newly diagnosed

[Stacey van 1]

I am the type of person to "ignore it & it will go away" so I didn't go to the Dr until I lost sight in my left eye. I had been limping for over a year, severe fatigue, headaches, numbness on left side(i thought i was sleeping wrong) pins & needles in many locals, etc.
She admitted me in the hospital & called a neuro in for a consult, 3 mri's later & a lumbar puncture I have MS.
My bloodwork shows D3 is nonexistent but ruled out lupus, ra., sjogrins, etc.
HELP! I feel very confused
I'm on steroids while waiting for copaxone, after a 10 day run I felt considerably better because I wasn't limping(other symptoms were less intense) then 3 days off & my symptoms came back with a vengeance plus more. Am I going crazy?? I could really use some advise for this newbie, pretty please? And thank you in advance!

[JerryD]

Stacy,
Sorry to have to admit you to our little slice of the world, but welcome. Glad you found us. Someone here will know all about steroid treatments. I don't. I can tell you that you need to find out which form of MS you have. You have 40 years to get used to feeling like crap. Do everything you can to stay healthy. Every day this disease finds a way to throw symptoms in your way. Good luck

[Stacey van 1]

Thanks jerry, I'm learning more everyday. I am amazed at how different things can become practically daily.

[MinnieGirl]

Hi Stacey

I am sorry about your diagnosis. Just wanted to say hi and that I understand about the ignore it and it will go away philosophy. There was always some way to rationalize what was happening to me. I haven't been diagnosed with anything, just begun the testing phase.

Hugs,
Minnie

[Stacey van 1]

hi Minnie

Thank you! I hope you get better results than myself. I guess I'm "lucky" if you will that my diagnosis came rapidly. After reading about all those that have been in limbo for years. I am learning to listen much closer to my body & for now that does help. I wish you the best!

[jbell2435]

Hi Stacy,

I am fairly new dx (10 months, 4 days but who's counting )...

I've had 2 rounds of steroids so far, 1st one was mild sx and it went away with just 3 days of iv steroids. I haven't had the optic neuroitis (sp?) thankfully, but had bad vertigo after 7 yrs of not having it and went 6 days iv steroids, then a taper and it still took another several weeks to resolve.

It is likely that you haven't recovered from this flare, thus the sx returning, but my neuro also told me that the old sx will not be 'fixed' with the steroids...it just settles down the inflammation that is currently going on.

My understanding is that with each 'flare' you could accumulate new, lasting, symptoms (damage) and that is why I chose to go on a dmd, to try to lessen that damage if possible. Hopefully you will recover soon and go back to your new normal...

This is a great place to get answers, welcome.

[MidwifeJeri]

I could have written your post!

Stacey,

I read your post in shock! I could have written it myself! In fact, I did post my story (Quite long) a few messages below your post.

I was just diagnosed on like the 8th of July? So it is not even really sinking in yet. I am on prednisone, and we will be talking about injectables mid-August. I am feeling better, but got overheated today and found myself feeling quite weak and needing to excuse myself to my room to lay down. So frustrating.

How do you define your limits? I think I am feeling fine and I get up (with a walker, still not walking well) and then halfway start to feel all jello legs and I am frustrated to have to ask for help. I wish I could know when I am going to need an assistive device and when I won't.

I am not sure if what I am asking is clear? Anyway, I wanted to reach out to you because our stories are so similar.

I live in the East Texas area.

Jeri

[Stacey van 1]

Thank you everyone for your support & answers.

Jbell, thank you! unfortunately I don't understand all the terminology yet but Im learning.

Jeri, I read your story as well & thought the same things. Another neuro has put me back on Prednisone but the symptoms just keep coming. I did overdo yesterday in the heat & am suffering today but the eye issues are making it worse for the headaches & now this afternoon my left arm is useless & numb.
As far as the using your walker, I totally understand that. I have my walker & a cane but it seems to be getting worse instead of better. I am waiting to hear if I can get help paying for the Copaxone (I don't have insurance).

I will say that prayer does help my mind be more at ease!

Im already tired of people telling me to apply for disability. I'm NOT disabled, I have MS & its just a rough time right now, I pray that my life will return to some form of "normal" soon, does anyone bug any of you on a regular basis regarding disability?

I pray for everyone to have better days & less "issues"!
Thank you again!

