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Not Looking Forward To Tuesday

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Posted 3/3/2007 2:21 AM (GMT 0)
     Ok, so I have an appt. @ the MS Clinic on Tues.  I'm so nervous.  I have a 140 minute MRI in the morning, then see the Team in the afternoon.  Just to refresh memories, last time I saw the NP he said he would discuss with the team about starting me on injections.  I would assume if they start me on injections then I have MS.

     They also sent me forms in the mail with a syptoms check list....  Theres a spot for questions I may want to ask the Neuro.  My hubby is coming with me for the first time.  I think he is as nervous as I am. 

     I just forgot what I was thinking........I know it has been a long road, and I know I want a final answer...... But this is a serious diagnosis....  I have been tested for everything under the sun..... Even saw a infectious disease specialist.... Endo doc, reumatoidologist... (sorry for spelling )  Neg (past) mri..doc said only couple of little lesions nothing to worry about....Positive LP...Positive nuero signs and symptoms.....  Neg EVP ....  It's just a buggah...

    You all have been so supportive, and helpful this past year I have been here.  I'm not sure what my response will be when they tell me either way...  I know you all will be there for me, and thank you.  I also know my journey through all this will help those just starting out. 

     Wish Me Luck..

     Bonnie

    

Posted 3/3/2007 2:41 AM (GMT 0)
Hey Bonnie

Hang tough..u'll get thru this appt and get the answers u've been hoping for and u'll be able to breath a little easier. I'm glad u'll be seeing the specialist and just know this will be a turning point for u. Sounds like they have a working plan already and that's fantastic...they're already on top of things!! Take u'r time filling out the symptoms list...even stretch it out over a few days so u don't miss anything. It's good u'r hubby is coming too...sounds like there's a memory prob?? ;) Maybe he can help u remember or even take notes for/with u.

Don't get frustrated...know it'll all come full circle in time and u'r well on u'r way to finding things out that'll hopefully end this limbo for u. I'm not sure if they'd give u injections without a dx, but i have heard others here say they thought some docs would. Before starting them tho, be sure to check into u'r ins on that. Some companies may not allow use of the meds without an official dx. Come back and let us know how the appt goes (and that long mri in the morn!) and how u'r feeling. And, u'r right....we'll be right here with u all the way..so lean on us all u want. Ur journey is valuable to u and everyone here...and u'r valuable to all of us.
Posted 3/3/2007 2:44 AM (GMT 0)
Wow what a long road. I don't know what to say except good luck. If MS is you dx then at least you finally have an answer and you can move on. Stay positive no matter the dx. That is so very important as I'm sure you've heard several times. We will all be here to support you no matter what new chapter in life you are starting.
Posted 3/3/2007 11:20 AM (GMT 0)
Luck, indeed. I hope the visit goes well for you, and you get some answers.
Posted 3/4/2007 2:00 AM (GMT 0)
Hang in there Bonnie!  Tuesday will be here before you know it and I wish you all my best :-)

 

Kimber

Posted 3/7/2007 12:16 AM (GMT 0)
Hello to all.

Well, I went to my appt. Had the longest MRI I'v ever had. All this time and assumed it would be the same this time. But it wasn't. They found lesions. In Brain and Spine....... He is going to call me tomorrow. He mention some sort of Copaxine study going on, and wanted to know if I would be interested. I was listening very carefully, and they he said lesions, and i was unable to focus on the rest of the conversation. But there are 5 different senerios that someone has to fall into to be diagnosed with MS, and I know fit into one of those. He has yet to diagnose me, well he can't, but the team can, and he will meat with them tomorrow and call me with the "verdict". Hubby was with me, and he said he understood everything, so I asked him to explain a little more tonight after the kids go to bed. I will keep you informed, and as soon as he lets me know what is going to happen.

