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Old 01-12-2009, 02:41 AM #1
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Hi Laura,
Where on your head do you feel the head pain? Just curious. I get it on the very top at times, or sometimes in the back of the middle of my head, where the two low skull bones are (and glands under them). It may include the back of my neck (brainstem area) in the mix.

It worsens with a relapse and steroids help after a month. Clonazepam daily helps when it is not too bad.

I always have sinus headaches when they are bothered by infection and twice a year a Migraine that puts me to bed in the dark.

There are so many kinds. Which do you have if I might ask?
Lady

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Old 01-12-2009, 03:13 AM #2
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Aren't there newer studies/reviews that say headaches are a part of MS for some people? I've always struggled with headaches and migraines. About 9 yrs ago, a neuro sent me for an MRI of my brain and it showed an "UBO" - unidentified bright object. He dx me with "pseudo-tumor" and told me to lose weight and he gave me meds. No idea if at all related or if onset of MS. Don't remember the name of neuro or where I had the MRI! Bummer, wish I could get my hands on it, just to see if anything else was actually there (well, besides for my brain that is).

~Keri
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Old 01-12-2009, 06:38 AM #3
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There's something about the nature of MS that makes the undiagnosed wonder if they don't really have MS, and the diagnosed wonder if what if they DON'T have MS but some other "mystery diagnosis" disease that only 1% of doctors have ever heard of.

It's all so confusing. I can't help but think of the people who will hear about this and start another round of second-guessing. And how many friends and relatives will call their MSrs and say, "I just read this and you might not have MS!"
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Old 01-20-2009, 04:42 PM #4
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Quote:
Originally Posted by Blessings2You View Post
There's something about the nature of MS that makes the undiagnosed wonder if they don't really have MS, and the diagnosed wonder if what if they DON'T have MS but some other "mystery diagnosis" disease that only 1% of doctors have ever heard of.

It's all so confusing. I can't help but think of the people who will hear about this and start another round of second-guessing. And how many friends and relatives will call their MSrs and say, "I just read this and you might not have MS!"
I agree although as a diagnosed person while I wish I didn't have it there wasn't and still isn't any denying it imo.

My biggest concern related to the article is that those who have not accepted their diagnosis will have this to further muddy the waters.
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Old 01-13-2009, 12:06 AM #5
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Quote:
Originally Posted by Lady View Post
Hi Laura,
Where on your head do you feel the head pain? Just curious. I get it on the very top at times, or sometimes in the back of the middle of my head, where the two low skull bones are (and glands under them). It may include the back of my neck (brainstem area) in the mix.

It worsens with a relapse and steroids help after a month. Clonazepam daily helps when it is not too bad.

I always have sinus headaches when they are bothered by infection and twice a year a Migraine that puts me to bed in the dark.

There are so many kinds. Which do you have if I might ask?
Lady

My head pain most of the time, extends from the top of my skull on the left side, down to my temple (left side) and under my left eye. It can also involve my top row of teeth on the left. I also get similar pain on the right, just not as frequently and it seems to center around the ear and outwards into the temple/eye area.

The left side is definitely the most problematic. I almost never have pain in my forehead. I had a 'true' headache recently and was almost surprised to feel what a true headache feels like... this is quite different.

My dentist diagnosed Trigeminal Neuralgia and I'm certain I had attacks of the 'classic' type years back. Now what I think I'm dealing with (and my neuro agrees) is Atypical Trigeminal Neuralgia.

I'm affected by this type of head pain almost daily. To differing degrees. Since I quit smoking in September, I've been in pain with the head. But at the end of the day, I quit smoking, so I can suck up the head pains and eventually my body will untangle itself
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2004 to present - Trigeminal Neuralgia
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March 2008 - Multiple Sclerosis DX
05/2008 - Relapse
05/2008 to 02/2009 - Copaxone
10/2011 - Relapse - Optic Neuritis developed
9/2012 - Relapse - Balance issues 1 sided
8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax)
April 7/14 - Raynaud's Syndrome DX
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