New to Forum but not new to MS
 

Hi everyone. I have had MS for 21 yrs. I am in the secondary progressive phase now. I joined here in part because I am trying to find out if anyone knows anything about tapering off Lyrica and triggering regular daily spasms. Can't get help from my doctors...yet. Several recommendations - none of which I like. Is there a particular place I should post or look for more info?

Thanks

Melanie:)

Hi Melanie and welcome to NeuroTalk! :welcome_sign:

What condition were you taking Lyrica for? Was it for MS? We have a Medications Forum.....here is the link.....http://neurotalk.psychcentral.com/forum72.html. You might want to start a thread about Lyrica and ask any questions you have about it. You can also start a thread in the MS forum if that is a more appropriate forum.

You can also do a search and see a collection of all threads that deal with Lyrica.

Hope this helps! :)

HI MJ I have no idea about Lyrica, but would think that if you post on the front side of the MS forum, several here use that med, and can probably help you. :hug:

Welcome Melanie!!:hug:

Hello, I just joined today. I am an old MSr of (21 years)

Hi hazreg and welcome to NeuroTalk! :welcome_sign: Sorry to hear of your MS but glad you found us here. We have lots of members with MS here and always welcome newbies to the group. There's also a gluten intolerance forum (http://neurotalk.psychcentral.com/forum13.html) so I'm sure you'll find lots of useful information on this site. Join right in and let any of us know if you need help. :)

Welcome Hazreg, nice to meet you..:)

90% DXed
 

My name is Teri and as the title says, my 2nd opinion doc says he is 90% sure that I have RRMS. I go next week for head, neck, upper and lower back MRIs and the evoked potentials. I did tons of research and brought my sx and concerns to my first doc and he would budge off of a peripheral neuropathy and essential tremor diag.
I just turned 50 this week and am actually happy to have found a doc who took the time to listen to all I had to say and ask. I know that the sooner I start meds, the better off I will be.
It is my hope that I can continue to work as long as possible as a k-2 reading teacher as I am a single parent and am still raising child/teen #3.
Thank you for having me.
T:lookaround:

Hi Teri and welcome to NeuroTalk. I'm glad you found an understanding doctor. They are few and far between! :rolleyes: Let us know how your MRI and Evoked Potentials testing comes out. Glad you found this site! :)

Welcome Teri, nice to meet you. Please do come in and join our family get together..:hug:

New to MS Forum
 

Hi,

I am new to the MS forum. I had an initial diagnosis, and then, my Neuro retracted it, because he didn't want to "label" me with MS.

So, I have been through a multitude of tests and continue to live in pain.

Chelle

Welcome Chelle, so glad you found us. Yeah , my Doc said the same thing, when he DXed me...35 years ago...LOL!

Come on in and join us, won't you? :):hug:

Thank you for the welcome, Sally.

I'm glad I found you, too. :)

I'll definitely come on in and join you, although, I will be away from Monday until late Thursday.

My D.O. just continues to medicate me for the severe nerve pain in my spine, and my DH decided, "Enough is enough", and made an appt. for me with a Spine Specialist, whom I saw on June 14th, had a new spine MRI, which we will see him on Friday to get the results.

Chelle

I'm praying to God he can help me. I've been through so many tests, seen so many doctors.

Welcome Chelle. After reading a bit more about your story it sounds similar to mine. My very first MS sx was in my GI tract! not in my head! I explained it in the bathroom thread you started. Its important to get your MS MD and your GI MD to be on the same page.

I am glad you are finding answers. :hug:

Hi Chelle and welcome to NT! I hope your MRI explains some of your symptoms. It's awful being in pain but not being able to have a reason for it. Let us know how your results turn out. :hug:

Thanks for the lovely welcome, Dejibo!

And thank you for all of your input. I didn't know there was anyone out there with my exact problem.

I'll chat with you on Thursday.

:hug:

Chelle

Hi, Kitty!

Thank you so much for the warm welcome. I am so happy to have found this forum family.

I will definitely let you know the results of my MRI.

We are going away for a few days, but I will be back Thursday.

:hug:

Chelle

Hi Yorkieville,
Enjoy your vacation and be sure to come back here. We welcome you to NT and hope you find the answers to your symptoms. We all need a name to what is bothering us. Eventually they find out. Nice to meet you and see you soon.

Hi, Lady.

Than you for the welcome. Trip wasn't great. I was tired, and in pain, but it is always nice to be away.

I've been this way since 2005, so I hope you are right, and they figure it out.

It is very nice to "meet" you, too.

Chelle

Hello Everyone!
 

My name is Frana (Salmone on here) and I', a new member. Was diagnosed 7 years ago with relapsing/remitting MS and have been on Copaxone for six years. I haven't been ab;e to see a neurologist in two years due to my insurance and my health has really taken a turn for the worse. I can't sleep, having trouble eating, very week and my doctor just will not listen or dosen't care. I don't know where to turn. Thank you for listening.

