Hello
 

Hello

I have had a thoracic spine MRI, a cervical spine MRI and a brain MRI. On March 19th my neurologist called me and said that from looking at my brain MRI, she said that I had multiple sclerosis. She has ordered a spinal tap for me before putting me on Rebif.

I feel so overwhelmed. I just don't know. I guess I am in denial. I have only told a few people and am afraid to tell others until after my spinal tap. I am constantly reading about Multiple Sclerosis on the internet and have been reading the materials she gave me.

When you have a brain MRI and it comes back that you have Multiple Sclerosis does that mean the spinal tap will come back the same? I have 5 children, four sons, 16, 14, 12 1/2 and 8 1/2 and one daughter 5. I work full-time and have a disabled husband. He has limb girdle muscular dystrophy.

As my neurologist told me, it is treatable but not curable.

Welcome Roz, so nice to have you here. I am so sorry for your recent DX of MS, but so glad you found us.

After you have been DX, I see no need for an LP, unless your Doc wants to rule out something else. The LP findings that point to MS ar Banding and protien in the spinal fluid + other things, of which,I'm not familiar.

So sorry about you DH's disability, as well. The two of you have quite a challenge in front of you. If we can be of any help and comfort, do not hesitate to let us know.

In the meantime, please join in anywhere here and enjoy being a part of our Family.

:hug:

Hi everyone,

I am seeing lots of familar names on this site that were currently or still are on another site I frequent.

Dx in 2004 with MS by way of ON
I am happy to join in the conversations you all have going on here.

My user name on the other MS site is Terry.:grouphug:

Hi Terry! :Wave-Hello: Welcome to NeuroTalk!

Welcome Terry...I love your user name...LOL...says it all. All it needs is one of these beside it..:rolleyes: or this..:p

Hope you like it here..:)

I am not totally new here (lurker) but I did want to re-introduce myself since there are so many more new people here since my last visit and I dont post much.

Sweetyhide from NC
dx in 2004
Tovaxin trial participant

love cats (can you tell?) and the web
Married 22 years this year and I have 2 sons.
One 18 and one 21.
My 21 year old is in Iraq fighting with the Navy and we expect his deployment to end this month. (thank God)

Hi Sweety! :hug:

What are you trying to appear all mature and wise, throwing around all those big numbers; married 22 yrs, kids that old? :p;)

Tell them the truth . . . you married at age 12. :winky:

Cherie

Hi SweetyH :Wave-Hello:

So glad you are no longer just a lurker. We rarely bite. :eek: (if so, there is usually chocolate involved) :D

And will listen to all your stories, rants, observations etc. Please find a comfy spot and speak up.

:hug:

Me mature? Ha!
It's not in the numbers, it's in the mind.
Since my mind is half gone I cant very well speculate on my mind age. :D


thanks for the re-welcome MSacorn!

Hi Everyone!
 

Hi~ I'm Sue and I'm starting on Ty this next week and a tad nervous about it. I thought this might be a great place to meet new friends with MS. I was just told by my new Neuro who is a MS Specialist with FloridaMS.org that I am Progressive Relapsing. My old Neuro said I was Secondary Progressive so who know's????? :confused: I did some research and I guess that I do fit the PRMS profile more.

Anyway, hi to everyone and all the other Newbys like me!
Sue

Hi Suz and Welcome. Nice to meet you..:)

We have a Tysabri *sticky* thread that I'm sure you will want to read and post in.

:hug:

:Wave-Hello: Hi Sueezz

Welcome to the group. Glad your here. Sorry about the ms.

So tell us about yourself when your comfy. We are a bit quieter on the weekends, but come Monday the place will be a buzz with activity.

:hug:

I came from MS world message boards-I see Snoopy from there.

Live in Moyock NC. The very NE tip of the state on the sound facing the outer banks. Beautiful!

Dx with ms in 4/7 after a yr of neurro saying I was just stressed. I went from all neg tests to over 10 brain lesions in 9 months.

Did Cop for 8 months but was nauseas, vertigo, diarrhea, ovarian cysts, flank pain etc. Lost 30 lbs. Now waiting for trip to Hopkins to see what'snext. Prob Ty but I'm a little intimated by it.

3 kids, 3 dogs a husband and a house that is too big for me to take care of. Currently having relapse and feel like ****, but, still smiling and going forward.

I'm rambling....sorry Carrie

Hiya and welcome. There are actually quite a lot of us here from MSW. Keep posting and I'm sure you will see lots of familiar names.

Welcome, Carrie..:) I'm glad you found us.

Sorry about your flare..:( I hope it goes away soon.

Come on in and enjoy your new home.:hug:

I just came over from MSW, though I have been a member here for a long time. I see a lot of MSW people here, hi Holly.:)

Just for the record!
 

I have been posting a few days, asking lots of questions, and already tried to kill a member :eek: (Sorry, again, B2Y)

So, this is me in a nutshell.

