Newly sick, newly dx
 

Hi,

I'm new here - both to MS, being sick, and to these boards.

I was dx with MS on January 4th. I went to a neurologist b/c I thought I had a pinched nerve in my face/jaw area, as the right side of my face had become numb over Xmas and my jaw started hurting - and my dental specialist ruled out that it wasn't anything related to my TMJ problems. During the week between Xmas and New Years -I felt really tired - like I'd go out for an hour or two and I'd have to lay down - I just couldn't function. I felt like such a bum, a real sloth! I would ask my friends to drive, etc. A couple of times, I had felt dizzy and had some brief vision problems a few days before I saw neurologist. I seriously had NO idea that I was *very* sick. Neuro said he thought I had a stroke (shocking news since I was just a few weeks shy of my 32nd birthday!). He rushed me for MRI - I told him he needed to get back to me that day - b/c if he left for the weekend without letting me know what was happening, I'd hunt him down...

Well, I guess I put us both in a crappy position - b/c come that afternoon - which was a Friday - the neuro called and said "It wasn't a stroke" - to which I took a deep breath - and then he said "you have MS" - to which I replied "what?" - and then he proceeded to talk for 12 minutes and I was completely out of my body (I checked the timer on phone when I hung up). I think it was the longest weekend of my life. :( :confused:

Within 48 hours of the diagnosis - I could had complete double vision and couldn't stand up straight, let alone walk b/c I was so dizzy. Everything started moving so fast - nurses to my house giving me IV steroids for 6 days...then oral steroids...then immediately started Copaxone. Doctors will not put me on any of the interferons as I have a terrible history of depression....and he told me from the start that I need to be on Tysabri, but that I needed to try Copaxone first.

Backing up a bit - crazy about it all - since I know so many people have spent years trying to get a positive dx here.....for me - there was a big glaring neon sign on my MRI that says "MS - dont miss me - i'm here" - i have multiple lesions - many active at the moment - as well as many black holes and grey/white spots. Several lesions are greater than 1cm in size...and I have something called "dawson's fingers" which are a hallmark of MS. I saw the MRI on the puter screen - and I still have nightmares from it. The neurologists I have seen have said that the MS was hidden for a while but now it is coming on strong and aggressive and it isn't being shy anymore. They doubt I will go more than 3 months without an exacerbation.

As of Monday, it will be 30 days on Copaxone...and as I confirmed my delivery of the next box of the shots - I realized how badly I want on Tysabri - and is this a waste of time - b/c I know I need to be clean from Copax before starting. When I last saw neuro he said we should wait 3 months before starting Tysabri. I think that is b/c it is hard to get approved or whatever unless you fail the other meds. So I said - well what if I lied and said I had a bad reaction - and he said he couldn't lie...but he couldn't stop me. Meanwhile, two days later, i started having reactions to the darn shots.

The symptoms from the flare-up lessened quite a bit with the IV treatment - but that was 3 weeks ago - and in the last week - they have started coming back stronger - though not nearly as bad as they originally were. I have never gotten any feeling back in the right side of my face/head. Neuro said the steroids take time to work and that an exacerbation can take 2 months to go away.... I've been in this one, I guess, since Dec 22 (when the numbness started). I'm really getting scared - thinking that the effects of the steroids are gone - and i'm getting worse. Not sure if it works that way - but if it does, I feel really screwed here. (Where can I send my complaint?! LOL)

I'm sorry - I just realized how long this is - I think the shock of it all is wearing off - and I'm beginning to freak out. I had to go get a shower chair and walker this week :( I sleep a lot - though I take something for the fatigue (provigil - though it doesnt do enough even at 400mg a day). I feel like a piece of dead wood most days. I hate having these limitations - like if I do one errand a day - then I'm toast. My brain shuts down and I can't function anymore. i keep saying that if my disability was more physical I'd be okay - but it's very cognitive and brain centered right now - I can't walk not b/c my legs don't work - but b/c I'm so wobbly from being dizzy and the vertigo and not being able to see well. I will be on the phone and on hold with someone - and I'll forget who I'm on the phone with. Now, if I were 60, I'd say, okay...but I'm 32...not so normal!

I guess the point of this is - why am I waiting to start Tysabri? I'm so NOT afraid of the risks - and I know it isn't a miracle cure - but the docs gave me such a bleak prognosis - I want to start this now and get going. I know copaxone is probably not strong enough for what I need - and I can't risk the interferon treatments. Should I start pushing my neuro to get me on Tysabri now and not wait the three months?

I'm feeling like a wreck. I feel the depression creeping in - I don't know if I'm strong enough to fight this all....

