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heavenly
09-12-2002, 10:51 PM
http://www.femail.co.uk/pages...._id=173 (http://www.femail.co.uk/pages/standard/article.html?in_article_id=137608&in_page_id=173)

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

(Read at the link for full article..here's just how it starts out)

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.
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Sannie, I knew you'd be glad to see this news article out to bring this condition to light more. You're so good at making us all aware of this. BTW, the more I think about my family's health & how when docs asked if autoimmune disease in family, I always said no...but I was totally wrong.

My ma has severe thyroid disease(autoimmune), raynauds, arthritis, neck disc spine problems. Her health stuff came on strong after having hysterectomy due to early cervical cancer.

My grandma (ma's ma) had 8 miscarriages, arthritis, migraines, raynauds, asthma, and allergic to about everything, bones broke easy, sick most of time, very weak, and then died young of back-to-back strokes.

My dad just told me that years back he had problems with legs & arms being harder to use, and felt yucky, and doc told him blood tests showed his blood was way too thick like thick oil, and that he was put on blood thinners for little while back then. He has not taken anything since. ?Takes meds for high blood pressure since.

And about 10 yrs ago, a doc tested me for a panel of antiphosphoilipid antibodies when most of my health problems first started, and at that time several of them came out mildly positive. I've never had that panel again...but do remember seeing that more recently a anticardiolipid antibody test came out fine. Hmm. When my stuff first started I had told my heart doc back then that my symptoms would come on like a stroke, but I knew it wasn't stroke...cuz it would hit both arms & legs. On one of my diagnosis sheets my neuro sends to insurance it says TIAs, but he's never said that to me, as he changed what he thought I had many times from MS to MG to seizures, to metabolic, but docs always know it's clear as day from my medical history and tests that there are disease processes going on, I just never had a doc to overlook the WHOLE PICTURE. But, this new intern medicine doc was a true GEM! He said it looked clearly like connective tissue disease and MS. So, does make me wonder about what you said before to me Sannie about possible Hughes? Hmm.

Hubby & I are just hoping & praying the diagnosis(s) are coming soon, so we can finally put NAMES to this stuff we've been facing all these years. ?http://www.thelupussite.com/public_html/iB_html/non-cgi/emoticons/smile.gif

Careyanne
09-13-2002, 01:46 AM
Thank you so much, Heavenly for the article link. I read the whole story of this man & I wept. I know Sannie must have felt the same way when she found out she had been misdiagnosed for so many years! (Like being released from "Death Row")

I'm going to insist on being retested for the antiphospholipid & anti-cardilipin in October at my rheumy appointment. The first time I was tested was back in 1990 & my "then" rheumy said both came back "negative". But now the more I research & read, the more I'm almost certain I have Hughes.

I hope your new doc can get you some answers so you can get the proper treatment.

Keep us posted.

Hugs!

http://www.thelupussite.com/public_html/iB_html/non-cgi/emoticons/inlove.gif

Bishop
09-13-2002, 04:32 AM
I saw My Rhemy last week. I told her again that I have the anticardiolipin antibody and that I have vibrating and tingling sensations all of the time. I told her that I have pins and needles in my hands and feet alot!!Do I have the APs??She said no,I have antiphospholids but because I have not had a blood clot that I did not have Aps.That doesn't make sense to me.I really like this doctor but she said that unless there is a blood clot that they do not treat with anything other than aspirin.She was very confident when saying this!! Believe me I do not want to take a blood thinner if I don't need it.I told her that I was not trying to diagnoise myself.I just wanted to make sure. But I can't help but wonder??Thanks for the article!!! http://www.thelupussite.com/public_html/iB_html/non-cgi/emoticons/flower2.gif

heavenly
09-13-2002, 05:29 AM
Bishop, sheesh. I sure hope Sannie replies to yours...cuz she knows this stuff well. But, from just reading your post, I can't believe your doc would say NO you don't have it, when you HAVE the specific antibody that shows you have Hughes (APS), and the symptoms. Hello??? Just because you haven't had a severe CLOT that showed up causing problems...that doesn't sound right at all. ?http://www.thelupussite.com/public_html/iB_html/non-cgi/emoticons/eh.gif ?But, then she's being contradictory, cuz she's giving you one aspirin a day, so obviously she DOES believe you've got something going on there. Why does she say you're taking that, if she didn't think you have it?? ?http://www.thelupussite.com/public_html/iB_html/non-cgi/emoticons/withstupid.gif

Bring some printouts to read for her next time that shows the real truth. http://www.thelupussite.com/public_html/iB_html/non-cgi/emoticons/biggrin.gif
HUGS to ya,

Heavenly http://www.thelupussite.com/public_html/iB_html/non-cgi/emoticons/smile.gif

heavenly
09-13-2002, 05:37 AM
Careyanne,

That story sure does touch our hearts, huh? It was just posted at MS site, and knew people here would want to see that one. wow. I sure hope & pray we all get answers soon. I'm sure it's getting very close to diagnosis day now...barely anything of me isn't covered. http://www.thelupussite.com/public_html/iB_html/non-cgi/emoticons/hehe.gif

HUGS,

Heavenly http://www.thelupussite.com/public_html/iB_html/non-cgi/emoticons/smile.gif

Sannie
09-13-2002, 12:28 PM
Hi

Thanks for making this post. Please read the article if you have'nt already!

Jerimiah was at the Hughes Syndrome Awareness Week Patients Forum last Wednesday - and I met him!

His story, and mine, is in the new book 'LIVING WITH HUGHES SYNDROME' by TRIONA HOLDEN. Price ?6.99. Published by Sheldon Press.

Love
Sannie

Love
Sannie