Agian thank you all for being there, and he agree'd on the "fake Flare" and said don't do it agian...lol

Hugs,
Bonnie
Posted 3/7/2007 1:12 AM (GMT 0)
Hey Bonnie

Wow...big step forward! Seems as tho this appt was well worth it and i'm glad u went! I know u'r in shock now...i'm sure it's quite scary to actually hear the words. Good that u'r husband was with u and able to help u remember all he said. Please do let us know how u'r doing and how the next appt goes. That Copaxone study may be a great thing in helping on the cost of u'r meds! Take good care!
Posted 3/7/2007 1:34 AM (GMT 0)
Hi Bonnie,

 

    Sounds like you're gonna get some answers!  Take good care of yourself, no more fake flares :-) Give yourself some time to get all you learned today to sink in, and we'll here for you if you need us.  Please let us know when you find out more. 

 

 

Kimber

Posted 3/8/2007 4:04 AM (GMT 0)
Hello to all...........


I am no longer in Limbo Land..... Today I got the official word I have MS. I start my trial screening on Monday. Very Bitter/Sweet news. Did know how i would react.....

I guess im just glad to have found out, and can now move on to the next step. they say If all goes well I should be on Copaxone by the end of this month or first week in April. So im not going anywhere. I will need you guys more than ever now. TY for keeping me sane through my limbo land.

Hugs,
Bonnie
Posted 3/8/2007 4:10 AM (GMT 0)
Hey Bonnie

Oh my goodness...i'm so sorry, but in a sad way very glad u'r out of limbo and can move forward with treatment. We will most definitely be here for u friend. Take good care and take time to let this sink in. It's quite a hunk of news to accept and u'll need to give u'rself time for that. Take such good care and let us know how it goes getting on the Copaxone.
Posted 3/8/2007 4:14 AM (GMT 0)

Oh Bonnie,

I am so sorry. Bitter - sweet is right.  Hang in there.  I love reading your posts.  You have an interesting life.  Keep posting - I really like the descriptions of your job.  By the by I know a firefighter with MS and he is also on copaxone.  He is doing well - he still works with enthusiasm.  Good luck! 

Posted 3/8/2007 1:25 PM (GMT 0)
Hi Bonnie -

Sorry to hear about the news, but glad someone else is out of limboland. Definately keep us posted about how your job and this disease works together. I, like Gretchen, love to hear about your job too, it sounds much more exciting than mine!

I'm hearing so much good from people on the copaxone, hopefully it will help you as well. I do have a question though, why does it take so long to get on the copaxone? Here's a newbie question... Can't you just go to the pharmacy and pick it up like normal scripts? I know a home nurse has to come over and show you stuff, but 3 weeks seems awfully long. If anyone can answer those questions, that would be great. I'm just curious.

Take care and definately keep in touch.
Posted 3/8/2007 4:16 PM (GMT 0)
Denda,

I'm not sure how it would work for a regular prescript, but I and trying a clinical trial of Copaxone. Before you can start and meds on a study or trial you need to be medically screened with baselines. This is so when you start the drugs they can tell what type of effects it has in your body. I basically have to do it their way. I don't mind. Thank you all for being there. Denda and Gretchen, you both made me laugh when you said you enjoyed reading my discription of the training i am going throu. This is because the whole time I typed it, i kept saying to myself, this will be so boring for them to read. I hope someone is able to answer your questions better than I can.

Hugs
Bonnie
Posted 3/8/2007 4:51 PM (GMT 0)
Hi Bonnie,

I'm so sorry u got that bad news but as everyone has said at least ur out of limbo. I too enjoy hearing about ur job. Please know that we are here for u anytime u need us.

Bye!!!

Sheila :-)
Posted 3/8/2007 6:23 PM (GMT 0)
I'm so sorry. It's always a shock to hear that kind of news, even when it might be expected. Good luck with the trials. I would be interested to hear how that goes.
Posted 3/8/2007 6:37 PM (GMT 0)
Thanks for the explaination Bonnie!

I didn't know if this was common practice when someone is dx'd or what. If you are on the trial study, then I definately understand. Thanks again.
Posted 3/8/2007 11:53 PM (GMT 0)
Wow....out of Limboland......I hope that the Copaxone works well for you!!!

Thinking of you.

KAS!
Posted 3/9/2007 1:17 AM (GMT 0)
Hi Bonnie,

 

    Please know we are all here for you.  I am sorry about the official dx but at least now you know for sure.  Good luck with the trial and I hope Copaxone works good for you.  By the way, your job is far from boring, I enjoy reading about what you do also :-)

 

Kimber

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