Glad these boards are here....and I certainly hope someone read this.... (sorry so long)

Thanks,

~Keri

Keri, welcome to NeuroTalk.

You are strong enough :hug:

There is a Tysabri thread at the top of the MS forum. It's a "sticky" and there are many knowledgeable people who know what the Protocol for Tysabri is but I believe you can choose to start out with Tysabri - http://neurotalk.psychcentral.com/thread37891.html

I'm not too happy about your neuros comment - There is no way to know when or if you will have another exacerbation and exacerbations can take more tham 3 months to resolve. In my opinion it's a little too soon to have a prognosis.

MS is a strange disease. You can be at your very worst with this disease and in time (it could literally be months or more than a year) start to see improvements. This is known as relapsing/remitting. That doesn't mean all of your symptoms or disabilities are gone but that your doing better than you were.

It's very possible to have many lesions with little disability or only a few lesions with more disability. There is no rhyme or reason with this disease.

Has your neuro talked to you about symptom management meds?

Vertigo - http://www.nationalmssociety.org/sit...book_dizziness

Fatigue - I know your using Provigil but here is more information about fatigue - http://www.nationalmssociety.org/sit...cebook_fatigue If your still dealing with an exacerbation that could be why your fatigue is so bad.

Information about the prognosis of MS - http://www.nationalmssociety.org/sit...book_prognosis

You might also consider Physical Therapy (PT) -
http://www.nationalmssociety.org/sit..._sourcebook_pt

HI
 

My Name Is Judy And I Have Ms For 28 Years. Walk Kinda Gimpy But Still Live A Good Life. Would Love To Hear From Others. Boomer Lady

Hey, nice to see ya :)

:D:grouphug:

Hey, Larry, nice too see you too. Where have you been hiding? Did you find *the cure* and forgot to tell us.:D

been hanging out at Daily Strength the last few months

Welcome Judy! I like it - "walk kinda gimpy but still live a good life." This description applies to me too! I've had MS for 20 years.

I think Cindy lives close to you (aftermynap). Like, real close...

Tom

Thanks
 

Hi Snoopy -

Thank you. I'm trying to remain strong right now. Calling neuro tomorrow to ask him to get the ball rolling on the Tysabri. I know it isn't a miracle cure - and I know it takes time - but I don't want to wait to get started.

I will check out all the links you sent. I've read so much about MS and treatment, my head is spinning from that all by itself, let alone the MS. :eek: LOL

I try to keep my humor about me....sometimes I horrify my friends when I make jokes about the holes in my brain....but hey, they're my holes...I can talk about them any way I want to! We're becoming good friends, me, my holes, my grey spots, my lesions.... :p

I'm already "showing up" my neuro. I saw him a week or so after I did the IV/SM - and he was shocked at how well I was doing (not that I was well) - but that I was doing so much better. He hadn't expected such a marked improvement so soon (though he filled me up with 1 GRAM of SM a day for 7 days - what did he expect?!). I told him I had no intention of going down silently - and that he should take the prognosis and rewrite it immediately!


Thanks for responding - it helped me feel less alone. This disease is a lonely one. And a tiring one. :(

~Keri

New too!
 

Okay I had to come on over and join in on all of the fun! I posted this in the main forum before I realized there was a newbie thread here!

I kept the same username from "my old house" hoping not to confuse anyone. (3qtkids)

36 years old, 3 kids, a hubby of 16 years, and... oh, MS for the last 5 years. Only dx'd for a little over a year but trust me it's been around longer than that!

Hope to get some good advice, meet some wonderful people, and join in some lighthearted conversation!;)

Angie

Keri,

I can say I know exactly how you feel. I've been off work since October 15th with what my neuro termed a severe exacerbation. I had 5 days IVSM (1 gram per day) outpatient which did nothing and was then admitted to the hospital and was given another 6 days same thing. The numbness you describe and feeling like dead wood sounds like what I have felt every day. I could not walk for almost a month. Now just going to the grocery store wears me out, never mind a full work day! The lack of cognitive function was unbelievable. I would pick up the phone to answer it and then not remember what I was supposed to say. I would just stare at it like "what am I doing???" I too have had to use a shower chair and stuff just to get by.

I am also on Copaxone which I continued injecting daily through the entire ordeal. Please read this next part with caution as everyone is different. I have read many threads and done research on side effects of Copaxone. Some say yes, others say no - just like with almost everything. But I have read that some have experienced overwhelming fatigue while on it along with sleep disturbances.

I chose to discontinue use of Copaxone one week ago. I must say that I have noticed my energy level seems to be increasing slightly day by day. By no means am I back where I was, but if they say you have to be free of Copaxone for 3 months before you can start Tysabri then maybe that's how long it will be before it's all out of my system.

