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Hughe's syndrome or MS?
by Suzie9, May 03, 2008 10:17AM
Has anyone here heard of Hughe's Syndrome?I'm sure lot's of you have but i only just did today and was facinated.
It is a disease often called 'sticky blood'and has many similaritie's to MS and some people who have been priviously diagnosed with MS,even those with severe disability,have been later found to have Hughe's Syndrome which is easily treated with blood thinning drug's such as Waferin.[Though it can be dangerous it left untreated leading to Stroke's and Heart attack].
The symptom's include DTV,Headaches or Migraine [or history of],Ache's,Pains and Cramp,Stroke/heart attack,Memory loss,Dry eye's,Miscarriage[often multiple],Blotchy skin and low platelet count.Symptom's in HS that are similar to MS are Pin's and Needles,Vertigo,Eye problem's Ataxia,loss of sensation,Muscle weakness,Movement disorder,Bladder incontinence,Speech difficultie's,Fatigue and depression.
Like with MS not all Symptom's need to be present but a simple blood test for hughe's can rule it out.
Interestingly it can also have similar MRI result's as MS.
There is a danger of false hope with thing's like this but it's worth checking out.In London St Thomas' Hospital they have been doing a lot of research on Hughe's Syndrome[Antiphespholipid Syndrome], and it seem's to only have been widely known in the last 20 years.
I am going to mention it to my Neurologist and hope she doesn't look at me like i'm an Alien!
Look it up on the net,It is interesting reading if nothing else.
Suzie
It is a disease often called 'sticky blood'and has many similaritie's to MS and some people who have been priviously diagnosed with MS,even those with severe disability,have been later found to have Hughe's Syndrome which is easily treated with blood thinning drug's such as Waferin.[Though it can be dangerous it left untreated leading to Stroke's and Heart attack].
The symptom's include DTV,Headaches or Migraine [or history of],Ache's,Pains and Cramp,Stroke/heart attack,Memory loss,Dry eye's,Miscarriage[often multiple],Blotchy skin and low platelet count.Symptom's in HS that are similar to MS are Pin's and Needles,Vertigo,Eye problem's Ataxia,loss of sensation,Muscle weakness,Movement disorder,Bladder incontinence,Speech difficultie's,Fatigue and depression.
Like with MS not all Symptom's need to be present but a simple blood test for hughe's can rule it out.
Interestingly it can also have similar MRI result's as MS.
There is a danger of false hope with thing's like this but it's worth checking out.In London St Thomas' Hospital they have been doing a lot of research on Hughe's Syndrome[Antiphespholipid Syndrome], and it seem's to only have been widely known in the last 20 years.
I am going to mention it to my Neurologist and hope she doesn't look at me like i'm an Alien!
Look it up on the net,It is interesting reading if nothing else.
Suzie
Post Comment
I had a rheumatologist test me for it. I tested negative, but it is something to think about.
Hughes Syndrome is an autoimmune disease and the symptoms of many autoimmune diseases are mimics of MS. You might have better luck if you ask your neuro about a possibility of autoimmune diseases in general, and if you really want to pursue that you should be seen by a rheumetologist and preferably one who specializes in immunology.
I have been diagnosed with a particular "type" of autoimmune disease, but I am in the process of the immunologist trying to figure out which one it might be. There are hundreds of autoimmune diseases and unfortunately the medical community in general seems to lack the understanding of them and a diagnosis is not an easy thing to find.
The good news is, that in general the treatments are basically the same if it is determined an autoimmune disease is present.
Think of in in terms of the flu. If you have the flu you know it. It doesn't really matter which strain it is, it is still the flu.
Good luck to you in getting this figured out. It doesn't seem like it should be this hard, does it?
Wanna :o)
I don't think we've actually spoken yet. Hello! And belated welcome! I've read some of your posts.
Yes, one of our members, I can't remember whom, actually got a diagnosis of Hughes Syndrome. It was long ago, and she doesn't post any longer. We all had her pegged for MS. Her symptoms seemed to fit. Then, out of the blue, her very sharp doctor tested her for Hughes Syndrome. It must have been due to her medical history.
If your history fits, by all means, ask your doc to test you. It's a simple blood test, and your doctor really should know about it.
I hope you're feeling well. Good luck and keep us posted!
Zilla*
Cleo
Does anyone know what the blood test is called and is it something that is routinely check for when ruling out other diseases in MS diagnosis?
I would like to find out if I was tested for this but I'm not sure what to look for in my lab report.
Thanks.
Sara
Thanks for bringing this up! We have discussed it many times, but all the mimics need to be mentioned over and over. Yes, we have had a couple members with Hughes Syndrome; the one I specifically remember is Frann (who often lurks - "Hi! Frann!")
As part of the work up for MS, everybody should be tested for Hughes Syndrome and its variants. A couple of blood tests will pick up most of them: Antiphopholipid antibody, Lupus Anticoagulant (has nothing to do with the disease of Lupus), antiCardiolipin antibody are the most common, but there are several more if the suspicion is high.
The MRI of the brain can look just like MS, though the pattern tends to be defferent when there are a lot of lesions. I need to double check, but I believe it does NOT cause spinal lesions.
We need to have this conversation frequently. Thank you!
Quix
Nice to 'meet' you all.
Suzie.
Suzie.
Suzie.
Good luck
Let me know how things go with you.
Suzie.x
I'm up searching the internet right now for other treatment options. She has been having several tias and (mini) seizures where she will just "zone out." This is happening every few days, and I don't remember when she actually felt well for more than a couple days at a time.
In addition to the frequent "zone out" periods, she is constantly tired, always has severe headaches or migraines, experience numbness in her face, and she has lost big chunks of her memory. We had 6 lost pregnancies (miscarriage and early birth) but finally had a son that delivered 7 weeks early (he is now 6 and doing wonderful). She used to have a very sharp mind. She just prays that she will feel well again someday.
I'm actually trying to find out if there is any benefit to trying to get her into MAYO or some other clinic. I'm really at a loss, I'm just watching her slowly deteriorate.
Does anybody have any advice?