Sticky Blood-Hughes Syndrome Support
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Looking for answers

I have had migraine headaches since I was in middle school. I am now 33 years old. My migraines come with the aura. I have had migraines in the past make my tongue go numb and the whole left side of my body went numb. I have had vomiting also. I just had my recent migraine this past Saturday and it still hasn't complet`ely went away. My dad has similar migraines as me so I just pretty much diagnosed myself with them.

In 2012, I was in the middle of an aura and thought I would go to the doctor to get diagnosed for migraines. They ended up doing a CT scan to make sure nothing else was going on. Well that came back abnormal for my age. So I had a MRI done. That to came back abnormal . It stated multiple corpus callosum, periventricular, and subcortical lesions concerning for a demyelinating disorder such as MS. My PCP immediately sent me to a MS specialist. I had symptoms of MS so the MS specialist just has me get follow up MRIs each year.

My 2013 MRI impression was white matter disease, some involving the corpus callosum, unchanged. Appearance suspicious for demyelinating process. Still no symptoms of MS.

My recent mri was just taken this past Friday. It states I have greater than 20 total lesions of increased T2-weighted signal intensity in the brain, many of which are confluent. Of these lesions, approximately multiple are periventricular, multiple are juxtacortical, and none are infratentorial. None of the lesions enhance. The Impression: Mild nonspecific cerebral white matter disease without change from 8/3/12. The differential diagnosis includes premature chronic small vessel ischemic disease (especially if the patient has cardiovascular risk factors), demyelinating disease such as MS, drug abuse, vasculitis, or reactive astrocytosis (gliosis) secondary to nonspecific etiology.

I go to see the MS specialist again this Friday. I still have no MS symptoms. Someone brought my attention to Hughes syndrome so now I am trying to get some information. I have never heard of this but see that it can mimic MS. Does anyone have any opinions or useful information?

5 Replies

Hello and welcome.

Firstly I am sorry to hear of all your problems and, having had similar migraines and other issues, I sympathise with you.

Firstly, where are you from?

Secondly, please have a look at and print off the relevant information and take this to your GP/Consultant.

Best wishes.



Hello Dave,

I am in Illinois. I am definitely going to see what my doctor thinks about this. Something is causing these spots.



Hi Laina.

Yes, please do, and ask them to do the three blood tests that are set out on the Hughes Syndrome Foundation website.



Hi Laina

Please also have a look at



It is thought that around I in 5 have APS when they have been told they have MS of course you can have both. You should at lease have the three antibody tests for the condition but know that you can be seronegative too. Neurologists are not the best with APS we have found so if your current Dr is one, you may find that finding an APS specialist would prove more helpful. Often Prof Hughes will put patients on a trial of Anticoagulation like LMW Heparin and see if symptoms improve, if they do you have your dx.

Gods Luck and please update us.


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