Welcome New Members
 

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..:D

Coming out from behind the bushes!
 

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only one brain lesion and one "suspicious patch on my cervical spine" on MRI and a negative LP, and had the diagnosis rescinded earlier this year.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

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.:mad:

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

Hi Teddy, nice to meet you. Isn't Limboland the pits? Especially since you are having so many of the rancid sx.:mad: 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.:D

I'm so glad you came out of lurkdom. You and I need all the support we can get.

Hugs,

Welcome home to you too, MSMommy. How old are you Kiddles? I have GrandKids all sizes and ages.:D The youngest is a boy - 8mos and the oldest is a Girl/Woman 20yrs. The oldest is a Step Grand, as are 4 others. I rarely see them, since their Mom Passed away, but they are wonderful.

The 5 youngest are my Daughters Children, and I get to see them all, often. They make my day.:D

Summer Heat and MS do not go well together. I used to love summer, now I dread it.:mad: 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.

Welcome JD, nice to have you aboard.:)

Welcome, hopefully you will be able to gain some knowlage that you will finn helpful. :)

Thanks Sally!

I'm not on any meds at all. Neuro says no because he doesn't know what he's treating. I'm really not sure how they now know I don't have MS, since neuro no. 1 was convinced enough to tell me I had PPMS without meeting the criteria!

Seeing another neuro now, hopefully he'll get to the bottom of things eventually but it's SO frustrating, as I'm sure many can understand! Particularly as I'd just managed to eventually get my head around the PPMS diagnosis and was trying to come to terms with that.

Ah well, nice to meet you all, look forward to talking soon!

Hi All. :)

What a good thread Sally! It's a nice way to meet everyone.

I was also a member of the old BT...AKA jeny218. Although I didn't post there for a quite a while before it crashed.

I've been in the diagnosis phase for three years now. I showed my first lesions in May that the doc is keeping an eye on. I also had my first known 'flare' just a couple weeks ago (still recovering). As far as diagnosis goes, I've been told that it's most likely early MS but need to wait for the lesions to change to be clinically doagnosed. :mad: I say early treatment!!

Anyhoo, I'm married to my best friend and have four babies...6,8,10, and 12. I probably don't even have to say it, but I'm a stay at home mom. And I love it!

It's so nice to meet you all!

Teddy, I hope you get answers soon. I know all to well how frustrating this can be.

Well I've been posting on BT2 for awhile but never formally introduced myself. How rude!!!!!! I'm 56, been dx since '97, had to quit work in '99. got SSD in '01. Being on SSD allows your body to heal some. I was a member of the old, old briantalk back in 97. I have been married to the same man for 32 years now, have two daughters, ages 25 and 29. The oldest has one daughter, age 5 and another due in November. It hasn't been an easy pregnancy at all and we will all breathe a sigh of relief if she lasts till 40 weeks and everything is fine. I get my grandaughter for as long as I can take it in October during her fall break!!!!!!!!! My other daughter got married last June, was one of the many new marriages here before their spouses were deployed. Her husband comes home sometime late next month or early November. It has been my prayer that he comes home before my other grandchild gets here!!!! This daughter just bought their first house. It was kind of difficult buying a house with him in Iraq but they had a wonderful agent and we thank God for the internet. I have a wonderful little kitten. I guess that's all for now.

Sally, I forgot to say I LOVE your puppy avatar. So cute! And you're right, it is wonderful to have my Teddy Support Squad. My cheersquad also includes a giant kitty cat, a giant rottweiler cross golden retriever, and a golden retriever (who is large but not giant :D ).

I'm really so glad I "came out" - this seems like a great forum with so many nice people.

Daphne, I hope you get answers soon too! You're right, the whole diagnosis process can be very nearly soul-destroying.

I also wholeheartedly agree re early treatment. When I was diagnosed with the PPMS, I was kind of shattered when the neuro told me they wouldn't give me CRABs or anything because in his experience it made things worse with PPMS. Not that one desperately wanted to inject oneself regularly, of course, but to me it was better than being told "go home, don't get stressed, don't get hot, don't get tired, don't get infections and enjoy your life". Which is verbatim what this neuro said. He clearly failed Bedside Manners 101 while studying. Not to mention Real Life 101!!

I love your Signature line, Teddy.:D

Oh goody, you're an animal lover too. Yep, that's my little Shih Tzu. He thinks he's a Rottweiler..LOL

Hi everyone

I posted a few days ago and introduced myself, but I thought I would hop on here since it is a great thread and a great way to get to know each other.

