Hughes syndrome - misdiagnosed as MS

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

Hughes syndrome - misdiagnosed as MS

Postby Amir » Wed Jan 15, 2014 3:26 pm

I wonder if any of you have read this article:
Hughes Syndrome - Misdiagnosed as MS

I was told I had MS - but the doctors were wrong

Jeremiah Johnston-Sheehan, a successful architect, was devastated when told he had multiple sclerosis.

But four years later, he discovered that he had been misdiagnosed.

In fact, he suffered from a treatable condition called Hughes syndrome. Recent research shows there could be thousands of people like him who have wrongly been told they have MS.

http://www.dailymail.co.uk/health/artic ... wrong.html
User avatar
Amir
Family Elder
 
Posts: 202
Joined: Sat Nov 21, 2009 4:00 pm
Location: London UK

Advertisement

Re: Hughes syndrome - misdiagnosed as MS

Postby Cece » Thu Jan 16, 2014 6:26 am

They say 5% of people with MS are actually misdiagnosed. That's a lot of people, considering how many people are diagnosed with MS.
I learned about Hughes Syndrome here at TiMS. chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic15537.html
Cece
Family Elder
 
Posts: 9018
Joined: Mon Jan 04, 2010 4:00 pm

Re: Hughes syndrome - misdiagnosed as MS

Postby frodo » Wed Jan 22, 2014 4:46 am

Cece wrote:They say 5% of people with MS are actually misdiagnosed. That's a lot of people, considering how many people are diagnosed with MS.
I learned about Hughes Syndrome here at TiMS. chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic15537.html


I don't know how things work in the USA, but here in Europe normally is possible to request a new doctor and a second diagnosis if we suspect that the first one was incomplete.

There are also protocols for diagnosis that are normally ignored by practitioners (they are slow and expensive), but the patient has the right to request a complete protocol.
User avatar
frodo
Family Elder
 
Posts: 616
Joined: Wed Dec 02, 2009 4:00 pm

Re: Hughes syndrome - misdiagnosed as MS

Postby NHE » Wed Jan 22, 2014 10:43 am

frodo wrote:I don't know how things work in the USA, but here in Europe normally is possible to request a new doctor and a second diagnosis if we suspect that the first one was incomplete.


Yes, getting a 2nd opinion is allowed by US insurance.
User avatar
NHE
Volunteer Moderator
 
Posts: 3355
Joined: Sat Nov 20, 2004 4:00 pm

Re: Hughes syndrome - misdiagnosed as MS

Postby cheerleader » Wed Jan 22, 2014 12:13 pm

NHE wrote:
frodo wrote:I don't know how things work in the USA, but here in Europe normally is possible to request a new doctor and a second diagnosis if we suspect that the first one was incomplete.

Yes, getting a 2nd opinion is allowed by US insurance.


That said, we had to pay for Jeff's APS (anti-phospholipid antibody/Hughes syndrome) test in California---because his primary care doctor did not believe it was necessary. It was worth it to us to pay out of pocket for his IGENEX Lyme testing, APS blood test, to rule our differential diagnoses.
He was negative for both.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5042
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Re: Hughes syndrome - misdiagnosed as MS

Postby 1eye » Wed Jan 22, 2014 6:24 pm

cheerleader wrote:
NHE wrote:
frodo wrote:I don't know how things work in the USA, but here in Europe normally is possible to request a new doctor and a second diagnosis if we suspect that the first one was incomplete.

Yes, getting a 2nd opinion is allowed by US insurance.


That said, we had to pay for Jeff's APS (anti-phospholipid antibody/Hughes syndrome) test in California---because his primary care doctor did not believe it was necessary. It was worth it to us to pay out of pocket for his IGENEX Lyme testing, APS blood test, to rule our differential diagnoses.
He was negative for both.
cheer


If you don't mind my asking, could you give us a ballpark estimate of the cost of that? I recently found a tick in my nose. I still have the little beggar.

