Found out Yesterday

[RC314]

Hi, my name is RC, 43 yrs. old and went numb from my waist down on Jan. 27. Thought I pinched a nerve working out or something. I went twice to the chiropractor, once to the accupuncturist and finally to my physician, who sent me to the ER. MRI's on my spine Monday revealed scarring and yesterday the one on my brain revealed it too and I was told the news. I just finished 3 days of steroid infusions - when will I feel better? I know nothing about this disease yet and am kind of freaking out. I have another Dr. appt. on Tuesday and I was wondering if anyone could tell me about how long it takes for the steroids to work?

[Seasha]

Hi RC and welcome! Just found out yesterday? Well, sorry that's you're here, but you have come to the right place and glad you found us!

I only had steroids once years ago- IV for 5 days when I had optic neuritis (this was what dx me) I didn't think it helped my ON because it took about 6-8 weeks to get some semblance of eyesight back, but who knows really? Maybe it shortened the time, maybe not.

I have read here of others who had great results from the steroids and hopefully they can share their comments. Try not to get discouraged or freaked- OK? The stress alone plays tricks on our bodies.

Come back often and let us know how you're doing. Hang in there~ and again, welcome!!

[22cyclist]

Welcome to MSWorld. Sorry you were recently diagnosed. It can take a while for the steroids to do their job. Sometimes up to two weeks. You also need to know that sometimes all of your symptoms will not remit. Some will stay with you. Give the steroids some time to work and you will know which are truly left over a result of a lesion.

Any other questions?

Lisa
Moderation Team

[MSer102]

Hi RC! The steroids work while they're in your body and the bulk of the steroid dose leaves the body within just a few days. So depending on how long ago you finished your 3 days they've probably already done their job.

Steroids is one of the things that's confusing at first. It took me a couple of years to understand what they do and don't do. Steroids don't fix anything on their own. They only suppress inflammation so the body can heal on its own. So if steroids are started early enough after symptoms start they can sometimes make a person feel better pretty quickly if the symptoms are mostly from inflammation.

But if the inflammation is very aggressive or too much time passes (doctors say 2 weeks) before the steroids are started the damage to the myelin and nerves is already done and the steroids don't help very much or don't help at all to relieve symptoms right away. Then you just have to wait until the body heals itself. That might take a few weeks, a few months or not at all. It sounds like a bit of time passed before you got your steroids so your healing might take awhile. Fortunately, early on in MS the body is still pretty good at growing myelin back and most people get some improvement over time. That's the remission part of "relapsing-remitting" MS.

So that's how long it takes for steroids to work -- they probably already have. How long it takes to feel better is something else and that's unpredictable. But for most of us it takes about 3 to 6 months and that's with or without steroids. And that's another thing that can be confusing about steroids. There's research that shows that steroids don't change the outcome of a relapse. They only help to shorten how long the relapse lasts if they're started soon enough after the start of the attack and sometimes they don't help at all. So this is where we all have to learn patience because healing takes as long as it takes.

There's waaaay too much to know about MS and you can't possibly learn it all right away. But you can learn some fundamentals and one of the best places to study up on MS is at the website of the National Multiple Sclerosis Society (www.nmss.org). It's a huge website to navigate through but the information is very good. I think it's better to study up on MS from a reliable source than to try to pick up information in little disjointed pieces in forums and chatrooms. I think its easier to put together what you find out in those places if you understand the basics first.

So start studying. Good luck and I hope you start to feel better soon.

[dalechilders51]

RC, Hi I'm Dale and wanted to welcome to this site. You got good accurate information from Lisa and MSer102. Do your best to relax and let your body heal. Your neuro will probably talk to you about starting medication at your next appointment. Take care and let us know how you are doing.

[RC314]

Thank you for the info, I will try to keep you all posted. I can't believe how awful this feels! I try to explain it to my wife and friends but I think the only one who understands is my dog, Ruby! She stays right by my side.

[suziq38]

Hi RC,
This is a lot of pain, stiffness, weakness, numbing and emotions.
Sorry you have what we have.
I am still in "Limbo" like you.
Take a deep breath, try to relax and rest.
The steroids will make you feel better, but they are not good for you long term. They can cause diabetes along with other side effects.
While you are resting and undiagnosed, try to make sure that your medical, optical, disability, life, and long term nursing care insurance are in order.

If you end up having MS, then you are prepared.
It is is not MS you are lucky and have received a "wake up" call.

You should see a neurologist and possibly an M.S. specialist.
We usually have to take blood tests, then a lumbar puncture, a full MRI (cervical, thoracic, and lumbar sections), and brain MRI to determine whether or not you have MS. The doctor runs all of these tests then decides.

I am not an insurance sales person. I know that the time to make sure you have the right insurance is before you start having a record of doctor and specialist visits.

It is your decision depending on how bad you feel.

I am waiting for one last test. It is a second brain MRI. The first one was done in September 2012, and this next one will be done in March 2013. The MS Neurologist wants to compare the two.

It is hard to be in limbo.
I don't know if my symptoms are primarily progressive MS or not. I am almost 57, so this is a late diagnosis.
My first symptoms were minimal about two years ago.
It started with numbing of my hands and feet, plus weakness and spasticity in my legs.
After many, many complaints and two rounds of PT, I had what was characterized as an exacerbation of my symptoms. An MRI was done, and a blockage was found in my upper spine.
I just had surgery as they could not prove that it was MS, and my spinal cord had the blockage with signal changes that were making me paralyzed in both legs.

I had medical, life, and disability insurance, but no LT nursing care insurance. They denied me the nursing care insurance because they looked up my medical activity for the last year.

For everyone, we have similarities and differences.

It is really a tough disease.

Good luck.

[CaroleL]

Hello and Welcome RC!

Being told you have MS is indeed a shocker. I had a roller coaster of emotions for the first few weeks. It's a totally normal reaction.

Learning more about MS and being on this forum has helped me deal with this. I didn't know anything about MS. The last month has changed lots of that and I'm feeling much better about this.

Cry when you want to, laugh when you can! Sharing your fears and feelings really helps. Gather your family around you and let them help you through this. Sometimes, just being allowed to cry while your being hugged can make all the difference.

In this forum, I've found everyone to be caring, understanding and supportive. We're all in this together!

[Whimpurr]

Hello! I was just diagnosed on Feb. 5th! I know your sense of fear and confusion too well!

I haven't been put even on any steroids yet. I guess because he is still wanting me to have an LP in the next few weeks.

[fishead]

RC,

Sorry you got this dang disease, but very glad that you were able to "find us" so quickly.

Please keep us updated, and keep your dog close. Animals seem to know how to handle this FAR better than humans.

[biochemgeek13]

Hi, my diagnosis was similiar to yours so I wanted to share. I was diagnosed yesterday as well. My brain Mri showed 25-30 lesions. Last Wed night my right foot started going numb and it quickly spread up my leg, into hip and butt. Then Monday it moved across to left pelvis, and down left leg. Within 1 week I was numb and almost paralyzed. They gave me a huge steroid dose, and I go in for the same today. I will keep you posted with any info about mine and the steroids, because I understand how hard it is to not have feeling from.the waist down, and be scared it will never return. Hang in there.

[CaroleL]

Hello and Welcome Biochem,

So sorry for your diagnosis. I hope the steroid treatments work wonders for you! Keep in touch and let us know how it goes.

Good luck!