Hi,
I was diagnosed last July 15. I cannot believe it has been a year already. I had double vision. Mid Sept. I started Rebif. However, due to a decreased white count I was only on the full dose for a month. I have been on the 22mcg dose. I have not had a relapse since last July. My white count is starting to drop on the 22mcg dose, so I am seriously considering stopping the Rebif. If I had to do it all over again, I don't think that I would have allowed the doctors to talk me into starting a DMD. Personally, I believe that not having a relapse over the last year had nothing to do with the 22mcg dose of Rebif. When I first started Rebif, I did a slower titration over 4 months and one of my doctors told me that I really needed to get on the full dose so that I would not relapse. Now that I can't take the full dose, I am told that 22.2mcg also works, too. It can be confusing. I don't want to go on Copoxone due to the IPIR reaction. I live alone in a very rural area. During the winter, it can be difficult to get out, so if I needed 911, it could be a problem. Anyway, I am interested in hearing other opinions about this. Looking forward to meeting others.

Welcome. Luv, so nice to meet you.

I hear you about the DMDs. Darned if you do and darned if you don't? You do whatever your body tells you to do.

Sorry as to why you are here, but glad you found us. Please join us.

Hi Everyone!

I wanted to connect with people who have MS because I seriously doubt my diagnosis. This looks like one of the best online communities so I had to join. I'm almost 52 years old, and I've been disabled with major neuro problems for at least 20 years, although, I have been sick for 35 years in various degrees. I was diagnosed after years of misdiagnosis. You know how that goes...

MS meds have not been kind to me, so I don't take anything, except something to help me sleep. After 20 years, my liver and my body just can't take anymore. I used to take Copaxone, steriods, and even tried chemo for a year.

So, here is the reason I need you guys: The reason I second guess this diagnosis because of head pain. I feel a deep soreness when I lay on my left side at night. Sometimes, I can't put any pressure on that side at all and if I happen to roll over on that side at night, I wake up with my left eye bulging, and my heart racing. My eye quickly goes back to normal when I stand up.

Does anyone know of another person with MS who has this kind of head pain? This is not a headache. This feels like a bruise beneath my skull with swelling and soreness that follows a bruise.

I only have two little lesions on my Brain MRI that come and go. At first, my MS neuro said they looked like hematomas, but he quickly told me it was MS. Does that make sense? If someone can convince me this head pain thing is normal with MS, I'll listen - promise.

♥ To you all, Nali

Thank you for introducing yourself!
You are SO RIGHT in that you've found the 'best' forum !

The support here is 24/7 !

You pose some VERY good questions!
More folks will be along shortly who know more than I on this issue, but I saw your post and wanted to 'welcome' you!

You've got Friends!
Rae

Welcome Nali! I too have heart racy issues when I lay down. My BP goes funny, and I do get headaches. I am currently undergoing testing to see if my MS is affecting my autonomic nervous system as well as my central nervous system. I too was dx late. I was over 40 when I finally got a correct dx. I wandered for a few years, and kept asking "are you SURE this is MS?" I have received loads of assurance, that yep, I am right in the thick of things with the other patients. *sigh*

pull up a chair, and grab your reading glasses. We would love to hear your story.

Thanks, Dejibo,

What sort of tests are they doing to evaluate your autonomic nervous system?

My BP hovers around 85/52 - I know, that is l-o-w. Ny heart only races when I put pressure on the left side of my head.

The thing is, I don't get headaches. I have head pain. Ouch, don't touch, can't put pressure on that side, head pain.

Welcome Home Nali.

Thanks, Sally! ♥

Thanks Rae! I look forward to talking with others.

Hi everyone, I am not really that new but haven't been here for a very long
time. Many reasons, mostly my life was consumed by my Mom inlaw with AD, who is now in a home. Not that she isn't still a primary focus, but now that sh isn't living with us I can at least think clearly.
It's nice to have this forum to share info and experience, something I have missed.
I was dx'd 8 years ago now, rrms going towards spms. Then had Novantrone on the three month protocol and have had stable mri's since. Previously was on rebif, copaxone, steroids. I am not on any disease modifying drugs right Now just drugs to treat all of the residual damage and symptoms.
My biggest challenges these days are bladder infections, fatigue, and muscle and nerve pain. Thanks for being here everyone, it's great to have a place to go.
Sandra