Sticky Blood-Hughes Syndrome Support
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Is anyone have neurology problems, like spams,cramps, paresthesias, facial shin splints,who got huges syndrome? Which treatment ?

Are you having besides anticoagulation anothers drugs for breaking down the neurological problems? Is any test that show to the doctor we have neurogical problems besides symptoms? My doctor doesnot believe huges syndrome affects nervous system....i was on wheelchair for 2 months because i had many cramps in all my body and i was no able to walk, now after one year going to swim i feel quite better but some days i feel the paresthesias again and pains on my legs, and then disappears, my muscles doesnt work like before, i would like if there is someone with these problems and if they are having a different treatment. I am from spain and here they dont know very well our illness.

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Hi there, i m from Panama! I have ben diagnosed with Hughe for 3 years now,but I have beening complain of headheach and crambs dizzynes and tireness for doctors thougth it was depression...I have never been a depress persons but on this years after my diagnose, I broke up with 2 boyfriends and quite 3 Jobs..thinking that I was depress and i need to make changes on my life...i started getting dizzier and then i went to ER they gave my two tylens and send my home..I left the hospital and I talk to a neurologis who dispite thinking I was crazy, agree made a magnetic resonase with contrast.. and guess !! I have a vasculitis on braind and on my heart been hospitalized 4 times...went to different doctors and I was getting anti depression drugs for a physcial problema i m on Ritubximab terapy now, had my third infussion ...i feel great !!! so much better ..does anyone else have use Rytubximab?

i have faith that this year will be much better and then privious ones



I have many neurological issues. My neurologist here in Sweden thinks its due to Hughes.

I have neuropathy in my median nerve, trigeminal nerv and in my legs. I also have tinnitus, headace and vertigo. Besides Fragmin 10000 E a day. I also have Plaquenil 200 mg/day, saroten (amitriptyline) 75 mg/day and Lyrica (pregabalin) 600 mg/day.

Despite all the medication Im still in a lot of pain, every day.

Nervepain is very difficult to get rid of.

Regards Tessan


I hear a lot of Hughes patients with these symptoms, I believe they are down to Hughes.

As many others will agree as well as many in the profesion too.....I have light spasms, nerve pains that shoot through the body, all the other Hughes pains we all seem to get especially in my right side, neuralgia over left eye, numbness in face, raynauds, migraines, huge difference in colour in right hand quite often & very cold........

I get a lot of pains in the legs & find it helps by regular exercise...wether it is just a walk round block with dog, swimming, gym, shopping......anything I'm able of that day. I am in pain but I know it gets worse if I don't do it....I've proven this by not going to the gym once for 3 weeks....the result was cronic pains in both legs & extremely cold & painful arms!

I also take plaquinil.

I hope you start to improve, I know it's not easy & we are not all the same & our levels of symptoms are different also our pain threshold... x


I have Hughes and other than pregnancy loss I had been symptom free until last week. I had trigeminal neuralgia followed by a weird, painful sensation in my back and legs that made it difficult for me to walk, then I had a TIA with some aphasia, and tics. The hospital didn't even acknowledge my Hughes, they said I had conversion disorder.


Salva76, I live in the U.S. and yes I've had neurological problems/issues. I'm 57 yrs. old (young), and I've had a ruptured cerebral (brain) hemmorhage, 2 different types of strokes-1. hemmorhagic stroke (w/Aneurysm) 1974, 2. Ischemic stroke (caused by a blood clot) 2002. I do believe that there is a tie between APS & neuro. problems.


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