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09-26-2006, 04:30 PM | #1 | |||
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In Remembrance
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Welcome to the New BT1 MS Forum.
Come in and introduce yourselves. I'd love to meet you. Do you have MS, are you in the DX process or do you have a loved one with MS? Dis is Da Place..
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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09-26-2006, 06:17 PM | #2 | ||
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Junior Member
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Hi Sally, I used to be a member on OBT (I was Teddy1) and your nice welcoming message encouraged me to stop lurking here and come out into the open!
A little about me - I am now in the Land of Confusion. I was diagnosed with PPMS in October last year despite only one brain lesion and one "suspicious patch on my cervical spine" on MRI and a negative LP, and had the diagnosis rescinded earlier this year. Apparently I am now suffering from "a neurological condition of unknown etiology". Fancy talk for "we don't know what's wrong with you". I need a wheelchair or a scooter to go any distance and as of Thursday last week, am struggling to even heave myself around the house which is very scary for me. Not so much fun and I have an appointment this afternoon with the Dreaded Neurologist who will, I'm sure, shake his head and tell me yet again I'm a mystery. But - I have a lovely husband and a gorgeous seven year old daughter who keep me cheery and do so much for me around the house. Thanks for encouraging me to come out and play! Teddy
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I want answers now, or I want them eventually! Homer J. Simpson |
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09-26-2006, 07:49 PM | #3 | ||
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Junior Member
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Thanks for this much needed thread, as BT2 is still in it's infancy.
I was an active member of BT1. I have had ms for 16 years, and until I found brain talk, I had never reached out to the ms community for support and info. Boy was I missing out! I am a happily married mother of 2. I struggle with mobility issues that vary widely from one day to the next. The summer heat is my sworn enemy. The level of compassion and depth of information that I have received from BT members has been invaluable. I am so happy this community is up and running again with so many "familiar faces" Welcome home, everyone! MSM
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" Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, chocolate in one hand, wine in the other, body thoroughly used up, totally worn out and screaming "WOO HOO what a ride!" |
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09-26-2006, 10:40 PM | #4 | |||
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In Remembrance
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Hi Teddy, nice to meet you. Isn't Limboland the pits? Especially since you are having so many of the rancid sx. Darn Neuros...how can he/she be sure you don't have MS? Are you seeing an MS Specialist? Are you on any of the MS Meds?
I'm so happy to hear that you have good family support. That makes the battle so much easier, if you have a loving cheering section. I'm so glad you came out of lurkdom. You and I need all the support we can get. Hugs,
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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09-26-2006, 10:59 PM | #5 | |||
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In Remembrance
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Quote:
The 5 youngest are my Daughters Children, and I get to see them all, often. They make my day. Summer Heat and MS do not go well together. I used to love summer, now I dread it. There's nothing worse than a heat flare. It just saps all the energy right out of you. Bah! So glad you are here and I'm so glad DocJohn gave us this nice home. Talk to you soon.
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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09-26-2006, 11:10 PM | #6 | |||
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Member
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Hi all! I asked in another thread if it would be ok for me to join you here, even though I "only" have myelopathy and not MS (along with CMP and a few other problems.) I'll try not to be a nuisance I am a member of the NMSS and also support the local MSS and attend support meetings. TC JD
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Your conscious mind may not be able to understand what I'm telling you, but I trust your unconscious mind to use that part that is most relevant.
Last edited by JD; 09-27-2006 at 01:44 AM. |
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09-26-2006, 11:27 PM | #7 | |||
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In Remembrance
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Welcome JD, nice to have you aboard.
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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09-28-2006, 05:58 PM | #8 | |||
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Member
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Quote:
I've been diagnosed for over 10 years and was in the original Tysabri Trials also known then as Antegren. I was on both Avonex, and Tysabri during the trials and am still here to talk about it. I'm slated to go back on Tysabri towards the end of Oct., as soon as the infusion center gets certified by the TOUCH program. We are hoping to have children in the future, but right now both my husband and I are very wrapped up in our careers. I hope you are doing better. Have you had your appointment with your physician yet? I look forward to getting to know many others on here as well, but because of my schedule, my appearances here are spotty. Chris |
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09-28-2006, 06:02 PM | #9 | |||
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Member
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I also forgot to mention that I am originally from the UK. I've been in the US now for 11 years, and this is where I met my husband. Are there any other Brits out there????
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09-28-2006, 06:32 PM | #10 | |||
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In Remembrance
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I will still probably have to change ADs, but am terrified of weaning off of Paxil. I have read so many horror stories. I may ask my Doc if I can increase doseage, instead of changing. Paxil has been wonderful for me. But I am on the highest recommended dose now..so..?? Good thoughts, Chris.
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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