[ngrace73]

I, too, am newly diagnosed. This has been one heck of a year for me. On MLK, Jr. day, my mom passed away from lung cancer; the following Sunday I broke my foot good enough to require surgery to repair it. I was on a stupid knee scooter to keep weight off my foot, and I thought I had pinched a nerve from the contortions I had to be in to balance on that stupid scooter when my right arm went numb.

My GP sent me to PT, which did NOTHING for me (other than the massage three times a week on my neck/shoulder felt fabulous), so I stopped going after 13 appointments. Meh, didn't work. That was...April when I stopped going, I think? And then in mid-May, right around my 39th birthday, my right leg went numb, too. I went to the doctor again, and he set up an MRI.

My MRI came back with lesions. He sent me to a neurologist, and I got blood work and a lumbar puncture (migraine for a WEEK after that!). And lo and behold, everything pointed to MS.

My dad isn't handling my diagnosis very well. He just lost his wife of 51 1/2 years, and now his baby has an incurable disease. I've told him, "Dad, it's okay. I'm okay. It's treatable, it's manageable, I'll be fine. I promise." "Can you still work?" "Absolutely!"

I'm honestly really okay with this. I've put my diagnosis in the hands of a very capable neurologist (specializing in MS and strokes) and my Heavenly Father, where it belongs. Worrying would do me absolutely no good. Just keep looking up more and more information, and now I've found you fine people.

Stacey, my thoughts and prayers are with you as we both learn how to deal with our new diagnoses.

[Briteyes90]

Hi everyone!*

My name is Marie. I am a 30 year old mother of 4 and I was diagnosed with MS on Thursday. I have had numbness throughout the years effecting various parts of my body, but that was always attributed to the back problems I have had since I was a child.

In November of 2011 I severely sprained my right ankle rock climbing and then in February of this year my left leg decided to pretty much stop working. I could barely lift that foot off the ground. At that point I knew something was wrong, but had to wait for my insurance to kick in in April.*

I was not able to get into see a doctor until June and then she set up all the tests to be done. I was able to get in and see a neurologist before October thank goodness (that is when they had my actual appointment set up, but thanks to a cancellation I was able to get in Thursday) and that's when I found out I do in fact have MS.*

My neuro wants to start me on Tysabri depending on what my bloodwork says. Has anyone had any experience with this drug?*

The diagnosis has not truly sunk in yet, however I refuse to let MS dictate my life even though I know there will be some rough points. I am very glad to have found this site and am very comfortated to know that there are other people out there who understand what I'm going through! :-)

[marla45]

MS Confirmed Last Week

Hi,

I am new at this message board thing but wanted to reach out. My left eye went blind when I was 18. At that time a MRI was an option not a given and I had not had other symptoms. Of course, other things started happening. I had different flare ups through the years. This year at the age of 45 I finally went to the doctor due to the increasing weakness in my right side and the level of fatigue I face each day. I have lived with numbness in my feet for years, prickly feelings, etc. I guess I was a lucky one as well as far as diagnoisis. They saw the "Dawsons Finger" and it was confirmed with lessions in all parts of my brain. No spinal tap, which I was happy about. I will be having a spinal MRI in the next couple of weeks to see what shows there.

I am now trying to decide my treament options. I have always been a very active person and this has brought me down...words can not express how much. I was tested and can take the Tysabri. Or, the doctor said Copaxone or Gilenya. I will have to do some further testing for the Gilenya.

I would like to hear feedback from those that have decided to only treat flare ups and not do a long term drug treament. Sometimes I believe if I could combat the fatigue I can continue going as I have. I have always exercised and am considered healthy without my symptoms and having MS.

Thank you for listening. I want to do the right thing for me and my family. Right now it still seems very hard to concentrate and combat this head on.

[Cat Mom]

Hi all and welcome, although sorry for the reason. Stacey, those steroids give me a false sense of energy so when the IV comes out, I crash big time. I hope you have good results with COpaxone once you get started, it has been very good to me for the past 5 years. Hope you start to feel a bit better soon.
Jen

[Stacey van 1]

Ngrace, briteyes & Marla - Welcome to the club, wish you all the best. Just remember, we got this, it doesn't have us!

I hope this site helps all the rest of you as much as it has for me. Its so nice to read that others are experiencing the same issues or have experienced the craziness.

This past week has been quite a mess of issues but on a lighter note, I will be getting my Copaxone on Tuesday, so I left a message for my SS nurse & hope to get started asap (my neuro said the only thing that will help the symptoms at this point will be the shots as my body is not co operating with the steroids)

Catmom, I so hope for the good to take effect, thank you!

Prayers to you all!