I will be thinking of you Michelle and saying a few prayers that your treatments go smoothly and that your vision returns to normal. HUGS


Heather


On Wed, Jan 25, 2012 at 2:13 PM, Terry Vaccaro <

Michelle,


A prayer for your well being as well as only good and sweet thoughts.





Sent from my iPad





On Jan 25, 2012, at 11:07 AM, 




> Please keep our fellow member Michelle in your thoughts and prayers.  She is currently hospitalised undergoing plasmapheresis, having experienced problems with her vision.  Her first treatment is beginning very shortly.  She will be phoning this evening and I'll be sure to post an update then.

>


> Gracie


>

So, I am feeling like 100% better :D the antibiotics seem to be doing the trick. Still a bit tired but NOTHING compared to how I was feeling! I am so relieved! I go to see my neuro tomorrow for a 'checkup' since of the ON again, hopefully it goes well. I got an email from Dr. Greenbergs appointment/records people ... just about all of my medical records have arrived they are just waiting on my spinal tap results and then they said they can go ahead and schedule my appointment for the consultation. I'll update after my appt tomorrow. I hope everyone is doing well! xxx

Goodmorning my dear devics family! I hope that everyone is doing well thismorning. I wanted to update. I no longer have the pain behind my eye but I do still have a considerable amount of blurriness though not as bad as it was at first. I would have to say 30% better than it was ... but still enough of a bother to get in the way with getting work done, etc. I am on the tapering dose of prednisone now so hopefully it will clear up so I can see. The last time I had ON was in my other eye and it took months to get back to where I could actually see something other than black ... so I am keeping my fingers, toes, and eyes crossed that it wont take that long this time. I see my regular optho on the 9th and he is supposed to speak with my neuro about my progress. I did also get an email out to Dr. Greenberg letting him know what was going on and he feels that the treatment I am on at the moment (IVSM and Pred) are the right route at the moment ... other than that I am okay apart from the IVSM side effects, exhausted yet cant sleep, the beautiful moon face, hives, lol. I am a beautiful mess lately. Anyway, I just wanted to update! Hope all is well with all of you!!! Have a good day!!!

Hi ... I am going to be starting my copy soon too. Well, after I finish the book I am reading now anyway (Sing You Home, by Jodi Picoult). It does look like a good read though. 


~ Heather 













 


On Sun, Nov 13, 2011 at 8:02 PM, Grace <



Great Lin!  I'm going to start it

either tonight or tomorrow.  Tomorrow drop me an email to let me know

how far into it you are so that I can catch up.  :-)
 
Gracie

When my grandfather had shingles they treated him with neurontin as well. I am hoping that the pain is manageable, and am relieved that they said you should be okay to travel to the conference as I am soooo looking forward to meeting you!!! xxx




On Wed, Oct 26, 2011 at 1:42 PM, Burton Silver <


Hi Gracie,





I f you start getting any soreness then gabapentin usually prevents post herpetic neuralgia pain which can linger.


Actually some  dermatologists  have started to treat all new shingles patients with gabapentin  prophylactically at the same time that they start the acyclovar or the the Valtrex.





Heal rapidly,





Burt









On Oct 26, 2011, at 12:25 PM, Grace wrote:





> I am feeling so relieved.  What we originally thought was a bad medication


> reaction to a new drug---isn't.  Instead, it's shingles.  I finally went to


> the hospital last night as I just couldn't stand it.  They were even forming


> on the inside of my lower lip.  The ER gave me a shot of steroids in the


> behind, and scripts for Acyclovir and a Medrol dose pack.  Thankfully, I'll


> now be able to go back on my new medication.  The ER assured me that we


> caught it in time and that I'll be in good shape to attend the conference,


> which was one of my biggest concerns.  I want to learn as much as I can


> about NMO.  Also, I can't wait to see all of my old NMO friends, and of


> course the new friends that we've made here too.


>


> Gracie


>


>


>

Appointment Update ...

My appointment went very well. I feel like I walked away with more answers today than I have in a very very long time! We spent probably two hours pouring over my medical history, current history, all my files, etc. And ... she gave me a diagnosis! NMO Spectrum Disorder. She ordered a million more blood tests (15 tubes) and ordered new MRI's (brain, cspine, tspine, and lumbar). And, she is sending my information to Dr. Wingerchuk (sp?) to help her decide which treatment to go on. Right now she thinks Imuran would be the right choice, but she will let me know at my next appointments. (I see her again in a month, and then the month after that) All in all the appointment went really well ... I really liked her!

As for the hiccups, she feels its a flare of the disease and she said we will watch it closely. That is why I guess she wants all new MRI's to see if there is any more activity.

Well I am off to take a nap since I just got home from my 7:30 appointment ...

My new neuros office called thismorning ... quite concerned about the hiccupping! So, I am scheduled for an appointment at 7:30 AM on Wednesday ... hopefully its just hiccuping and nothing more serious! xxx

Hi! I am going to be going to the NMO patient day this year! I am so excited about going and meeting so many of you!!

Question, what should I expect and what type of clothing is appropriate?

I cannot wait to meet those of you that will be there, you have been such a beacon in my life!

So, I guess my appt went well. My neuro/opth, Dr. Zayden, did a differnt scan (that I didnt have done before) an OCT and he was able to see the damage done to my left optic nerve. The best way to discribe it is to look at a pie chart and the whole right half was shaded as being damaged :(

So, he is meeting with my neuro, Dr. Heyman, tomorrow to discuss my case and determine where to go from here. He said since I dont actually 'fit' into the dx categories for either MS or NMO it will be up to Dr. Heyman to determine dx and treatment. So, they told me I should expect to hear from Dr. Heyman's nurse Margie tomorrow afternoon or the next day at the latest on what he decides. Although I didnt get an actual dx today I at least know that they were able to see the actual damage and hopefully that will help me move further a few steps. *heres hoping right?*

Well, today was a very loooong day. I just got home now, but I wanted to update everyone. I think it is time for me to go and rest up.

Hope everyone has a good night!

Heather