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Weekly Schedule - Cinco de Mayo
What's on the docket for us this week? What do we need to know to help support you?
Tuesday Back to Cleveland Clinic for follow up with the MS Center neuro now that she has almost all of my records and time line. Woo hoo I finally got one put together!
Wednesday my first ever neuro-opthamologist appt (in Cleveland too)
Thursday brain & c-spine MRI's ordered by my regular neuro
Friday work and then I think I will need sleep
Erin :)
Nada, nada, un mucho nada...Except that I did receive my NIH inpatient testing schedule by email today. I'm looking forward to getting another set of eyes (institute) and my favorite NP to look more into my case.
Nothing, other than re-cuperating from the LP today, hopefully good to work by wednesday.
Shelley
Shelley
Monday & Thursday: Physical Therapy
As sad as it is, I am seeking disability and will be working on that this week.
Deborah
As sad as it is, I am seeking disability and will be working on that this week.
Deborah
I have an appt. with a Dr. for the SSD office. Please pray this goes well!! I'm trying not to be too nervous but its hard. With no diagnosis yet my chances are not real good. SS office is sending me to a Chiropractor, has anyone heard of this??I don't see my new GP again until the 18th & who knows mabey this chiropractor will see something that the others havent!!
Today, my first vestibular PT appointment.
So far, all I have scheduled for the rest of the week is some errands and waiting for the radiologist's report from my 3T MRIs.
So far, all I have scheduled for the rest of the week is some errands and waiting for the radiologist's report from my 3T MRIs.
First appointment with new Internal Medacine doc. When I made tha appointment, I was just looking for someone to be in-charge of allof the specalists that I go to. I need someone to know and care about everything that is going on with me. Lately, I have been flushing and swelling. When this happens I am alsually swollen in the neck, arms, face and most recently the legs, and my heart rate is around 100. Oh bother, if it is not onw thing, it is another. as fate would have it, I lost about 2lbs of water weight yesterday. I hope tht she believes me tomorrow.
Please ask Calabresi about using OCT not just for assessing progression in MS, but also as an additional diagnostic tool, especially to turn 'probables' into 'definites.'
Have a great time!
ess
Have a great time!
ess
And I thought I was up early, @ 5:30am mountain time. I awakened an hour ago to my doorbell ringing several times. Scared the cr*p out of me, as my husband leaves for work at 5am. Always worried the RCMP will be at my door to tell me he's been in an accident. Anyway relieved to see it was my next door neighbor, standing there in her bathrobe, slippers and shower cap!! She had locked herself out of her basement apt. We tried calling her landlord but couldn't reach him, so she borrowed some clothes and rushed off to catch the bus to work. BTW this is the first time I'd met her, actually first time I'd ever aid eyes on her!
So now I'm up now with extra time on my hands. Too tired to exercise but too awake to go back to bed. Good time to catch up on the forum.
Tomorrow I see my GP, am going to get her opinion on following up with my neuro re: my negative NMO-IgG test. Will get her take on whether I ought to send him a letter or whether she should write/call him, re: any follow up testing that could be done to be more confident in the negative result.
Then Thursday I am L.A. bound! Off to the fundraiser for the Nancy Davis Foundation for MS research, with three of my best girlfriends. According to the press release, some of the attendees include: Tommy Hilfiger, Scarlett Johansson, Tom Arnold, Teri Garr, Rob Lowe, Avril Lavigne, Paris Hilton, Nicole Richie, Rob Lowe, Kelsey Grammar, Virginia Madsen, Jewel, Amy Smart, Tom Arnold, with live music by the Eagles.
The following morning is a roundtable session with the neurologists who receive funding from this foundation which supports their research and collaboration with other top MS research institutions in the U.S. They are:
Brigham & Women’s Hospital, Harvard – Howard Weiner, M.D.
Johns Hopkins Hospital – Peter A. Calabresi, MD
The Mellen Center, Cleveland, Ohio – Richard Rudick, M.D.
Oregon Health Sciences University – Dennis N. Bourdette, M.D.
University of California, San Francisco – Stephen Hauser, M.D.
University of Southern California – Leslie Weiner, M.D.
Yale University School of Medicine – Stephen G. Waxman, M.D., Ph.D.
They will do presentations and make time to talk one on one to participants. I am trying to come up with 2 or 3 good questions if I do get the chance ask any. Of course I will be getting their take on diagnosing NMO. Any other suggestions?
So now I'm up now with extra time on my hands. Too tired to exercise but too awake to go back to bed. Good time to catch up on the forum.
Tomorrow I see my GP, am going to get her opinion on following up with my neuro re: my negative NMO-IgG test. Will get her take on whether I ought to send him a letter or whether she should write/call him, re: any follow up testing that could be done to be more confident in the negative result.
Then Thursday I am L.A. bound! Off to the fundraiser for the Nancy Davis Foundation for MS research, with three of my best girlfriends. According to the press release, some of the attendees include: Tommy Hilfiger, Scarlett Johansson, Tom Arnold, Teri Garr, Rob Lowe, Avril Lavigne, Paris Hilton, Nicole Richie, Rob Lowe, Kelsey Grammar, Virginia Madsen, Jewel, Amy Smart, Tom Arnold, with live music by the Eagles.
