Aa
I called about my neuro appt. got passed on to another doctor for review.
I called today to make an appointment with Dr. D., because I was told that her office would call and make an appointment with me yesterday. Now, mind you, the neurology department already passed me off to the epilepsy center once, before sending my file back to Dr. D.
The scheduler looked me up, and said that after Dr. D. reviewed my file, she decided that she thought it would be best if I was seen by an {{{{{{{{{{{{MS SPECIALIST}}}}}}}}}}}}}}!!!!!!!!!!!!!!!!!!!!, Dr.Y.
I asked how long it would be before I got a call to schedule, and the young woman said that she would talk to the right people and see if they can get the ball rolling a little faster, since I've been so patient. Thank heavens I didn't let my frustration show when I called them (several times).
I'm going to se an MS SPECIALIST! OMG, I see higher Tesla spine MRIs in my future! I'll try not to get my hopes up too high, but this is just amazing to me, another sense of validation in a medical world that gives out very little of it. Two neuros and my own wonderful PCP decided that I don't have MS, and my PCP didn't want to order tests related to MS. Because of non-textbook brain lesions, clear LP, relatively mild sx, and patchy areas on my spine written off as possible artifact, they wrote off the possibility of MS.
Whoo hoo, small victory! Heck, it feels big to me!
Just had to share my amazement and joy.
Kathy
The scheduler looked me up, and said that after Dr. D. reviewed my file, she decided that she thought it would be best if I was seen by an {{{{{{{{{{{{MS SPECIALIST}}}}}}}}}}}}}}!!!!!!!!!!!!!!!!!!!!, Dr.Y.
I asked how long it would be before I got a call to schedule, and the young woman said that she would talk to the right people and see if they can get the ball rolling a little faster, since I've been so patient. Thank heavens I didn't let my frustration show when I called them (several times).
I'm going to se an MS SPECIALIST! OMG, I see higher Tesla spine MRIs in my future! I'll try not to get my hopes up too high, but this is just amazing to me, another sense of validation in a medical world that gives out very little of it. Two neuros and my own wonderful PCP decided that I don't have MS, and my PCP didn't want to order tests related to MS. Because of non-textbook brain lesions, clear LP, relatively mild sx, and patchy areas on my spine written off as possible artifact, they wrote off the possibility of MS.
Whoo hoo, small victory! Heck, it feels big to me!
Just had to share my amazement and joy.
Kathy
Thanks for all the congratulations, pats on the back, and hopes and prayers for my finding my way to answers soon.
I have made it this far because of all of you propping me up when I was being dumped on and kicked to the curb.
You make the world a better place, my friends.
Kathy
I have made it this far because of all of you propping me up when I was being dumped on and kicked to the curb.
You make the world a better place, my friends.
Kathy
Congrats on the good news. I am so happy for you. Yeah !!!!!! I know you will but please keep us posted. I was feeling pretty puny till I read your news. Like wonko said. Someone getting answers helps me channel my anger in other ways. It also gives me hope tomorrow I can post good news about myself.
Congrats my friend. I am sending prayers your way for speedy answers .
Bless you kathy,
Mike
Congrats my friend. I am sending prayers your way for speedy answers .
Bless you kathy,
Mike
KATHY,
THIS IS GREAT NEWS FOR YOU AND I PRAY THEY GET YOU IN SOON.
IT JUST TAKES THE RIGHT DR. TO SEE A CLEAR PICTURE AND TO GET THE GEARS A TURNING.
WITH ALL THE MIX-UPS AT THIS FACILITY,IT JUST GOES TO SHOW THAT THINGS HAPPEN FOR A REASON.
IT SOUNDS LIKE THEY ARE GETTING YOU INTO THE RIGHT DR. AND HOPING YOU GET ANSWERS SOON.
T-LYNN
THIS IS GREAT NEWS FOR YOU AND I PRAY THEY GET YOU IN SOON.
