I can 'feel' my brain!

[angeline59]

Hi all. I've got a dx of benign ms.

I've suffered from massive migraines for over 20 years, so I know what it feels like. But last week, I began to have an intermittent sharp pain in my left temple that shot down behind my ear. It wasn't a migraine. Now my ears are popping, like on an airplane. I don't have nasal or sinus congestion or an earache. I swear that I can 'feel' the swelling in my brain and the related pressurization problems.

Anyone ever experience this? I've called my neuro, but heard nothing back yet.

Thanks for any input!

[santana8]

How did they come to the DX of benign MS? Could the Temporal Arteritis cause brain lesions? How long have you had these symptoms that are considered MS symptoms?

~Santana~

[angeline59]

I have between 10-20 brain lesions, clear cervical ct, no banding on LP, but elevated proteins. Because I have every classic MS symptom, there's been no change on my MRI for a year, and I don't remit/relapse (symptoms are always, always there), I have the benign dx. I don't know how this latest little bit of news (TA) will affect his thinking - this just happened Thursday, and we're still waiting for the sed rate report.
Darn the long and winding road!!!!

[santana8]

I just noticed that you were previously thought to have benign MS. Is the Neuro thinking that you don't have MS at all now, or does he think you have both? Did he think you had benign MS because you had no lesions on MRI?

~Santana~

[santana8]

I am glad you got to the neuro in time to get treatment. I have read about a lot of different diseases over the last two years while searching for answers. Temporal Arteritis and Giant Cell Arteritis came up a lot in my search for causes of my sudden vision dysturbance. I have read probally almost everything imaginable related to vision loss and brain lesions. I never thought that this learned information would come in handy some day and help someone else. Well , I am glad it was you, and that you know about this condition and are being treated for it. Now, I can tell all of my family members who hound me all the time about reading about too many diseaes online, that it may have done some good afterall! lol !!!

I don't know about the relation to MS with this condition, but I am sure someone will probally know about this, maybe someone who has an MS DX and is more knowledgable about it than I am! Keep me updated on this and how  you are doing!

Hugs
~Santana~

[angeline59]

Wow - you nailed that one!  Doc is checking the sed rate and cbc. He put me on the six day pack of prednisone and vicodin. He said that if the sed rate is through the roof, we'll have to take a more aggressive tack with the steroids. I've handled this whole MS thing suprisingly well, but this has me rattled. It's my immune system attacking my arteries as foreign bodies. If it's attacked the temporal artery, it could attack any of them. My father died from an aortal aneurism, and my 11 year old stepdaughter was severely disabled by a brain aneurism. It doesn't look like this is typical with MS, so I'm wondering if I have a whole new disorder to worry about. Maybe this post will bump this - if so, anybody out there have any insight about temporal arteritis or giant cell arteritis in relation to MS?  BTW  - I'm 48.
Thanks Santana - keep up the sleuthing - it sure got me to the neuro faster than I would have without your input!!
(((hugs)))

[santana8]

Did the Neuro say it was temporal arteritis?  I thought that your symptoms of sharp pain down the temples and behind the ear sounded like what I had read about this! What test did he do to check for this?

Santana

[angeline59]

I just got back from the neuro about this - it's temporal arteritis. Yuck - steroids!  Is this common with MS?

[angeline59]

Thanks so much for the input! I'm going to check into both TN and Giant Cell Arteritis!
You are all angels - so glad we have this community!

[santana8]

I am no expert on this but I did read something similar to this discripton of symptoms in neuralgia and also you might want to google Giant Cell Arteritis( hope I spelled this right). I have seen these symptoms while reading  for this condition. Anyway it is more comon I think in people 50 and over, don't know your age, but it wouldn't hurt to look into it to be sure.

Santana

[jensequitur]

Oh yeah, and my ears would get this thumping noise in them, rather like somebody rapping on the eardrum.  Somebody told me it was the soft palate spasming, which would make sense.

[jensequitur]

I've begun to identify facial pain as being trigeminal neuralgia.  The shooting pain in the left side of your face sounds like neuralgia, especially if you have any numbness or tingling.

[humming4u]

I don't suffer from migraines, but two and 1/2 years ago i started to have what i
called face pain,it was awful,i was in my knees and my head on the floor, now i call it head pain, its not headache like in pain.I still don't have an answer after all this time,with Mris,spinals ect. somedays i feel what i call a great deal of head pressure,a weighting down sensation,i never thought of it as swelling.I think if your brain was swelling you would suffer from some severe symptoms, sight,weakness, disorinatation ect, but who am i to say.i have only been treated with pain meds, and so want to have someone help me more, so just to say,i understand your suffering and feel bad for you, i hope your nero has some answers that have alluded me,let me know if you can how things go, I will be praying for you and your doctors visit,and that you hear back soon.
                                                                                humming4u