My name is Connie. I am a 32 yo wife, mom to a 10 year old, 4 dogs, 4 cats, 3 ferrets, and a snake, nurse who works in drug addiction (and in a nursing home on the side). I am currently taking online classes to advance my nursing degree and also pick up 3 AA degrees in business, human services, and human resources. I am also working on 1 book full time (about the RNY weight loss surgery that I had) and will begin another one very soon (on addiction). My DH and I are in the midst of adopting our 10 year old daughter. We have had her for a year. I am planning on going home to visit (in PA) soon, and taking a cruise in November. All this is why I am p!$$ed that I was diagnosed NOW of all times!

I had Gastric Bypass in October of '06. Have lost almost 150 pounds and am almost at goal. The best thing I have ever done for myself, especially in light of the situation I find myself in.

I was diagnosed April 3rd, but have known of the possibility since 2000. In 4/2000 I was hospitalized with TIA like symptoms. When they ruled out TIAs, they wanted me to follow up to diagnose MS. I said, NO!! I didn't want the label then (and don't really want it now :rolleyes: ) So, I guess I have spent 8years in semi-denial, knowing the possibility, but blaming everything on being lazy, stressed overly tired, so on and so forth! I do feel vindicated in a way knowing that I am really NOT as lazy as I thought I was.

I am a very positive person, and will not allow this to get "me" down. I don't have room in my life to be "down." I am sure I will go through all the things everyone else goes through, and I know I will have my pity me moments. Right now I find I am in denial, and it is warm and cozy and allows me to continue about my business.

I am not sure the course of action I am going to take. To DMD or not to DMD is the biggest question right now. I keep saying let me get through the next 9 months and I will re-evaluate my life.

I guess I am pretty lucky, 2 flares in 8 years, and 4 lesions (all brain). The biggest day to day symptom is fatigue. I am doing more to manage that.

My last flare was in February, following a bout with the flu. I had a temp of 103, and 2 days later was almost paralyzed on my left side.

I have an LP on the 21rst, and will follow up with a second opinion in May with an MS specialist, whom I am traveling 2.5 hours to see.

Welp, that is my life. Boring, I know. Sounds like just about any other life at this stage in the game. I look forward to being active on the boards, and getting to know many people.

:Wave-Hello: Hello, Carrie and :welcome_sign: to NeuroTalk. I now "see" you.:)

As Holly mentioned you will see a lot of familiar names ;)

:Wave-Hello:Hello, Bill glad to see you found your way back here.

Glad to see you found us. There are a lot of former MSW members here. Jump right in.

Hi Carrie-
Nice to see you here - sorry you have a relapse going on. Mike was talking about another get together, but things have been busy here getting the house put together for sale. Hope to see you again soon!

Hi Bill!
Nice to see you here too!
Greta

newbie here
 

Hi everyone, I'm Carisa. I was just officially diagnosed last week, but have been trying to figure it all out for the last 5 months. It started with weakness and tingling in my hands, and I finally had an MRI and spinal tap in early April. They're telling me that I have about 30 lesions in my brain but none in my spinal cord and no "bands" in my spinal fluid. Because I've had two "CIS" episodes, they've given me a diagnosis of RRMS. Now my neuro is wanting me to get on the disease modifying drugs, but hasn't provided much guidance as far as the differences between the drugs. Basically, he handed me armloads of drug company generated binders and told me to do my own research. (I know - I'm currently looking for a new neuro.) So, after doing all my own research, I'm finding myself waffling between Avonex and Copaxone. But, I can't seem to tell if there is a big difference between the effectiveness of the two drugs... it seems to me that if they're both just as effective (around 30%), I'd rather take the one that doesn't make me sick. Does anyone have any insight for me? Thank you!!!!
p.s. I'm so glad to have found a place to talk to others with MS!:grouphug:

Carisa,

I have only used two MS medications: Avonex and Tysabri.

I used Avonex for over 6 years and was not sure if was working until I realized two things: (1) I had only two minor exacerbations in 6 years, and: 2) when I stopped for 5 weeks to switch to Tysabri, the syptoms from years ago all showed-up at once (i.e. Avonex must have been working).

Welcome to the site. I hope that we can help you through this process, s feel free to ask anything.

-Vic

:D Hello everyone. I'm a newbie here and trying to become acquainted with the site. I was diagnosed with RRMS almost 14 years ago. I'm also letting the Swank MS diet into my life. :eek: It's good to be here.

Hello Carisa and welcome to NeuroTalk :)

It's really not unusual to be given information about the disease modifying drugs (DMDs) and you, the patient, making the choice of which one to use. Some neuros will have a preference but in the end it's still your choice. I know it sounds strange but that's just how it works ;)

Hello, Amy and welcome to NeuroTalk :)

You will find several of us who have had this disease a long time and there are members who use the Swank diet.

Hi Carisa
Welcome to NT. Sorry about your dx, but you're in a good place now. I've tried Avx and copax. The A lasted 6 months, and I had a fever for 4 of the 7 days between injesctions. Needless to say, I stopped.

I was on C for a couple years, no s/e other then injection site stuff and necrosis of the backs of my arms, hips and legs. I was taking Imuran also. So my doc took me off the C and kept me on I. Several years later I'm still on Imuran and just started Namenda (anti-alzheimer med) last week.