I was dx'd RRMS five years ago - a couple of months after the death of my Mum - which was a time of incredible stress. I probably lost fifty percent of my vision, a lot of my bladder control, most of my balance and I was tingling, buzzing, 'shocking' and falling about most of the time.

I was lucky in one way - no problems getting dx'd - my MRI looked like I had left my brain out in a snowstorm, so it only took one consultation and one MRI to confirm.

Started Beta a few weeks later, and amazingly, I have had no further disease progression since then. I still have residual cr*p going on - like double/blurred vision, fatigue, poor balance, brain fog and so on.

In a way, MS was like divine intervention for me - a routine MRI found an unruptured brain aneurysm so I was able to get that clipped before it blew. Open brain surgery is no picnic, but it's better than the alternative (if it had ruptured I would most likely have died or been a vegetable).

I am 37 and have two kids (10 and 13) and a gorgeous husband who worships me. So apart from a few health hurdles life is pretty darn good.

Anyhow, nice to meet you all

Lyn :)

Ahhh...animal lovers! :D

Lets's see here...3 yr oldsaint bernard, 1 yr old basset hound, 3 kitties, and a cockatiel. My kids altogether have 3 rats and 2 parakeets. :p

Yeppers, ANimal lover too!

Sally, I thought my signature line was pretty funny too, especially given my circumstances! I am definitely an animal lover. Our animals are a part of the family. My sisters have shih tzus and they're pretty tough too... :D

Our cat rules our animal family. My poor dogs are scared stiff of him. They won't walk within a three feet radius of him, they won't even look at him. I think kitty thinks he's the rottweiler of the family! It's pretty funny, the cat purposely sits in the dogs' way and they'll hang their heads, avert their eyes and kind of shuffle around, tails between legs, trying to work out how to get around That Evil Cat.

Daphne, you win the giant-est dog contest and the largest assortment of animals contest! A St Bernard would dwarf even my two. They're lovely dogs.

Hi Lyn - I'm an Aussie too, sunny Queensland! Nice to meet you!

Our family have always been animal lovers. When my girls were at home we had, sugar gliders, orphaned wild bunnies and robins, we had a sheltie for about 12 years before we had to put him down and now i have a wonderful domestic short hair kitten. My girls have dogs and snakes now!!!!!

Dogs and Snakes??? Do they play well together..LOL?

What a lovely post, Sally. My name is Chris. I am married to a wonderful man for the past 9 years, and so far we are childless except for our chocolate lab, Dylan. I am a Certified Nurse Midwife in a very busy practice, and sometimes wonder what I am doing still working full time, although I do adore being a CNM.

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

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????

I'm doing a bit better, Chris, thank you for asking. This place and all of you have helped a lot, in getting me out of my funk.:)

I will still probably have to change ADs, but am terrified of weaning off of Paxil. I have read so many horror stories.:eek: 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.:)

Mu daughter did have dog, snakes and a bird. But sadly the dog ate the bird. This 8 foot boa is not going to let the boxer bother him. Maybe the other way around. No, the snake is in it's own large locked cage.

Ewwww! Usually it's the cat that eats the bird but I guess her dog was hungry. With a snake, I guess it's a good thing she doesn't have a pet mouse.:D

Nature of the beast. My Dauchound dug a baby squirrel out of the nest. I was so mad at him, but it's his nature.:eek:

Hi everyone. This is a nice place. My name is Michelle and I was diagnosed with MS last November around Thanksgiving. I have RRMS. I found this website through MSWorld. So it is nice to meet all of you.

Hi Michelle, so nice to meet you. Welcome to BT2.:)

So, you are about to celebrate (NOT) your 1st anniversary of your MS DX. How are you doing after a year and are you on any MS Med.?

Hugs,

Hi I am Lesley, not diagnosised with anything- but having lots of wierd sensory things.

I used to lurk at the original brain talk, missed you all heaps! It is reassuring to know there are other people out there experiencing similar things, who are not diagnosed either.

Cheers
Lesley

Hi Leslie, Welcome home.:)

Are you seeing a MS specialist? Have you had all the tests..MRI, LP, EVPs? Limboland is frustrating.

Let us know how you are doing, from time to time.

Hugs,

I am on Betaseron. I guess I am doing ok.( I wish). Lately my memory has gotten really bad. Keep forgetting things or I do things and forget to finish them. Like leaving the shed keys in the shed door. Leaving the sidedoor unlocked during the night. Those kind of things. My arms, hands, legs and feet keeping going numb and hurt like heck. My dizziness kicked last night. I took a Meclizine for it, but that stuff knocks me out for a loop. Still felt spacey when I woke up this morning. Other than that I guess I am doing ok.
Great to meet you all.