Hi Frana! Welcome to NeuroTalk. We have several members here who've had the same problems you're having with Copaxone. Hopefully one of them will come along soon and tell you their story. We have lots of caring and supportive members here who'll help you in any way they can. Glad you're here! :hug:

Welcome Salome! I know EXACTLY how you feel. I was diagnosed in 2006 and went on Betaseron which made my liver very unhappy. Switched to Copaxone, and it took the full year to start working for me, but once it did, all was well until...it all started to fall apart. I had belly upsets, tummy pain, extreme constipation, pancreatitis, my tummy stopped working! I felt like I couldnt think, my brain simply left me. with each day I become more and more miserable.

They told my husband that if we stopped taking Copaxone that within six months I would have such a large replase that it could potentially be the one that blinds me, or lands me in a wheel chair. They really pushed hard and scared us! We did our research before we decided a thing. #1 copaxone has about a 33% chance of preventing the next replapse and IF it does prevent it, it has about a 10% chance of making it less severe than without Copaxone. Hmm...not the odds I was led to believe.

The fat was being eaten right off my bones with each injection. The dents got deeper and so did my mental state. I felt awful. Dragged thru each day. I ended up in the hospital after a steroid treatment with IV stuff, and that was a forced holiday from the copaxone. I noticed that with each passing day, I felt better. I got more energy, I could think. I was stronger. I told the MD that I was grateful for his help but STOP! I was no longer taking this medicine. I got an arguement and then he saw I was serious. Each time I go in for my check up he strongly advices me to get back on one of the meds, and each time I say NO thank you! its been a year now.

Please know that MY story is exactly that...MY story, and yours may vary widely from mine. MS is like fingerprints we all have a different version of it. Since stopping, I am up and off the couch. I went from walking outside to get the mail, and then to the end of the street, and then around the corner, and then around the next corner and then up the hill. I am 13 months past when I stopped taking my C, and I am walking 3 miles each morning. I can cook again, I can participate in a conversation without losing track of what we were saying on sentence #2. I feel like I got some of my life back.

Do I still have MS? Yep! you betcha! its still wreaking havoc in my life. I go blind when I get hot. I have bad MS hugs, I stumble and fall, and its clear that I still have MS, but Copaxone was not the right drug FOR ME. please let me empasize that, FOR ME it wasnt a good fit.

What ever you decide to do, PLEASE talk to your MD. if he isnt listening get a new one! The #1 reason folks stop taking the meds for this disease is the side effects. Some cause depression, some cause confusion, some dont notice a difference at all, and go thru their day greatly improved by what this med added to thier lives, but there are some of us that it isnt helping, and as a matter of fact its adding more stress, and trouble than it was supposed to fix. I am sorry you are having trouble, but please know you dont stumble alone.

TALK to your family. What do YOU want to do? Present yourself as a family to your MD and ask him to help you and your family get to YOUR goal, not his...yours! I knew that even if it meant a wheel chair for me, I couldnt do it anymore, so its a risk, and a sizeable one, but I leapt and look at me now.

Come to the message boards and tell us about yourself. We would love to hear your story. :hug:

Hi, Frana.

Welcome! I'm a fairly new member, too. I am so sorry that you are suffering.
I can relate to how you feel.

My Neuro dx'd me, in 2008 and then, retracted his diagnosis, because he didn't want to "label" me with MS. Therefore, he has prevented me from getting the help I need.

I lost the sensory nerves in my internal **** sphincter muscle, therefore no urge to have a BM. NOT FUN. G.I. Doc called him and told him it was MS.

I live in pain, 24/7, can't sleep without drugs, lost 18#s in '06, and weigh
76#s, and I am 5'2.

Poor appetite, too.

I wish I had some answers for you.

Hopefully, someone in the forum will have some advice for you.

Chelle

Welcome Salome. glad you found us. Can you call the Neuro, who put you on Copaxone and see if he/she would switch you to another MS med? :hug:

Newbie
 

Hi...my name is Debby and I am a Newbie here. Just got info from and ER CT Scan that looks like my boyfriend has MS. This is kinda overwhelming to me and him both. But I am trying to find out what others are feeling. The scan shows that he needs MRI to be sure. But seems to have symptoms of it...Very Fatigued...Headaches...double vision which started a week ago...the reason he had the CT Scan was from a fall off of a concrete bench at the Motel he is staying at during the week for work. The Paramedics came and had him on a back board with a colar on his neck also...and this was how we fond out. Anyone that can help me to know what to face would be greatly appreciated. I am scared but find that I am stronger when others are in it with me.

THANKS TO YOU ALL!
Debby

Hi Debby...welcome to NT! :)

It's very overwhelming in the beginning so just take a deep breath. You can feel like you have to try and process and understand all the info being forced on you at once. You'll find lots of caring and supportive members here who have all gone through the initial "what just happened?" stage.

My first suggestion would be to find a Neurologist that specializes in MS. They'll be most likely to perform the correct and necessary tests to confirm the diagnosis.

