Misdiagnosis of MS??

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Optic neuritis caused by sphenoidal sinusitis

Postby babiezuique » Sun Oct 03, 2010 11:03 am

I just discovered.... in all the mri i did in the last 11 years...that i had a spheniodal sinusitis that leaded to my optic neuritis. I know now that my optic neuritis is caused by a chonic spenoidal sinusits that nobody linked to all the problems i have had for the past 11 years.

Sphenoidal sinusitis when it is chronic.... can cause blindness, neurological lesions.... and so on!

I'M going to be operated on the 22 of november to open my sphenoidal sinus that is just beside the optic nerve that have beem inflamed 11 years ago...

Every case has his own history.... I'm actually doing Dr house with myself.
proud of me...

not happy with the way Doctors do their job!
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Postby Bethr » Sun Oct 03, 2010 12:21 pm

I'm so pleased you found out what was really wrong, and even better that you can do something about it. I'm proud of you too!
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Postby James78 » Sun Oct 03, 2010 2:10 pm

very interesting thread this for me, I am in no mans land at the moment

GP said MS, but a neuro (specialising in MS) took one look at me, dd some cursory tests and said no way I had it, we then had MRIs of neck, spine and brain so he could prove it and all came back clear

How the heck he can be so sure even with clear MRIs is beyond me, Ive had 2 'attacks', the second caused slight optic neuritis, vertigo, dizziness, tingly gums/hands/feet, cogfog, tinnitus, fatigue and mental disconnection and couldnt walk more than 50 meters....feeling more like me now but im amazed how sure he can be what it isnt....it seems to be such a difficult disease to pin down....

Hughes syndrome is something definately worth getting tested for, its something my mother had diagnosed after seeing Dr Hughes himself and perhaps without him she'd be treating herself in totally the wrong way if MS diagnosis had been given, she had very MS like issues. Also, I have an Aunt with lupus and my neuro reckons that lupus can mimic MS identically....

However both Hughes and Lupus have come back clear for me, so I am going to have to live with the unknown for now. I have heard snce though that there is a new very specific test for Hughes which is better at identifiyng any 'blood stickyness' (the standard test being only 90% affective for picking up the condition). I will have that next then and probably have another go at looking for lupus too at the same time. I'm aware though that lupus blood tests can come back OK and MRIs can come back clear and you can still have either MS/ lupus or both.....TIme will tell I guess....If I stay unknown and CCSVI becomes even more accepted than it already is, then I will definately get tested for that, with or without a diagnosis
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Re: Optic neuritis caused by sphenoidal sinusitis

Postby costumenastional » Mon Oct 04, 2010 1:30 am

babiezuique wrote:I just discovered.... in all the mri i did in the last 11 years...that i had a spheniodal sinusitis that leaded to my optic neuritis. I know now that my optic neuritis is caused by a chonic spenoidal sinusits that nobody linked to all the problems i have had for the past 11 years.


Can i ask how you know that sinusitis actually caused your optic neuritis? I am only asking because i have sinus problems that go way back myself.
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Postby babiezuique » Fri Oct 08, 2010 6:24 am

When you look for symtoms and the consequences of no treatment for a sphenoidal sinusitis....Med paper talk about going blind because of this... attack of the brain tissus.... and it can lead to Death....if not treated
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Postby 1eye » Fri Oct 08, 2010 8:01 am

James78 wrote:very interesting thread this for me, I am in no mans land at the moment


If you are completely in remission thank your stars. I know what you feel like. When I had my first bout I could not convince the GP or anyone she sent me to that there was a problem. It was a hot summer. I only found out years later about heat-sensitivity. But all the doctors had air-conditioned offices, and after "cooling my heels" in the waiting rooms I never could show the doctors what was wrong. Until I described (and demonstrated) a funny intention tremor that made my hand go in circles. But I did not get DX until 15 years and many many blood tests later, after they had invented MRI.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: Misdiagnosis of MS??

Postby Sunnee » Wed Nov 09, 2011 9:31 pm

I dispute the whole diagnostic procedure. I was diagnosed by positive MRI, but I know 100% I do NOT have ms. I have no doubt, no doubt at all.

They have presumed that the French doctor was right with his theory back in the 1800s. yeah! right, I think not

Just my opinion though, as a at the time was his. one mans opinion doesnt make it a fact in my eyes




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Re: Misdiagnosis of MS??

Postby euphoniaa » Thu Nov 10, 2011 3:38 am

Just an FYI to those who may be ready to post a thoughtful reply to an individual who posted early in the thread, this is a thread bumped from October 2010, over a year ago, so the information and questions asked are no longer current.

Just a heads up. :smile:
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Misdiagnosis of MS??

Postby Sunnee » Thu Nov 10, 2011 4:15 am

You are right I should have specified when re entering it into the arena.

thanx

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Re: Misdiagnosis of MS??

Postby MrSuccess » Fri Nov 11, 2011 3:22 pm

..... just a thought on misdiagnosis ...... the MRI is starting to look like a two edged sword.... Neurologist's are using brain mri's as certain proof of MS.Here come the drugs...

so my question/ observation is this ....... IF ..... they [ Neuro's ] were NOT allowed to
use mri evidence when labeling a person as having MS ...... and had to use SYMPTOMS only as evidence/proof .......... how do they plan on getting an accurate diagnosis ?

There are NO tests to prove MS.

On the NMSS website .... they clearly explain that brain lesions are found [ on autopsy] in people who have never reported any "MS- like" problems in their lives.

I challenge any and all Neurologist's to go " Old School " ..... and risk their reputations on their so-called expert ability to diagnos MS ..... WITHOUT...... an MRI image , as help.

I'm really stumped as to HOW the Neurologists get away with this with Insurance providers.



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Re: Misdiagnosis of MS??

Postby blossom » Sat Nov 12, 2011 2:51 pm

i have always said we have symptoms they decided to name ms. putting us all in one pot. a pot that they could sell a ton of drugs to "if you would take them". i never did and was treated more rotten because of that.

my symptoms are also the same as stenosis of the cervical spine, cervical bone spurs pressing on the spinal cord and bad vertabraes. yet because i got slapped with the ms diag. i can not "yet" get this resolved. i won't get into it here again but shame on all the dr.'s that quit listening to what the patient has to say and also quit looking for individual diag. we are all individuals that just happen to have similiar symptoms.

it's like if you are branded with this title ms--nothing else can be causeing anything. it's all the ms.

"yet no one in the med. field can say 100 per cent what causes it or there is no 100 per cent test." and none of the current treatments work the same for everyone if they work at all."

yes, definitely misdiagnoses!!!!
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Re: Misdiagnosis of MS??

Postby Cece » Sat Nov 12, 2011 5:38 pm

MS is a disease of exclusion. It is perfectly likely that there is more than one disorder lumped together under the umbrella MS, as well as those who have been misdiagnosed.
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Re: Misdiagnosis of MS??

Postby blossom » Sun Nov 13, 2011 9:56 am

yes, ms should be a disease of exclusion. the big problem is that they don't always exclude all the possibilities. for instance, there are some i've talked to here that were never even tested for lymes disease and many are tested by a method that is not the best. or hugh's disease, a person shouldn't have to ask for that test they should know. and my personal struggle-spinal problems.

it's like they see a lesion and they stop-they have this mind set that it just gotta be ms. end of story and live with it.
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Re: Misdiagnosis of MS??

Postby jimmylegs » Sun Nov 13, 2011 10:34 am

when i had my dx attack, the neuros at my hospital did not buy my tale of pre-existing b12 deficiency, due to a) my frantic supplementation which had my levels up to 300 at the time, and b) a glitch with my family doctor's computer system, which did not plot my prior deficient result on my levels graph, because it was text (ie 'less than 75') not a number, and this glitch i did not find out about until way after getting the msdx.
once you've got that ms label, they're done! even though b12 is a main differential to consider when diagnosing ms.
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