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 Rae! I look forward to talking with others.

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! ♥

Hi Nali and welcome to NeuroTalk! I was dx at age 44 - a couple of months before my 45th birthday (I'm 49 now). I'd had it for years, though. Just never had a name to put with it.

I've never had the kind of head pain you describe. I'd mention it to my doctor so they can monitor it. Especially with your eyes being affected.

Hope to see you around the forum here. I'm glad you joined!

Thanks, Kitty!

I appreciate your input. My doc knows, but he doesn't "get it", yet. However, I'm determined to make him comprehend. MRI due in November.

Hi Nali,
A big Welcome to you. I'm so glad you found us. We are here to help and support each other, we learn new things everyday on NT.

I get head pains, in the back of my head, around ear level, and the sides of my neck, and behind the ears. It is not a headache. Even touching it hurts.

If it is windy and my hair blows, I get the pain. Lying in bed on my pillow is painful too, but not all the time, I do toss and turn.

I have had it since the last few years and my Neuro is aware of it, my yet nothing helps, sorry to say.

I know you are doubting your DX of MS, many people do too if they don't present with the classic symptoms when first dx'd.

I am blaming my problem on blocked veins in the jugulars, but that's a whole new story. CCSVI, as we call it.

Come down and join us on the main forum here, unless you did already. Many more people would see your problem and join in.

When your BP is that low, your heart rate will automatically speed up to try to bring the BP to a more normal level. That just might be what is causing your heart to race. JMO.

Nice to meet you.