Blank
Blank
Blank
Blank
Blank
Blank
Blank
Blank
Blank
Post It
Just a quick note to say hi!
You deserve a big bear hug!
You're in my thoughts all the time, but especially today.
Thank you for everything!
Welcome to our community!
You are in my thoughts and prayers.
Hope you feel better soon!
Congratulations! Time for a celebration...
Happy Birthday!
620923 tn?1452919248
09/10
Just a quick note to say hi!..glad to see u got some sleep.....we all need that : )

"selma"
Blank
Report
1336491 tn?1340623141
09/10
Hi Nick

look at this ladies story - look at pics etc  xxxx
jan xxx

http://chiariwise.com/index.html
Blank
Report
620923 tn?1452919248
09/10
Just a quick note to say hi!...I pray u r coming out of  a flare as well...do ask about getting checked for a autoimmune thyroid issue...just looking at TSH can appear all is normal...u need a FreeT3 and FreeT4 and TPO antibodies done in addition to TSH
Blank
Report
620923 tn?1452919248
09/10
Just a quick note to say hi!...hi...the bugs crawling could be a low level of vitamins and minerals...plus u may have a thyroid issue...have u had these items checked recently?

"selma"
Blank
Report
1336491 tn?1340623141
09/10
Hi Nicki

hope u feelin better babe

i rang the neuro and they got my LP results so dr ellis lookin at em tomoz and then makin appointment for me xxx

speak tomoz hun

jan xxx
Blank
Report
1386048 tn?1281015933
09/10
btw niki, how do you find the chiari forum?  i'm wondering if i should try and get my aunt to sign in...
xo michelle
Blank
Report
1386048 tn?1281015933
09/10
teehee...i can't believe med help sensors the word -s-u-c-k-s.  there, let's see if it takes it that way.
Blank
Report
1386048 tn?1281015933
09/10
niki, i can't believe you still have no date for your tests??  after being put on the priority list, you'd think something would've come through.  i feel for you so much, it's a horrible type of disappointment.  call them each and every day and if you hate to be that pushy (i have a real hard time with it) try and put that aside and just be as pushy as you possibly can.  it's wonderful having publicly funded health care, but the wait really ***** at times like these.  keep calling them and let me know when you manage an appt!
i'm not too, too horrible just now either, vertigo has let up quite a bit so i feel a bit more functional...sooo thinking of you niki!!
keep me posted!!
xo
Blank
Report
1375148 tn?1323170521
09/10
Hey hun thanks so much for the message, yeah pretty terrible day really, had this really REALLY sharp pain that went straight up my back last night and literally made me jump off the sofa, and my legs have been giving away all morning, plus the twinges in my right side, last time this happened i ended up in hospital, REALLY dont want that, so emotional today have cried loads. Fed up is not the word.  
Blank
Report
1386048 tn?1281015933
08/10
hey niki, that is such wonderful fabulous incredible news about the scans being moved up!!!
i've had a similar situation actually, the neuro i went to see was completely dismissive, yet still ordered mri of brain and spine due to one symptom of mine that i guess she actually took seriously.  anyway, initially got the word for brain-end of sept/ and spine-end of january!!  i was so devastated..as i can imagine you were.  to wait when our bodies are doing horribly strange things to us is a terrible feeling.  anyway, both have been moved up to early sept, so i'm delighted!  things take forever in canada too!!  anyway, great, great news.  i think of you often and truly hope you can get some relief from all of that pain soon.  let me know how it all goes!!!
xo michelle
Blank
Report
620923 tn?1452919248
08/10
Hope you feel better soon!so sorry u pain levels r up...praying u get it under control soon.

"selma"
Blank
Report
620923 tn?1452919248
08/10
Just a quick note to say hi! I think every chiarian has said that about drs...have u read the poem by Dr Oro?It is at the top of the forum...it shows and gives hope that there r drs that understand....well chiari cycles, so I am sure what is going on with u is chiari or chiari related.

"selma"
Blank
Report
620923 tn?1452919248
08/10
Just a quick note to say hi!...I always say we do not have a list of symptoms, but a manifesto....lol...

"selma"
Blank
Report
620923 tn?1452919248
08/10
Just a quick note to say hi!...I always say we do not have a list of symptoms, but a manifesto....lol...

"selma"
Blank
Report
620923 tn?1452919248
08/10
Just a quick note to say hi! I am working on a page for that now !!...no worries : )
Blank
Report
620923 tn?1452919248
08/10
Just a quick note to say hi!...sooooooooo glad u were able to find a list of drs on that site...please like I tell the members that use the list we have here, research all drs b4 u choose one....make sure they r true chiari drs...and u r comfortable with them.

Please send me a link to the list of Drs so I can offer it here as well : )

"selma"
Blank
Report
1412740 tn?1281745378
08/10
Hiya! Thanks for your message :)  I live in Kent but have so far found no Chiari specialists in the UK let alone specific areas!  There are no research facilities or centres over here, my GP didn't even know what it was I've been misdiagnosed since I was 12 now I'm 27!  If you do fond anyone good I'd love to hear about it, my consultant in London is erm.....not the best I don't even think he likes me!! Hope you are doing ok and have had a good weekend? Lou :) x x
Blank
Report
147426 tn?1317269232
08/10
Hi, Nikki, and we are glad you are with us, too.  Nope, I do not have Chiari, just MS.  It will be interesting to see how all your work ups play out.  Quix
Blank
Report
1386048 tn?1281015933
08/10
wow, that is a total disaster (your lp experience)!!  soooo sorry for you.  i remember my aunt vividly speaking about how awful it was for her too.  you'd think that would be a tip off for neuro's...even if the nurses are asking those various questions of you, perhaps they need to be educated about chiari and the difficulty it poses with drawing CSP too?  i suppose it is so rare that no one deems it common enough to make the effort to educate.  but anyone who's been through it could attest quite to the contrary!!  truly, best of luck to you niki on this journey.  if you ever want me to bounce some questions off of my aunt, she and i are quite close and i'd be happy to for you.
all the best, michelle
Blank
Report
1373769 tn?1278607210
08/10
You deserve a big bear hug! Thanks for the update and I am so sorry to hear your diagnosis. I am sure you are on a roller coaster of emotions right now. I really don't know anything about this one - can you tell me more and what are they planning to do for treatment? is there treatment?
Hang in there - you now know what you have and that is a start - a long journey to get there though I know.
Hugs!
Marty
Blank
Report
620923 tn?1452919248
08/10
Just a quick note to say hi!...all new things require a time of adjustment as we learn the ropes...no worries, if I can be of ne help to u on navigating let me know : )
It took me a while, in fact with all the new updates there r still things here I have no idea how to use correctly : )

"selma"
Blank
Report
620923 tn?1452919248
08/10
Welcome to our Chiari community! : ) "selma"
Blank
Report
1373769 tn?1278607210
07/10
Glad you made another appt - good luck - attempt to stay positive :)
Keep me posted!
Blank
Report