BTW second opinions around these parts are a joke. Your first is your only diagnosis: "MS" Simple to arrange over the telephone.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 2920
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Re: Hughes syndrome - misdiagnosed as MS

Postby DrDiana » Mon Feb 03, 2014 8:02 pm

Hi all, Although not on the forum much, please know that I am working like crazy behind the scenes! I popped on for one reason, but then saw this post, so I digress for a moment.

When studying the fundus of patients' eyes, some folks sent me photos (the best were electronic), but one set, even though the images were lousy, screamed "Hughes Syndrome"! This is an appearance that once you see (as an eye doctor), you never forget. The vessels turn a pretty salmon, pink color. I questioned the patient, and indeed, she had a STRONG history of thrombosis.

So, interestingly, a good look at your fundus (or even a cursory look by a GOOD eye doctor -- ha) is a decent diagnostic tool. I would like to see everyone diagnosed long before it shows up in the eyes, though!

OK, enough with the 'fun facts'...
;)
Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
User avatar
DrDiana
Family Elder
 
Posts: 176
Joined: Fri Dec 31, 2010 4:00 pm
Location: Texas

Re: Hughes syndrome - misdiagnosed as MS

Postby Cece » Mon Feb 03, 2014 11:14 pm

DrDiana wrote:When studying the fundus of patients' eyes, some folks sent me photos (the best were electronic), but one set, even though the images were lousy, screamed "Hughes Syndrome"! This is an appearance that once you see (as an eye doctor), you never forget. The vessels turn a pretty salmon, pink color. I questioned the patient, and indeed, she had a STRONG history of thrombosis.

So this is a patient who, with proper treatment for Hughes, gets to escape the symptoms and the MS diagnosis. Amazing.
Cece
Family Elder
 
Posts: 9018
Joined: Mon Jan 04, 2010 4:00 pm

Re: Hughes syndrome - misdiagnosed as MS

Postby DrDiana » Tue Feb 04, 2014 8:15 am

Cece wrote:
DrDiana wrote:When studying the fundus of patients' eyes, some folks sent me photos (the best were electronic), but one set, even though the images were lousy, screamed "Hughes Syndrome"! This is an appearance that once you see (as an eye doctor), you never forget. The vessels turn a pretty salmon, pink color. I questioned the patient, and indeed, she had a STRONG history of thrombosis.

So this is a patient who, with proper treatment for Hughes, gets to escape the symptoms and the MS diagnosis. Amazing.


Hi Cece, Just to clarify, this patient did not develop M.S., true, but she had a connective tissue disorder and suffered numerous strokes, heart attack, etc. She only received testing (amazingly -- even with that history?!) after I saw Hughes Syndrome. We will never know if she would have developed M.S. had she not been treated at that point. Point (I guess numerous points!) include - eye exams can and should be part of our care (with a good doctor!) - Hughes is found in connective tissue disorders (in addition to M.S.), and I'd throw in that we should all be proactive in reporting (and treating, IMHO) signs/symptoms of thrombosis, Hughes, etc.

Personally, I did not want to wait for a massive stroke to "prove my point" (that we are prone to thrombosis). I went on a mild blood thinner years ago when I suffered cognitive decline. My geneticist called in the Rx for me, but I remember her saying, "What the H E Double L do you want a blood thinner for?!" ha. Overnight and dramatic response. I'm so glad I didn't wait for the OFFICIAL diagnosis of Hughes, DIC, stroke, etc... I am studying a new marker that may give us a "heads up" in advance, so we can treat this EARLY. I truly believed it saved my life, but obviously, we don't want to take blood thinners for no reason, and instead, experience bleeds. I'm on a mission!

Take home message: be sure you know the symptoms/signs of even microthrombosis, and never underestimate the power of a good eye doctor in your systemic care. ;)
Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
User avatar
DrDiana
Family Elder
 
Posts: 176
Joined: Fri Dec 31, 2010 4:00 pm
Location: Texas


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service