Hi SallyC. Nice to see you over here.

Teddy, I'm sort of in Limboland myself, again. My diagnosis has been reclassified as probably though they still have me on Betaseron for now. Limboland isn't as bad this time as it was the first time, because I am nearly symptoms free. But, when I was having all the problems with leg weakness and I didn;t know if I was getting better, limboland was a horrifying place...truly it's taken me years to get over that period of my life.

Matt, you're reclassified to probable?!? I remember your posts from BT1. Undiagnosis (bad English, I know) seems to be happening a lot lately. It was a really bizarre couple of months for me when I was undiagnosed. It is very scary to have mobility problems which impinge so severely on one's quality of life, not have any answers to what's going on, and no treatment on offer at all. Strangely, after the initial shock of the PPMS diagnosis, I kind of coped with everything better because at least I knew what I was dealing with.

I'm so glad you've got your symptoms pretty much under control, and that they haven't stopped your Betaseron. It must be doing something for you? Would that I could at least try it!!

My neurologist has agreed to give me anti-fatigue medications but in his words, "I can't give you disease-modifying drugs because I don't know what disease I'm modifying".

All well and good for him to say, and intellectually I really do understand his logic, but he's not the one getting more and more immobile. :mad:

Well, enough of my ranting - it's good to see you here!

Thanks Teddy. I wish they would try you on something...like at least solumedrol. I can see why they would be more hesitant with the chemotherapeutic drugs if you don't have a definite diagnosis, and there isn't much evidence for Betaseron working on PPMS, or anything for that matter. I don't know why they can't at least try something like Betaseron...as you say, it's obviously not them who can barely walk because of this damn disease...otherwise they'd be into trying everything.

Best wishes,
Matt

Hi Friends,

I was a member of BT1 for a few years, it was my home away from home
so to speak.

I was DXed 12-2000 with RRMS, had symptoms since 1994, it was a long
journey to being DXed. I'm 49, soon to be 50 :eek:

I started on Copaxone but got skin Necrosis, then Avonex but lots of spinal lesions, so now Rebif for 5 months

I worked in Engineering as a Prototype Assembler Specialist before going on SSDI in 2003. I miss working, but I love being able to rest when I need to now.

I would sleep my life away nights and weekends, just to do it all over the following week.

After 27 years of working ( sometimes 2 jobs ), I gave in to
the fact I couldn't do it anymore and with the support of my Neuro and
family......quit.

I have been married to my Hubby / 2nd marraige for 12 years, (together a total of 20 ).

I have a 31 yr old son who "DOESN'T" live at home...LOL.
( Yes, I was a child bride ;) )

My Mom (72) lives with us, she has a in-law apartment over our garage. I'm relieved she's near us now. She owned a home in a very bad part of a city in Mass., the crime rate was horrible and I worried about her everyday. Much less stress for us now!

I get pretty bored sometimes, as I don't drive anymore, so I started:
QUILTING! :D


Nice to see the "Oldies" and welcome the "Newbies"

MUPPY ( Cheryl )

Just Bumping This Up For Others

Welcome Home, Muppy...So glad that you found us.:)

Hi I am Soulflower and I was diagnosed with RRMS in June of this year. I also have 2 cousins with MS but they both live out of state.

My hobbies are crocheting, writing poetry, embroidery, and I am currently about to begin a sewing class in my complex to learn quilting:D :D :D .

I have no children and am on SSD and Retired. Lucky me, I retired at 38 on disability after 20 years of service.

I also like helping others in anyway that I can. I am excited to be starting a local MS support group chapter for my city in my complex beginning in January.

My journey has been rough, but keeping active and finding support is what has kept me in good spirits and feeling better each day.

Thank you for having me as a part of this wonderful forum.

Hi Soulflower,

Glad you joined us!

Welcome, Soulflower.:) So nice to meet you. I'm glad you have hobbies to keep you happy.

I used to do all that stuff, but I retired from just about everything.:D My fun, now, and what keeps me sane, are my Kids and GKids and my lovely laptop PC. Oh and of course my sweet wittle doggy Pal. (my avatar)

Glad to have you here.:D

Hi Soulflower. :)

Sorry to hear about the recent dx, but I think you've found a great support network with this motley crew. :D

Welcome to the gang, and the forum.

(And don't listen to anything they tell you about me . . . it's all lies!)

Cherie

HEY! *Motley Crew* ??!!

I resemble that comment !:p

Soulflower, boy could we tell you stories....all true:D

I knew that would get you going, Snoopy! :D