Looking forward to more posts and getting to know you.

:hug:

Hi Amy
Welcome to the club. I'd be interested in your take on the Swank diet. I recently started reading The MS Recovery Diet which has some basis in the SD, and other stuff.

See you on the boards.

:hug:

Welcome to Neurotalk, Carissa and Amy. So nice to meet you both. Come on in and join your new Family. :)

Thanks!
 

I appreciate the warm welcome from all of you. I can see that there is a wealth of information to pick up from those who have much more experience with MS than myself. Now you've got me interested in the diets... :winky:

Hi there Carisa! Another with RRMS here, and I wanted to welcome you to NeuroTalk.

Have a look around the forum, and don't neglect "The Stumble Inn" where we get together for some fun and relaxation. I'm sure it won't be long before you feel like a member of our "family".

I also wanted to mention to you about not getting too scared about the number of lesions on your MRI. I'm hoping that your neuro has told you that numbers of lesions has nothing to do with severity of the disease.

Anyway, welcome again Carisa. It's lovely to meet you.

Hi, I am Quix. I am a senior member of another forum like this on MedHelp. Until 2001 I was a pediatrician, then was floored and disabled by Autoimmune Inner Ear Disease (documented to be peripheral, so not MS). In late 2004 suddenly couldn't lift my right leg and that was the beginning of MS for me at age 52. My original Neuro, tho esteemed, was rude and dismissive of my symptoms (altho he diagnosed RLE weakness and spasticity - who can fake spasticity?) misread my brain MRI as normal and didn't want to do a LP which would "undoubtedly be 'unrevealing'". I found another, because by this time I had R hemiparesis, incontinence, and L atypical Trigeminal Neuralgia (constant boring pain rather than lightening jabs of pain). I am on Avonex and hanging in there. The fatigue and the original vertigo are the worst part, keep me pretty homebound.

Currently on the upside of a new short mini-exasperation.

Just wanted to say "Hi." I was notified that Snoopy posted a quote from one of the articles that I wrote for my forum. I try to put hard topics into langauge clear to people without a hard science background.

Hope I posted in the right place.

Quix

Hello, Quixotic and welcome to NeuroTalk. :)

Apparently word gets around MS forums quite quickly:rolleyes: :ROTFLMAO:

:welcome_sign: Quix

Any friend of Snoopy's is a friend of mine. Sounds like you've got quite a story. Sorry you've had to go through so much.

Look forward to seeing you on the boards.

:hug:

Hi I'm a Newby!
 

Hello all! My name is Crystal and I have been dx'd since Feb 2005 after going numb and having a bout with optic neuritis. I started on Tysabri in June 2007after all of my MRI's looked horrible. I was doing great on Tysabri until Feb 2008 when I started going down-hill. I have had extreme pain in my legs, spasticity, losing my memory, depression, insomnia....I'm sure the list could go on.

I thought Ty was my miracle drug, I know alot of people feel this way.

Am I the only one who has had a relapse while on it? Is there anyone else out there? :(

I'm excited about finding this board, you seem like a great group!

Welcome CB, I'm so glad you found us..:)

Come on in and join the club.

Be sure to check out the Tysabri Sticky thread at the top of the list. Someone will answer your question..:)

Welcome from me as well Crystal. I see that you've already found the Tysabri thread, so hopefully you'll get the answers you're looking for.

Welcome again.

Hi Everyone,

I am new to the forum and just posted tonight for the first time. Here is a quick run down on me:


- diagnosed with MS, a couple of years ago, about 6 months after the sudden onset of neurological symptoms

- started Copaxone after positive LP and brain MRI

- undiagnosed about a year later and stopped DMD therapy (complicated)

- have had several bouts of ON and persistent double vision

- developed brain stem lesions that have been quite a problem

- married and a mother to two wonderful boys (young men really)

- still working but with severe fatigue (I need the fabulous benefits)

- have a great medical team that follow me very closely and do all that they
can to manage my symptoms and find my diagnosis (MS is still not ruled out)

- lucky to have incredible friends and co-workers

- happy to be doing as well as I am and hoping to be healthy one day


Thanks for the welcome and I am looking forward to getting to know all of you. I see that I have much reading to do here on the introduction thread!

Pacifica

:Wave-Hello: Hello Pacifica and :welcome_sign: to NeuroTalk.


I know I welcomed you on another thread but thought I would do it again since you were kind enough to post some information about yourself ;)

Welcome Pacifica
It's sounds like you've gone through and continue to deal with alot. Glad you found us. Looking forward to seeing you on the board.

:hug:

Dear LeeAnn and Beth,

Thanks for taking the time to welcome me. I just returned home from work and saw your posts. Yes, the last few years have been quite a ride. Not sure I would recommend this particular ride to anyone but I know many on the board have gone through much of the same.

On the other hand, it could have been much worse so I try to remain positive and thankful. I have taken my focus off of getting a "diagnosis" and instead focus on my well-being.

Now, I am going to watch my favorite hockey team in the NHL Playoffs. I love to watch hockey with my sons. We even went to a playoff game live last week. What a great time that was.

Bye!