxious to see who I will be working at Hopkins. I promise to keep you all updated’. Take care of you and your mom! Thanks again for the info. Gentle hugs. Jackie