The following morning is a roundtable session with the neurologists who receive funding from this foundation which supports their research and collaboration with other top MS research institutions in the U.S. They are:
Brigham & Women’s Hospital, Harvard – Howard Weiner, M.D.
Johns Hopkins Hospital – Peter A. Calabresi, MD
The Mellen Center, Cleveland, Ohio – Richard Rudick, M.D.
Oregon Health Sciences University – Dennis N. Bourdette, M.D.
University of California, San Francisco – Stephen Hauser, M.D.
University of Southern California – Leslie Weiner, M.D.
Yale University School of Medicine – Stephen G. Waxman, M.D., Ph.D.
They will do presentations and make time to talk one on one to participants. I am trying to come up with 2 or 3 good questions if I do get the chance ask any. Of course I will be getting their take on diagnosing NMO. Any other suggestions?
Monday- return to work and face the music for "working remotely" and then not billing enough hours due to fatigue, BP issues and medicine merry-go round.
Afternoon appt. with BP doc. Call to Dr. L (neuro) because of chills and fever -possible copaxone reaction
Wed.-PT if BP is behaving itself
Fri.- PT " "
Afternoon appt. with BP doc. Call to Dr. L (neuro) because of chills and fever -possible copaxone reaction
Wed.-PT if BP is behaving itself
Fri.- PT " "
Hey, I thought we'd agreed to Hold the Mayo! But then someone suggested we Sinko de Mayo, even better!!.
ess
ess
I have my bi-annual neuro appointment on Thursday. I am sure that she will say that I am still in Limboland.
However, she did state last time that if my MRIs did not show any new lesions, she would want ANOTHER LP. The procedure isn't that bad, it is just the week long headache afterwards.
But having another LP would definitely rule-in or rule-out ADEM, which is what she thinks I have (or had) really NOT sure of the verb tense!!!
So once again, the "wait and see" game.
However, she did state last time that if my MRIs did not show any new lesions, she would want ANOTHER LP. The procedure isn't that bad, it is just the week long headache afterwards.
But having another LP would definitely rule-in or rule-out ADEM, which is what she thinks I have (or had) really NOT sure of the verb tense!!!
So once again, the "wait and see" game.
Hello,
Today I have an appt scheduled with my rheumy; trying to get some much needed answers. I'm vascillating between Lupus and/or MS (or what the heck, maybe neither) but nonetheless trying to get an answer either way. I've had problems with constant UTIs, bladder, kidney infections since I was 17. At 17 I was told to stay out of the sun when twice in one year I developed 2nd degree burns on my face and first on my body when I went out into the sun for more than 1/2 hour (even with mega sun blocker on). Combined with all the all symptoms I have it so much looks like Lupus except for the stumper.... negative ANA tests. Anyway in some of my readings this week I read that Lupus can cause demylienation too?! I even confirmed this with a dr friend yesterday (he is a pediatric ENT). So today, armed with an hour in the sun yesterday, I am off to see my rheumy, hopefully have him do an ANA test and see what the results are.
Let's see.... then I have PT a couple of days this week (I wonder how long this will go on for.... it's not cheap!).
Oh and National Prayer Day on Thursday, yep, need to do lots of that.
Hope everyone is looking forward to some nice spring weather - I know I love seeing the pretty flowers it brings.
All the best.
Today I have an appt scheduled with my rheumy; trying to get some much needed answers. I'm vascillating between Lupus and/or MS (or what the heck, maybe neither) but nonetheless trying to get an answer either way. I've had problems with constant UTIs, bladder, kidney infections since I was 17. At 17 I was told to stay out of the sun when twice in one year I developed 2nd degree burns on my face and first on my body when I went out into the sun for more than 1/2 hour (even with mega sun blocker on). Combined with all the all symptoms I have it so much looks like Lupus except for the stumper.... negative ANA tests. Anyway in some of my readings this week I read that Lupus can cause demylienation too?! I even confirmed this with a dr friend yesterday (he is a pediatric ENT). So today, armed with an hour in the sun yesterday, I am off to see my rheumy, hopefully have him do an ANA test and see what the results are.
Let's see.... then I have PT a couple of days this week (I wonder how long this will go on for.... it's not cheap!).
Oh and National Prayer Day on Thursday, yep, need to do lots of that.
Hope everyone is looking forward to some nice spring weather - I know I love seeing the pretty flowers it brings.
All the best.
Well, for a west coaster, you're up early. Or late, maybe.
I'm rather struck by the absence of anything scheduled for this week in my book. I'll make a call or two trying to wrench test reports out of the hands of assorted offices, notably the evoked potentials and neuro-psych assessments. Next scheduled appointment is with a neuro-ophthalmologist, but that's not until the 15th (even if I previously thought it was on the 5th).
I do need to spend some time doing some final paperwork for the late Mrs. :( It'll not be that big of a deal, I don't believe.
I'm rather struck by the absence of anything scheduled for this week in my book. I'll make a call or two trying to wrench test reports out of the hands of assorted offices, notably the evoked potentials and neuro-psych assessments. Next scheduled appointment is with a neuro-ophthalmologist, but that's not until the 15th (even if I previously thought it was on the 5th).
I do need to spend some time doing some final paperwork for the late Mrs. :( It'll not be that big of a deal, I don't believe.
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