IT JUST TAKES THE RIGHT DR. TO SEE A CLEAR PICTURE AND TO GET THE GEARS A TURNING.
WITH ALL THE MIX-UPS AT THIS FACILITY,IT JUST GOES TO SHOW THAT THINGS HAPPEN FOR A REASON.
IT SOUNDS LIKE THEY ARE GETTING YOU INTO THE RIGHT DR. AND HOPING YOU GET ANSWERS SOON.
T-LYNN
I am so happy that someone is finally getting on the ball for you! I hope it won't take long to see this dr. and it just goes to show that the squeaky wheel does get the grease...good for you girl...go for it!
Lots of HUgs,
Rena
Lots of HUgs,
Rena
I'm so happy that things are moving forward for you. What a blessing that is. Yipee!!!
I really hope all goes well with this new neuro!
Hugs
Moki
I really hope all goes well with this new neuro!
Hugs
Moki
Mahalo!
When I finally get the date for my appointment, I'll put together a file with all my MRIs and their results, my Timeline of symptoms, a list of questions, and anything else that may be helpful, and put it in a bag I have with flip-flops on the outside. On the day of my appointment, I will hang the bag on the front door, so I can't leave home without it!
I'll be taking my third trip to Maui on January 1, 2009. My best friend has a timeshare there, and loves to be on the beach on January first. When she found out that I had always wanted to hike in Haleakala crater, she arranged to take me in 2005, and now we make a habit of going every other year.
I love sitting on the balconey and watching the whales every morning. I used to do it drinking coffee, but since I got tremors in February, I haven't been able to drink caffeine without getting shakier, so I'll switch to herbal tea. We aren't far from a farmer's market, so we eat a lot of fresh papaya. Mmmm, I can hardly wait!
Do you like living in Maui? Does the heat bother you? It's actually such a pleasant temperature most of the time, but some people can't handle those temperature in the 80's. I guess I'm a little chatty this afternoon. I'm just happy, though tired. It's nice to meet you.
Take care,
Kathy
When I finally get the date for my appointment, I'll put together a file with all my MRIs and their results, my Timeline of symptoms, a list of questions, and anything else that may be helpful, and put it in a bag I have with flip-flops on the outside. On the day of my appointment, I will hang the bag on the front door, so I can't leave home without it!
I'll be taking my third trip to Maui on January 1, 2009. My best friend has a timeshare there, and loves to be on the beach on January first. When she found out that I had always wanted to hike in Haleakala crater, she arranged to take me in 2005, and now we make a habit of going every other year.
I love sitting on the balconey and watching the whales every morning. I used to do it drinking coffee, but since I got tremors in February, I haven't been able to drink caffeine without getting shakier, so I'll switch to herbal tea. We aren't far from a farmer's market, so we eat a lot of fresh papaya. Mmmm, I can hardly wait!
Do you like living in Maui? Does the heat bother you? It's actually such a pleasant temperature most of the time, but some people can't handle those temperature in the 80's. I guess I'm a little chatty this afternoon. I'm just happy, though tired. It's nice to meet you.
Take care,
Kathy
Aloha Kathy,
I seen your post, congrats! I seen a MS specialist a few weeks ago finally after so many different Dr's. What a pain, its kind of amazing how many people have MS symptoms but don't show the classic MS lesions.
Regarding my MS specialist - I was quite nervous to see her, then I left my notes at the hotel room, and was totally afraid to get the same yadda yadda disregarding treatment as I received from the other Drs. So I felt like a total schmuck. She didn't treat me as the other Dr's. I do believe if I hadn't been so nervous the appt would have been more fulfilling. Although, she scheduled a neuropsych test which I am waiting for, and the steroids. She told my general GP that if the steroids didn't help than they would start the betaseron.
If you make notes don't forget them:):)
MM
I seen your post, congrats! I seen a MS specialist a few weeks ago finally after so many different Dr's. What a pain, its kind of amazing how many people have MS symptoms but don't show the classic MS lesions.
