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Went to the rheumotologist.....

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Posted 4/5/2007 6:43 PM (GMT 0)
Ok and now I am totally scared! I was diagnosed over a year ago with MS and now it looks like I might have something else in addition to MS and I am confused! They think I have antiphospholipid Syndrome (or Hughes disease) b/c I had a positive cardiolipin and I have livedoid vasculitis (a weird vein pattern on my legs) . So now they are telling me that I can't have a baby right now and I might never have another one. Or that anytime I could have a clot that kills me if this is positive. I also read that this disease is sometimes misdiagnosed as MS. I wonder if I have been misdiagnosed? I have several lesions so i don't think I have. I have every MS symptom and several docs have said I have it. I'm terrified to get my follow up blood test to figure out if I have this, I am so tired of being SICK and afraid of dying. I feel like I just don't thik i can handle another thing! I was really feeling better and coming to terms with my MS and now I am feeling the strong pull of depression again. I took my daughter to her play group last week and had to leave early b/c I was so upset that so many of the other moms are pregnant and running around and having fun while I am constantly feeling the shadow of illness.... Somebody please tell me this will get better and I will live to see my daughter grow up.....
Posted 4/5/2007 7:20 PM (GMT 0)

Actually, if the rheumatologist is correct (and given your past diagnosis of MS, you might want to get a second opinion, or have him repeat the tests, just to be sure)..

if this diagnosis is correct, this is somewhat better news than you having MS! Hughes Disease is treatable. Not curable, but treatable, and manageable, and not as debilitating as MS.

Here is a website that describes what it is, and how to treat it:

http://www.netdoctor.co.uk/diseases/facts/antiphospholipid.htm

While it is true it would be risky for you to have more children, and you'd have to watch for other blood circulation issues, it sounds like once you start getting proper treatment, you'll feel much better, and do much better overall.

Given how rare and unusual Hughes Disease is -- I'm betting that you've been misdiagnosed as having MS, and in fact your symptoms are tied to the Hughes Disease.  But you should definitely talk with your rheumatologist about this, and show him the MRI's where lesions appeared, and see what he thinks.

I hope you'll get proper treatment, and feel better soon.

Posted 4/5/2007 11:37 PM (GMT 0)
Hey Theresa

Wow...i'm so sorry! Sounds like the docs may be on to something tho and, as Uppity said, that can be a good thing. U don't want to be misdx'd and taking the meds for no reason...when u could be getting proper treatment and feeling better. Try to relax a bit and take this one step at a time. I know u'r anxious and scared, but u'll get thru this and u'll be ok in the end. Hang on friend.
Posted 4/6/2007 1:41 AM (GMT 0)

Thank you so much for the linkand the replies. I am sooooo confused. How can I have lesions and not MS? The rheumotologist had pics of my lesions. He kept talking about the lesion on my C3 cervical spine. He was surprised I was still walking with how large it was. So I guess my basic question is cna you have these demylenation lesions and not have MS?

Thank you in advance for all your knowledge.... I really helps to have someone to ask these questions too. No one I know knows anything about MS....

Posted 4/6/2007 10:40 AM (GMT 0)
There are other conditions which could be guilty for the lesions- not just MS. Things like Multiphasic disseminated encephalomyelitis, Transverse myelitis, Lyme Disease, ... you can google "lesions" and find some interesting results. :)

Good luck to you!
Posted 4/6/2007 11:27 AM (GMT 0)

As Sylvie said, lesions -- scars -- abnormalities -- can occur on MRI's for all sorts of reasons, not just MS. She listed several diseases. Some of the more common reasons for lesions are migraine headaches, and in your spine, what I call "mechanical" problems -- bulging discs, other injuries.

And we've all seen where one doctor sees "lesion", another doctor doesn't see anything at all, or what he sees he describes as something else, and not a lesion.

Which is why you need to go back to your rheumatologist with those MRI's in hand (or have your neuro send them to him), and ask him to examine the MRI's, and explain to you what he thinks is going on.

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