You are strong enough to make it!! I truly thought I was going to end up in a wheelchair but it's getting better. It does take a lot longer than I thought it would though and that's why I wrote here. I just wanted to give you some encouragement and let you know that it really might take months but there is hope.

Take care and if I can help or just listen, feel free to PM me. :hug:

WELCOME to all you lovely people, who have just recently joined us. Happy you found us and looking forward to getting to know you better.

:grouphug:

Im a newbie here
 

Howdy y'all !!!!!!

I found this site through another one....can you guess which one????. But I miss my friends who have left...so I have followed them here.

I am a mommy to 3 wonderful boys, 2 dogs, 3 cats. I have been married for 16 years????. (HOLY MOLY!!!!) I am very creative, artistic person (just ask anyone who has seen the giant penguins surfing on my walls :D) and find humor in pretty much everything!!!! I also have lots of great stories to share....that will make y'all laugh at me!!!!

About. 6 years ago I was diagnosed with MS but only after I showed my new doctor an older (10+years) MRI to compare to a recent one. (does that make sense???) Then the testing began...........................

Anyway, I got my diagnosis (and found out all my symptoms really were in my head!) My hubby and i decided to start a family. And boy did we! 3 big boys in 4 years. OUCH!!!! They are 4......3........and 2 years. They are so wonderful.....hmmmmm.....especially when they destroy the house!!!!!
My 4 year old was recently diagnosed with Autism. He is a bright, smart little guy who is about 4 feet tall. My 3 year old is also bright, smart and very charming he is a little shorter. My baby is 2 years old...what a ham!!!!! We are starting to see delays with him now.

Yes, I have my hands full !!!!!

I have lots of medical issues and have been called a medical mystery by some. I get mind blowing headaches and most recently all over body pain.
I am currently on Cymbalta and Rebif.

As I tell my hubby all the time: "I have a little bit of everything.....not enough to kill me....just enough to make me cranky at times!!!!!" :eek:

Hope to get to meet y'all soon!!!!!!

Hello. I'm new and newly diagnosed. I'm 27 and live in Northwest Indiana with bf of 4 years and our baby...Toby II... a one year old, completely spoiled, Yorkshire Terrier. During the week, I work full-time in downtown Chicago as a property tax analyst.

I started on Copaxone last friday and so far so good...just the normal injection site reactions...redness, burning, itching and welts the size of my palm. :)

I also use the same screen name on three other forums....Daily Strength, MSWorld Forums, and Yorkietalk.com. I tend to be more of a forum stalker than a poster but will occaisonally chime in. Well, I just wanted to say Hello!

Hey Motors and Toby!!! Glad to see you both here!

Welcome MotorsMommy and Toby. Nice to meet you.:)

Yippee - Sharon's here. I can't believe I missed this. So glad you decided to come over to play.:D:hug:

Hi, I am a newbie to the site and was so glad I found it. I am having trouble navigating so I hope this posts correctly. After 3 yrs of testing, I was dx in Nov with MS after several new brain lesions. In the last 5 years I've had 3 neck surgeries and 1 low back surgery so its hard to know what is back related and what is MS. I started on Copaxone in early Jan but had to discontinue it mid Feb because of severe injection site reactions. I will be starting on Betaseron soon and hope for better results.I think my biggest problem has been the depression. I am 51 and went from being a Detective for 20 yrs going at full speed to a dead stop after my last two back surgeries within 6 mo. I really don't feel sorry for myself because I am still so blessed. I know it could be so much worse. I am still hoping and praying to get my SS. Cutting back to just my husbands salary, with all the medical bills piling up plus having to pay my own insurance now is tough but I know God will see us through, he always has. I look forward to talking to each of you and sharing this experience..........

Hi, Sharon! :Wave-Hello: Welcome to NeuroTalk!

Boy, that's a mixed bag if ever I saw one. Sorry the road has been so long for you. We have a great bunch here, so, feel free to join in anywhere or post a new thread. :)

Welcome Sharon, Nice to meet you. :)

Sorry for why you're here, but glad you found this friendly place. Join in anywhere and enjoy.:)

:hug:

trying to get used to all this
 

I have two beautiful kids--girl age 5 and boy --9 and I just learned on tuesday based on an mri and confirmed yesterday with neurologist... pretty freaked out...not sure when to tell them...it is also tiring to tell my extended family...my husband is not being that supportive--this could be a major relationship strain...along with all the other yuckiness....i am glad i found this forum...need to take a break and stop reading all the good and bad stuff....i didn't even think about the cost of the potential meds i have to choose from...we are both attys for gov so work issues shldnt be a prob...also i seem to have the mild form...having probs sleeping...dr. prescribed something but i am hesitant to try it...each day my vision seems to get a little better so i remain hopeful, and scared, and angry and sad...but have to suck it up for my family....thanks again for being here--all the posts today have been really helpful.
Mary but not so merry in md (volada)

1st symptoms--01-27-08 (blurred vision)
dx 02-12-08

Welcome Volada..:) I'm happy you found us here at Neurotalk. It's the nicest place for you.