You're very sweet to seek out information and support for your boyfriend. Understanding the disease is so important and helpful when you're trying to be supportive of someone just diagnosed. I hope you'll take a look around the forum.....there's alot of good information here.

Hi Debby. im another Debbie. ((Hugs)) hang in there. The process of being dx is scary, but as we tell most folks, there are more than 100 diseases that can mimic MS including lesions in the brain, balance issues, visual issues and so on. The MDs will start with the easy ones to disprove like Vitamin def. Lyme, lupus, Vit B stuff, and so on till they start reaching the bottom of the barrel. Since there is no one test that says "aha! its MS" they count on ruling out all the other ones first. It can take time, be scary, and frustrating. Make sure you get to an MS clinic. Those big boys are really good at this and can help expedite the process and show you tons more resources than the local nuero guy can.

KEEP NOTES! keep detailed notes with dates. Keep a copy of the medical records, tests, MRIs and CT scans. They will put them on a DVD for you now. Keep a symptom journal. Is the vision better or worse with heat? cold? rest? stress? Is his fatigue better or worse with heat? cold? rest? stress? you get the idea. The more detailed your records, the faster the teams can help you get to the bottom of this.

#1 dont panic! tons of us wandering around with MS that are doing just great between episodes. OThers of us are not so great, but there is a huge swing in the middle, and most folks fit somewhere in the middle. Breathe! take some stress free time and enjoy a walk (an eye patch will help greatly with double vision) or enjoy a massage or take him to a ball game. (make sure he are in the shade. Take plenty of rest breaks, and learn to slow down and spend time in the moment, and not be focused on tomorrow or the next test.

Come back and tell us what is happening.

Relapse after 14 years
 

Hi Everyone,

My name is Cathy and I have had MS for 14 years in a very mild form. I started a relapse 3 weeks ago and haven't had one in 14 years. I went to another neuro in the practice I go to, and he did testing on me, and said I don't think you have MS or you have it in the mildest form I have ever seen. So he ordered a bunch of kidney and liver tests and included some advanced tests too. All came back in the normal range. He told me if I had MS, there is no need to take the medicine. So I went to my regular neuro and the first question he asked, was are you going to take Copaxone. I was on it for 5 years, and stopped when I had to start paying $1,000.00 a month. Anyway, he heard what the other neuro wrote, and he ordered even more blood work plus a thorasic and cervical MRI, and that showed an active lesion.

I have MS in a relapsing remitting form and my sister has it too, but she has the progressive form. Also had two cousins with it.

Well, that is my introduction and now I have a few questions, and will ask them on the main board.

Cathy

Hi Cathy! Welcome to NeuroTalk. :welcome_sign:

Thanks for sharing your story with us. Feel free to ask questions and share ideas that have worked for you. We've got a large MS community here and we're always ready to welcome a new member. It's sort of the club you don't really want to join......but we try to make the best of it and we do have some fun at The Stumble Inn (http://neurotalk.psychcentral.com/forum102.html).

Welcome Cathy. Very nice to meet you.

Your story is like mine. I was DXed with MS in 1975 and then had a 17 yr remission. In 1992, I had a 2nd exacerbation and was DXed again..:eek:

HI Cathy! welcome! pull up a chair. :hug:

Thank you. It feels very nice to be welcomed.

Cathy

Yes our stories are very similiar. A friend used to ask why I never mentioned that I have MS. I told her that I am lucky as I have it in this mild form so it really never bothers me.


Thanks for your lovely welcome.

Cathy

Hi to all the new people. So glad you joined us. We love new members and there are so many new faces around here. :)

Wonderful! Sorry you have to be here but we make it fun and try to help as best we can. We are always learning too.

Welcome, and nice to meet all of you that I haven't had a chance to greet.

hi, just introducing myself. Its my boyfriend who has MS. I'm the active one on our relationship always researching and reading up on his condition. We hardly talk about it, as that would make MS more 'real'. But he trusts me on everything I tell him lol. Wish he would become more involved in his own health. oh well. I'm glad I found this forum!

Welcome to everyone who's new! Join right in on the forum....lots of good info and nice people. :)

Hi again TL..:hug:

I'm glad I found this group!
 

Hello - I very recently received my diagnosis of MS. It was a relief - I've been walking around with the "probably MS" label for four years and I'm glad to be out of that Limbo.

I am trying to decide whether to treat the disease or treat the symptoms and I'm hoping to find some advice here. I have heart disease and diabetes as well, so I have to juggle medications, side effects and costs.

For what it's worth, I'm definitely a Glass Half Full kinda girl, so I'm ready to tackle this new obstacle.

I am looking forward to 'meeting' you and I want to thank you all for providing this soft place to land.

Hi Whoop! welcome to the club house. I am sure sally will teach you the secret handshake and Kitty will show you the private members entrance. I am sorry that you have to learn about this disease and put up with all of its members, but you are in a great space.

Pull up a chair, and tell us about yourself. Feel free to post anywhere you like. :hug:

Welcome home Whoopedo....love the name..:D :hug: