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.

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

Hi Sandra! Glad you found this site. It is nice to have a place to go and know that everyone understands what you're talking about.

So sorry to hear about your MIL. We have several here who are going through the same thing right now. My Mom passed away in 2005 but we went through AD with her......it's a terrible disease.

Hope to see you around the forum some more.

[QUOTE=Nali;668871]

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.

Nali, I have MS & Trigeminal Neuralgia. Look it up and see if it fits, then maybe Dr. will listen & treat you for it.

Good Luck!
B-

welcome to NeuroTalk, B-

We are here to support each other through the bad and the good, so just join right in anywhere.

Having a loving Family, with this rotton disease, is wonderful. Sorry for the TN.

Again Welcome.

Hello LuvSunflowers and to NeuroTalk.

Nice to see you here

Have you enabled the PM feature?

Hi Snoopy,
Nice to see you here too!! I can't seem to figure out how to enable the PM feature.