Sheesh, you are a real newby, aren't you....to NT and MS. We have all been where you are, Mary. We know what you are feeling. If you have any questions, ask away.:)

:hug:

Hi, Erie Pa Here
 

Hi All,

First I will tell a little about myself, I am a male, single father, I have just turned 51 years old, own my own home outright, divorced now for 15 years, have 2 boys 31 and 18 years of age, the 18 year old lives with me, right now he is a Freshman in college. I live in northwestern Pennsylvania...... I have only dated about 6 women in the past 15 years and that was MY choice as I basically have devoted my life to raising my son, working, taking care of him and the house with very little time for anything dating related.....so that is why I am single.....

I work full time as a printer with sometimes a lot of overtime also, have my medical insurance paid for by my job and myself in a copay. Only a few people that I can trust at work knows of my recent plight and I do not plan on telling anyone else there if I don't have to.

I am new to this board but not new to my diagnosis. I've had symptoms that became ongoing since Nov 2005, after a bunch of MRI's and othert tests I was loosly dianosed in July 2006 but my neurologist wouldn't confirm it until he went through a few more MRI's and he finally confirmed it the day after Christmas 2006. Just a few people know of this as my symptoms are not relevant to anything I do and also not outwardly visable to any one, (blurred and sudued vision, burning and redness of eyes, numbness all over the body, dizzyness, some fatigue and some cog issues at times). MOST of the time I am ok with this and have gotten used to it but other times it is a struggle. I started out with Copaxone last February but didn't do well on it and then switched to Rebif in October and so far so good!!

Currently we are in the middle of winter up here in Erie, Pa and I SO hate it, depresses me so much, I can't wait for the spring!!.......:-)

Well, I just found this board today and signed up, I see a bunch of the same names that are on MSWorld so I put this link in my favorites and will stop back from time to time to see what is going on............so until then, HI Everyone!!

Intro
 

Hi My name is Chandra. I live in Maryland (right outside of Washington DC). I was diagnosed in Nov 2002 and for a few years lived in denial of the symptoms I experienced. I am currently on Rebif and am interested in chatting with others on here who have MS as well.

Hi JoeMac and Chandra and welcome to NeuroTalk!

There's a great bunch of folks here, lots of information and places to just talk and laugh too!

Welcome to Neurotalk, JoeMac and Chandra.:) So nice to have you both here.

Just jump in anywhere. We are all here for each other..:grouphug:

SFEMG, confused, possible MS?? Yikes
 

Hi,

I'm not sure if this is the right or the safest place to share this but I'm am very overwhelmed and bewildered by the things that have transpired today.

i have had a puzzling array of symptoms since I was 16 years old (I am 24 now). Fun things like severe muscle weakness, severe doubble vision with drooping eyelids, fatigue, weakest in the morning and late at night, limb weakness (esp in the legs and feet) balance issues, things like that which come and go like the wind and seem to have no rhyme or reason. I'm am scared out of my mind right now b/c I just had a single fiber emg to "rule in MG" and it did the exact opposite. MG/neuromuscular disorders were effectively ruled OUT today after a year of taking medicine for and thinking I have myasthenia then i suddenly find out that i do not have MG and my little world was turned upside down!!!!

It started with doubble vision and 25 prisim dopters of prism in my glasses then eye surgery then MG diagnosis now that has been retracted and more diagnostic tests are being run and I am so scared!!! :confused: and upset b/c I want so desperately to live a normal life and now it feels like life is over (at least a full normal life of the kind that i want to led). I wanted the MG to be ruled out but at the same time i wanted nothing else to be ruled in!

i am so overwhelmed right now. Has any one else out there ever been through what I'm going through right now? how did you handle it.

