Looking for research on Chorea and AP... - Hughes Syndrome -...

Hughes Syndrome - APS Support
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Looking for research on Chorea and APS Please

beccafullcircle
beccafullcircle

Hello everyone, thank you for the ongoing support all of you provide for us all here on the forum. Just got back from the OHSU in Portland Oregon. The specialists have tossed Chorea onto the table with the APS diagnosis. Searching for information so I may learn how to navigate properly through this leg of the journey and would love to know more as I no nothing at this point besides what it is doing to my body w/the involuntary painful body jerks, cognition barriers, speech barriers, etc. T

Thanks ahead of time for all your help.

Becca

10 Replies
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Hi, I’m interested to watch this post. I believe I had this a few years ago during a serious period of time for me symptom wise. Was diagnosed as myoclonus & treated with anti epilepsy drugs....no effect at all. I always protested & meds gradually reduced/stopped...no change. 5 years on it’s all buy stopped. I get stiff legs pretty much every morning although compared to the original time of unpredictable sudden spasms/jolts its a relief. I’ve found very few articles on it unfortunately...strange.

HollyHeski
HollyHeskiAdministrator

Hi, found this paper -

ncbi.nlm.nih.gov/m/pubmed/2...

lloydyuk
lloydyuk
in reply to HollyHeski

Interesting paper thanks. Now I’m keen to know my blood marker levels during this period. It’s my understanding, whilst there was admittedly loads going on at the time (CAPS) the decision was made to put me in an induced coma to rest my body from the severe spasms. Again I’ve been told by my good friend that just prior they physically struggled with medical staff to stop me lurching off the bed as they couldn’t restrain me. I’m not that strong! Frightening time.

MaryF
MaryFAdministrator

Hi, I replied to your message and sent you another paper. MaryF

lloydyuk
lloydyuk
in reply to MaryF

Hi, Presumably your reply was by direct message to Becca as no sign on here?

MaryF
MaryFAdministrator
in reply to lloydyuk

Yes, just alerting her to the fact I had replied to her private message. MaryF

Ask Dr DeLoughery about a trial on fragmin. I think that will clear it up, it did mine. Just about the time I’d fall asleep the chorea would hit me. I would actually do an involuntary sit up at lightning speed or legs would kick out. It’s rare now since fragmin. I think it has to do with lack of blood flow... I’m guessing though.

Hi Becca,

So sorry to hear what they have now found on you "Chorea". I read what prof Hughes has written about it and among other things he has said that "anticoagulation" is vital so I hope that you have a steady INR (I suppose you use Warfarin, forgotten about that) and an INR that is high enough to manage with your symptoms.

Please let us hear how it goes for you now and give my love to your "Norwegian prince".

Kerstin

Hi Kerstin, sorry to not respond to you from a few months back. Hope you are well my friend. The symptoms of the involuntary movement with the sharp/piercing jolt of pain has not stopped. It's making life a little difficult. However I am with hope and have great peace...as you and I know where our help comes from :)

I am painting almost daily, it helps sooth the barriers and it gives me time to slip away into a creative positive space with the Lord.

How are you doing Kerstin? All ok over there? Fall is in place here and all the leaves are changing...its beautiful.

Hi Becca, So nice to hear from you and that you are painting. Oil or aquarelle? My pencils are not dancing anymore...... pain in fingers and I will probably try aquarelle soon which is easier.

So I am still here almost daily. I love this site.

Do you selftest and is there differences between fingerprick and vein-values? Some of your symptoms could be from too low INR of course. You say you have a stable INR. You can only trust the vein-value.

I hope someone will answer your last question to help you.

Here we have had summer on October 15. Never been so warm so late in the year before at some places in the north of Sweden also. The colours of the leaves and the sun is quite fantastic!!

Take care and give my love to the dogs and your norwegian prince!

Kerstin

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