Regarding my MS specialist - I was quite nervous to see her, then I left my notes at the hotel room, and was totally afraid to get the same yadda yadda disregarding treatment as I received from the other Drs. So I felt like a total schmuck. She didn't treat me as the other Dr's. I do believe if I hadn't been so nervous the appt would have been more fulfilling. Although, she scheduled a neuropsych test which I am waiting for, and the steroids. She told my general GP that if the steroids didn't help than they would start the betaseron.
If you make notes don't forget them:):)
MM
I'm still grinning! Especially after reading what Zilla wrote; good thing I went potty before I checked the forum!
It is strange to be so happy about seeing a doctor about something so serious, but I seriously want to take the best care of myself, my body, that is humanly possible, and that takes knowing for sure what is going on with it so I can use the right tools to accomplish that goal.
I'm going to see if I can find out anything about this specialist, and try to figure out the best way to approach her and get her to understand what I've been going through.
Hey, miracles do happen! :o)
Kathy
It is strange to be so happy about seeing a doctor about something so serious, but I seriously want to take the best care of myself, my body, that is humanly possible, and that takes knowing for sure what is going on with it so I can use the right tools to accomplish that goal.
I'm going to see if I can find out anything about this specialist, and try to figure out the best way to approach her and get her to understand what I've been going through.
Hey, miracles do happen! :o)
Kathy
I hate how we start to get happy over what is making us sad!
But that is what happens with this! It is so confusing to be un-diagnosed, esp. if your symptoms are not even under control.
I've glanced at your history, and boy, am I a dull and mild case in comparison. I really hope you can get some help, not just because you deserve it, but also for selfish reasons. Everytime I read about anyone getting some help and making some progress toward understanding and treating symptoms, it gives me hope that I'll get out of this mess!
I feel I spend too much time and energy trying to understand and figure out what is best. But it's like my whole body is stuck in "hyper sensitive" mode all the time, and there is just no escaping it!
I'm just posting this so that newer people may better understand the juxtaposition and confusion of wanting to be well, but needing an observable (like a test result) to validate long periods of time with discomforting, life-interupting symptoms.
Hope you get an appointment soon and glad that you were able to be patient on the phone. Whatever emotion I have (anger, grief, excitement) I always just do my best to channel it toward a productive and positive end. I think here your patience helped get you to this specialist, hopefully it goes well from here!
But that is what happens with this! It is so confusing to be un-diagnosed, esp. if your symptoms are not even under control.
I've glanced at your history, and boy, am I a dull and mild case in comparison. I really hope you can get some help, not just because you deserve it, but also for selfish reasons. Everytime I read about anyone getting some help and making some progress toward understanding and treating symptoms, it gives me hope that I'll get out of this mess!
I feel I spend too much time and energy trying to understand and figure out what is best. But it's like my whole body is stuck in "hyper sensitive" mode all the time, and there is just no escaping it!
I'm just posting this so that newer people may better understand the juxtaposition and confusion of wanting to be well, but needing an observable (like a test result) to validate long periods of time with discomforting, life-interupting symptoms.
Hope you get an appointment soon and glad that you were able to be patient on the phone. Whatever emotion I have (anger, grief, excitement) I always just do my best to channel it toward a productive and positive end. I think here your patience helped get you to this specialist, hopefully it goes well from here!
Hey, you guys! I just had the weirdest dream! Kathy called her doctor for a follow up appointment, and they told her that the doc was referring her to an MS SPECIALIST!!! Can you believe it? Somebody wake me! I'm at work!!! I'll be in so much trouble.....
Anyway, it would be great if your doc listened and paid attention, Kathy. Instead of just blowing you off as always...
If only dreams came true.....Hang in there!!
Zilla* (Winkle, winkle*)
Anyway, it would be great if your doc listened and paid attention, Kathy. Instead of just blowing you off as always...
If only dreams came true.....Hang in there!!
Zilla* (Winkle, winkle*)
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