I am still waiting for the results as the SFEMG test was just today but when i started thinking back on the past week when i have been off the mestinon it has been so rough. i know mestinon is not too effective for MS (and my neuro told me DO NOT go back on the mestinion) but for some odd reason it helped slightly that is until the side effects took over! this past year has been a physical nightmare with the physcial decompensation of things like muscluar control, and thigns like that. i used to play several sports and be so active, but now I can't do so many things that i used to love and even things that i once took for granted like walking accross a room easily. that is a huge task now frought with grabbing walls and furnature and other things like that which are so humiliating. It has about driven me up the wall today to know that everything is up in the air and that i have a lot more diagnostic tests comming up. we have to travel 2.5 hours to see my neuro and it is just really hard. any encouragment and insight would be greatly appreciated.

sincerely bobcat (Rachael) :eek:

Welcome Rachael to the club..:) You didn't mention if your Neuro is testing you for MS or not???

What you describe sure sounds MSy, but so do other diseases. The DX process can be a long tedious affair for some people. Hang in there and let us know how it goes.

We will be here to support you through it. :hug:

New member in PA
 

Hi,
I'm glad I found this community. :)

THANK YOU!!! It is a tough process alright. Misdiagnosed with MG for a year and now after all the treatments for that they say i do not have it. Oh joys! I don't know WHAT my neuro is looking for or at or up or anything. it is so confusing. MS is the only thing that even remotely makes sense :Thats-Funneh: isnt' that a weird thing to say! I have had the electric shocks running down my arms and spine when my head bends forward for about 3 months. Isn't that weird. It is probably in the top five of weird symptoms that i have had. Just started the application process for SSA today. even w/o a firm dx i'm applying b/c the ???? :Scratch-Head: is making me very sick and very weak and today is a good day so i think I'll lightly bundle up and head out to the real world and enjoy! because these good days are getting fewer and farther between!:wink::holysheep:

Hi Spirit! :welcome_sign:

We're glad you found us too! Jump right in and introduce yourself! Ask questions! Someone usually has an answer :D

Ahhh Rachel,

I hate to say it, but welcome to the club no one wants to belong to! :)
Sounds like you are having a hard time of it right now. I hope you find your answers soon.

Feel free to ask questions and jump right in. This is a great place with lots of ideas being exchanged and people with experience in what you are going through right now. Check out the Limbo Check in thread, there may be some help there and there absolutely is support from others who know what you are going through.

HI Everyone!
 

Welcome to the Neurotalk MS Forum. I'm sorry as to why you are here, but so glad you found us.

You are the same age as I was, when I had my first MS symptom, 42 years ago..:eek: Yikes, thats right!! Actually. I was 24, but, who's counting.

Come on in and make yourself at home. Just join in anywhere. There are some other 20 somethings here, along with a few Moms, Dads, Caregivers and Grands(Me)

:hug:

Hello everyone!

I am 44 yo & was diagnosed with TM 11 years ago & also have a herniated disc, DDD, & spina bifida in the lumbar area. I have been in a lot of pain for quite a while. I do deal with the pain though & have a very positive attitude. :)

I found this site as I was searching MRI reports trying to breakdown my mother's (82 yo) latest MRI. She has DDD, had surgery 4 years ago (fusion & laminectomy at L3 thru 5. She is a total mess & this MRI report sounds very scary. I'll be taking her to her doc on Thursday so I guess we'll find out then.

This looks like a great forum to belong to & look forward to having & giving support.

Hello
 

Hello :p
I'm new to this mesage board but not so new to MS. It was a nice suprise to find another board to share my experience strength and hope with.

A little about me........
I am a Lovely 50 yr old women living with Multiple Sclerosis
DX with benign MS in 99:cool:
DX with Real MS in 01 & shot Avonex 01 thru 06
Retired/Disabled in 02 going on SSDI & LTD
Started Tysabri in Oct 06 with #18 on Monday & Life has never been better:D


Thanks for being here
DD~

WELCOME to NeuroTalk and the MS Forum, Beachbum and DaDiva, so nice to have you here..:)

Beachbum, you may not want the MS Forum, but search around, there are many forums here for you, and of course, you are also welcome here.:hug:

DaDiva, so sorry for the progression of your Illness. any of us have been there-done that. So join in anywhere and become a part of our loving Family of PwMS.:hug:

Oops! Sorry, just realized that I introduced myself in the MS forum.

Just stopping in to welcome the new folks! Hunidew, BeachBum and DaDiva, you just stumbled on to the best support board on the net!

Come on in and set a spell, check things out, ask questions and have fun! There's always someone up! We're like a 24 hour store, when you need milk, it's open!:)

Thank You All for the Nice Welcome:)

:D Today was #19 of Tysabri :D
I LOVE the Stuff!!! It's working for me - Yippeee!!!

MS is just a small part of my life these days. Tysabri has given me my Life back!!

Like I said before - Life has Never been better!!!

Best Wishes to All
DD~

DaDiva, I am so happy that TY is working for you. You may want to report your possitive experiences on the Tysabri "sticky" thread.

:hug: