NeuroTalk Support Groups - Hi Newbys....Please Introduce Yourselves

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NeuroTalk Support Groups (https://www.neurotalk.org/)

- Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)

- - Hi Newbys....Please Introduce Yourselves (https://www.neurotalk.org/multiple-sclerosis/4543-hi-newbys-please-introduce-yourselves.html)

Blessings2You

10-23-2010 04:38 PM

Hi Juanita, and welcome to the neighborhood. This is a good place, and you'll be glad you came. I know you'll find lots of support here!

SallyC

10-23-2010 06:41 PM

Quote:

Originally Posted by jdmassey (Post 707851)

Hi - My name is Juanita and this is my first time on th NeuroTalk site. I was DX with RRMS in 12/09 but have been suffering with all the symtoms since 1980. My first symtom of MS was Optic NU. I still have so many questions and it is so good to find others who understand MS.

"Thanks Juanita

Welcome to our Club, Juanita, so nice to meet you. My first symptom of facial numbness, was in 1964 :eek: yes I'm that old.:D

Come on in and join us anywhere, please.:hug:

Kitty

10-23-2010 07:31 PM

Hi Juanita and welcome to NeuroTalk. I've had ON, too, and it just stinks! I hope you'll find the friendship and support that we all have found here. Hope to see you around the forum. :)

Lady	10-24-2010 12:37 AM

Hi Juanita and welcome! Pretty name. It sure took you many years to get a dx of MS. I am sure you did suffer a lot. I, too, had Optic Neuritis twice. It didn't last too long, but scares the heck out of you. :eek:

I'm so glad you found us. We love new people. I hope we can help each other. We are a very caring group of people.
Nice to meet you.:)

Judy2

10-27-2010 03:24 AM

Hi Juanita and Welcome to NT! I'm sorry you have to be in this "club", but this is a great place for caring support. Yes, I've had optic neuritis twice also, once a long time ago, 1976, before MS was even mentioned. Hope to see you around and get to know you better! :)

lisadko

11-05-2010 06:40 PM

Hi, I was diagnosed with MS in January 1998. I didn't start medication until after my second child was born. Started Avonex in 1999. Took that for about 6 years until I had a big attack and my neuro switched me to Rebif. I have been on that for the past 5 years. I have to admit that I wasn't the best at taking the shots three times a week. I recently had a bad MRI and now my neuro wants me to swith to either copaxone, Tysabri, or gilenia. I know I can't do copaxone. If I was not good about 3 times a week I'm sure I would be a nightmare if I had to take a shot every day. I am so torn between the T and G. I would like to take the G but am worried because it just came out and because of risk of infection. Have been trying to research my options and came across this board. If anyone has any input I would really appreciate it.

Thanks,
Lisa :)

SallyC

11-05-2010 07:47 PM

Hi Lisa and welcome to NeuroTalk.:)

I'm sorry that the MS Meds arent working for you so far..:( That's a long time to be shooting yourself for nil.:(

I don't have any suggestions, other than LDN, because It has help me to stay stable, when the DMDs did not.

I hadn't tried Tusabri and for some, it works and seems to be a good thing, but for some, it does not work at all and then of course, there is that looming risk of contracting PML.

I hope you stay right here and work it out with us. There are plenty of people here on one DMD or the other, who will tell you of their experience. We will support you, whatever method of treatment you choose.:hug:

Dejibo

11-06-2010 07:41 AM

hello Juanita and Lisa! Welcome to the club house. Pull up a chair and join us. :hug:

Dejibo

11-06-2010 07:44 AM

Quote:

Originally Posted by lisadko (Post 712912)

I just stopped taking copaxone after many years, and a failure off of Betaseron. since I had a bad reaction to the Beta, I am not eligible to do Ty. I cant advise you on Galina other than to say I am hanging back and waiting to see what happens when they put a much larger group on it. The clinical trials were so small and a tight knit, well chosen group. Lets see what happens when everyone gets a chance at it. Please read, read, and re read all about it. it carries alot of risks, just as Ty does. Its a choice that deserves great research before its chosen.

Welcome to the club house!

Dejibo

11-06-2010 07:46 AM

Quote:

Originally Posted by jdmassey (Post 707851)

Welcome Juanita, I have had ON several times. Come on down to the main forum, and ask away! we love questions. :hug:

Lady	11-06-2010 12:40 PM

Hi Lisa, Welcome to NT! :)

As Dej and Sally said, take your time deciding which drug you want to try next. You have been on two biggies already and still had progression, as shown on your MRI. Ask questions on the Tysabri thread sticky, or down below on the main forum.

We are here to help and listen too. We are glad you found us. Nice to meet you. :)

carebear01

11-06-2010 04:05 PM

Hi, About two and a half years ago I was diagnosed with MS. I had just started a new job when about three or four weeks in to it, I started feeling a bit all balance and then had terrible eye pain. I didn't have the blurryness or loss of vision that everyone talks about. My co-workers told me it was probably just stress with the new job and looking at a computer screen all day. This went on for a couple of weeks so I went to my eye doctor who couldn't really find anything wrong, but gave me eyedrops anyway...which didn't help. I then went to my GP who sent me for a corotid doppler which turned out fine. She then sent me for an MRI of brain and C spine. As it turned out I have several very small lesions in the white matter but not on the spine. I had tons of lab tests and was sent for a lumbar puncture which ruled out every other disease and illness...so I was told it's MS...so here I am! Hoping to talk to others to get advise and just compare notes. I really don't want to talk to my family about how I'm feeling because I will sound like a hypochondriac...heaven forbid!! Although, I should add that my husband is VERY supportive of me. I get around just fine. My symptoms are mostly fatigue and cognitive issues. Symptoms come and go but nothing major.

Dejibo

11-06-2010 04:28 PM

welcome carebear. Pull up a chair and hang out a while. :hug:

Judy2

11-07-2010 02:56 AM

Hi Lisa and CareBear and welcome to NeuroTalk! Sorry you have to be here, but since you do, jump right in and join the group. Hope to see you round and get to know you better. :)

carebear01

11-07-2010 12:59 PM

Thanks for the very warm welcome!:hug:

Lady	11-12-2010 09:02 PM

Hi carebear,
I want to welcome you too. It's not fun having MS, but it is nice having friends here that understand and care. We listen and try to help if we can.

So glad you found us. You can vent or just talk, ask questions if you want. Family members don't always get it, we do. I'm glad your husband understands and gives you support too.:)

Nice to meet you. :):)

saurian

11-14-2010 08:11 PM

Mommy needs help

My name is Starr i am a happily married 33 year old female who was born in the north but raised in the south.I am a mother of two crazy teenagers suffering from many neurological issues but cant get a diagnosis because i dont have medical insurance and like many others i cant afford to pay to see a neurologist can you or someone help me? I have been told its possibly
MS
ALS
EPILEPSY
CONVERSION DISORDER

HERE ARE MY SYMPTOMS

Muscle pain,weakness and numbness in the arms,legs and back
migraine headaches
seizures
visual blackouts
pinched nerve sensations
slurred speech
feet dragging at times
delayed swallowing

saurian

11-14-2010 08:28 PM

Quote:

Originally Posted by Lady (Post 715237)

Hi
My name is Starr!
I am a 33 year old broke, happily married mother of two.I have been struggling with many neurological problems for the past 12 years but have yet to get a strong diagnosis on paper but have been told that it could be MS,ALS,EPILEPSY or a CONVERSION DISORDER! Its wonderful to meet people who might understand how i feel everyday.

What causes these symptoms
Muscle pain,weakness and numbness in the arms,legs and back
migraine headaches
seizures
visual blackouts
pinched nerve sensations
slurred speech
feet dragging at times
delayed swallowing

SallyC

11-14-2010 08:30 PM

Welcome to NeuroTalk Starr. Your symptoms do sound Neurological. Do you have a free clinic in your area?

We will support you through the Diagnosis (DX) process but we can't DX you here.

Let us know how you are doing and take care.:hug:

Dejibo

11-15-2010 09:01 AM

welcome saurion, so happy you found us. I hope we are able to help. I answered your post in the main forum. Welcome! :hug:

Chilax

12-06-2010 11:43 AM

New Member

Hi,

I was diagnosed in October after four weeks of diplopia. I have several lesions in the brain and one in the cord. My EDSS is 1.5. My symptoms include poor balance, weak left leg / arm, and memory.

I was on IV steriods last week and oral for one more week. After discussing the DMD treatments with my MS neuro we decided on Gilenya over Tysabri. I read the Tysabri & Gilenya efficacy / safety Trials and I concluded the benefits of Gilenya outweigh the risks.

Do you use Gilenya? What has your experience been thus far?

Thanks in advance.

Al

Kitty

12-06-2010 01:52 PM

Hi Al and welcome to NeuroTalk!

I'm sorry to hear about your diagnosis but glad you found this site. You'll get a bunch of support and understanding here.

When you get tired of MS come on over to The Stumble Inn. That's where the MSer's go to have fun and get silly. Here's the link: http://neurotalk.psychcentral.com./forum102.html

SallyC

12-06-2010 09:23 PM

Welcome to NeuroTalk, Al. Nice to meet you. Come on in and join us.:)

I was on Avonex then Copaxone and now on LDN. I wish you luck on your choice of MS meds..:hug:

Dejibo

12-07-2010 08:13 AM

Hello! nice to meet you. Pull up a chair, and join us. :hug:

Snoopy

12-07-2010 10:45 AM

Hello Chilax and welcome to NeuroTalk :)

NurseNancy

12-15-2010 11:41 PM

hi al and welcome,

i don't know anything about your med but just wanted to say welcome.
come on in and stay awhile. this is a great site with great people.

karenfut

12-16-2010 02:18 PM

ok well here it is i dont know if i have m.s yet have an appt the 23 of dec i do have neuropathy in both legs walk like i m drunk i have the clenching at night when i try to sleep and like i need to streach my legs my feet feel like balloons and the cold they are so cold then burn so what do i need to do to fix this please help i m 52

SallyC

12-16-2010 08:03 PM

Hello Karen and a big welcome to NeuroTalk. Im sorry for the reason that brought you to us, but glad you found us.:hug:

I hope you will come on in and join us anywhere and ask anything. A bunch of people here have gone thru or are going thru what you are experiencing right now.

Let us support you.:)

Kitty

12-16-2010 08:43 PM

Hi Karen and welcome to NeuroTalk. You'll find lots of support here.

Good luck with your appointment on the 23rd. Please write down any questions you might want to ask the doctor and take the list with you. I still have to do that and I've been seeing the Neuro now for close to five years. If I don't write it down it doesn't get asked! :o

I also found it helpful to keep a symptom log so that when I'm asked what symptoms I'm experiencing I don't get the dreaded "brain freeze". :rolleyes: I write the date and the symptom......that way the doctor can get a general idea of how long something has been going on. Just a few suggestions.

Please come and join us here and let us know how your doctor's appointment went.

invisable

12-16-2010 11:12 PM

Hi All......especially Sheila!

Quote:

Originally Posted by ArmyMahmaa (Post 58051)

Hello.
I am an MS'r of 5 years. And what a 5 years it's been!
The first year was the worst. The second year I did the Novantrone. Great stuff, but hard on the heart.
I advanced real quick into SPMS. My doctor said to me, boy oh boy, you don't waste time, you just jump right in, huh? No tow-dipping first?
I have a pretty good attitude about it all. It is what it is. God has the plan. And besides, what or whom would I fight? God, I think not. It's all about acceptance I believe.
My trip with MS has not been an easy one. I had vertigo for 5 months along with quad-vision. My left eye crossed in. Man what a sight that was. No pun intended. I have wet myself.....in the mall.....with my girlfriend.....we laugh and I wet more. Note to self--always have a sweater to tie around your waist. I have had the numbing everywhere. The trouble walking. Holding my coffee in the morning. What a site that is. Double fisted to sip my java. One of my friends thought it appropriate to give me a bib. How thoughful she was.
I make fun of myself and this disease all the time.
Never mind the checkbook. Can't do it. Yet another job I get out of. hehe No, really, my husband got tired of fixing all the overdrafts. Did you know you need to subtract the withdrawls and add the deposits. whoops No harm no foul, right?
I haven't always been this way. Only since I was picked to have MS.
I used to think I had it all. That I could do anything. That I was smart, and pretty and well liked. I worked hard at my job as a mom, wife and an employee. I had money, savings, retirement, new car, home, furniture. I was on top of the world, so I thought.
Then one day it all changed. And I changed with it. You know. I like where I am today and who I am.
Odd, no more new car, house needs some fixing, no more retirement or savings. Used it all up waiting on the social security. But you know. I have more now than I ever did.
I have trouble remembering things, and tend to make them up as I go. Just kidding (for the most part). Who ever said ad-libing was bad. It adds more spice and depth to the story. And we all like a good story. Right?
When plans are to be made, everyone seems to do it through my husband. I think it's funny. Yet another thing for me not to have to worry about.
I would love to talk with someone to share the trials and tribulations of this here MS thing that they keep telling me I have.
Talk to you soon,
Sheila

The reason I say especially Sheila is not to play favorites, but my name is Sheila too! (Not too many of us around, so we have to stick together.)
Well, we may have something else in common too. I say may, because Docs are not sure about my dx. I have a lot of sensory symptoms with no dx. Spinal tap was neg and only 2 lesions on brain. I insisted on a VEP responce test, I hope that tells us something. I have abnormal sensations all over body, controlled symptomatically by Gabapentin. I also have a slight tremor in calf and a slight internal tremor in trunk. No motor symptoms to speak of (yet). I am 53 years old, if dx'd, I guess it is called the late onset variety.

Nice to share, have lots of anxiety right now over all this uncertainty. Been going on for a year and a half. But, as someone else said.......if I have it, I have it......no giving it back! Trying to accept is the best thing to do.

Dejibo

12-17-2010 09:29 AM

welcome Karen, pull up a chair. :hug:

Noidy

12-18-2010 04:05 AM

Sort of new again

Hi. My name is Josi, and I have been gone for quite some time but would love to come back to the forum, and have missed everyone. I've had quite a bit going on, and my ms has gone through many changes since I was last here. Hopefully by being here I can learn more and help others. It feels good to be back. :hug:

Kitty

12-18-2010 04:36 AM

Hi Josi and welcome back! Everyone is always welcome here so pull up a chair and get reacquainted with everyone. :)

SallyC

12-18-2010 10:17 AM

Welcome back Josi..:):hug:

tattooboy1

12-26-2010 01:46 PM

trying to get off pain meds after 20 yrs help!!!!:(

SallyC

12-26-2010 03:29 PM

Hi Tatoo...welcome. Is your pain caused by MS? We will support you in your fight.

Good luck and good wishes.:hug:

Dejibo

12-27-2010 08:52 AM

Hi Tattoo! Welcome.

Why are you on pain meds? Which ones are you working to get off of? Do you have a plan? a good MD to stand by you? PLEASE dont just stop taking them, it can cause seizures and other disorders. its best to cut back a little bit at a time. You will have much more success if you go slowly.

PLEASE tell your MD what you are doing. The one person in the whole world you dont want to lie to or try to decieve is your MD. If you have a bad egg, go egg shopping and get one who is supportive of you.

Welcome to the club house. Pull up a chair and tell us about yourself. :hug:

Sue Sampson

01-16-2011 04:32 AM

Hi i'm sue sampson, new at this but have had ms for over 11 years. typing is hard at times so sorry about mispelled words.

Snoopy

01-16-2011 06:50 AM

Quote:

Originally Posted by Sue Sampson (Post 735286)

Hi i'm sue sampson, new at this but have had ms for over 11 years. typing is hard at times so sorry about mispelled words.

Hello Sue and Welcome to NeuroTalk :)

SallyC

01-16-2011 11:59 AM

Welcome Sue To Neurotalk and to the MS forum. Please do come on in and join us.:)

How are you doing, at this time, with your MS?

Welcome home..:hug:

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