Involuntary movement-Chorea - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Involuntary movement-Chorea

beccafullcircle
beccafullcircle

Good morning everyone,

Last I wrote on here I was experiencing the same concerns that I continue to work through. I have been back at Oregon Health and Science in the Rheumatology Department and the Parkinson/Involuntary Movement department as well as now scheduled for Fibro clinic. The fatigue and overall frustration is piling up on me again. They did an MRI from a closer hospital, the specialists at OHSU read the report and said there was two "white spots" on the frontal part of my brain, lower temporal lobe. All the rest of my brain and blood flow/veins all the stuff they consider looks healthy and strong. Therefore they have dismissed this and said unless my symptoms change or get worse there is nothing of concern here.

They have completely ruled out Lupus, they took if completely off my medical chart saying it was a wrong diagnosis. My blood test for APS is stable thanks to Warfarin. All other blood tests look amazing as well. Praise God for this, yet there are clearly lingering concerns that I can not shake. Literally "shake" is the word.

I have abrupt involuntary movements that send often intense shock waves like a hot iron poked through and then my body, limbs, neck, back, feet, hands, arms jerk and flay out without any kind of control or warning. The pain overwhelms me sometimes, it started attacking my neck area the last month. My neck and shoulder collide when it happens and I have no way of stopping it. I was at the theater with my mother in law watching a play and my legs acted up and I had to leave due to the kicking out motion and pain into the isle seat. The rheumatologist said that I am clearly having a neurological barrier, he said my "nervous system is sending out amplified and wrong messages to the brain". He said they have cleared out any major diseases that would be an alarm for this type of barrier yet they know it is happening and real so they put me at the Fibromyalgia clinic now and the involuntary movement clinic at the OHSU. They have spoken of Chorrea but I do not see how the chorea is explained to be this painful? They said they can not due much but would recommend pain medication due to the chronic wide spread pain. I do not take pain meds and do not plan on starting either. The other symptoms effect my cognition also. The fatigue and fog, speech delays and memory/cognition barriers are weighing on me quite a bit. I feel unable to function correctly out in public most often. I second guess myself constantly now. Its been a heavy road yet I am hopeful and completely understand there are a multitude of other wayyyyyyyyy wayyyyy more horrid things that are out there in the world. I am thrilled to have a loving husband and medical care and to have a day to live out to its fullest no matter if its a day I need to stay more still...at least I have a place to stay still in . My point is I am far from complaining I am simply reaching out hoping maybe someone on here may have this also and may have a few hints of success or ideas to help.

Thanks for the support out there...

Becca

14 Replies

Becca: I am sorry to hear of this new phase. I too have sudden muscle impulses but on much smaller scale. I'm praying for you and you Docs up on "Pill Hill" as it's know in Portland. Better days and even eons are ahead for us.

So nice to hear from you..so nice.. Thanks for taking the time. How is Idaho? My husband and I have been tossing with the idea and in prayer over leaving Oregon. Looked at Pocatello due to the lower house prices.. Are you holding up ok my friend? have you had much help with finding a stable place with your health?

We love it here. No hurricanes, tornados or floods. We have a great church and neighbors. My wife landed a spectacular job with a great hospital. All this takes some stress off of me and I am certain that has accounted for my reduced symptoms. However, one doc recently discovered my cancer is back so I may attend another "carving party" soon. But all in all this has been a terrific move for us. With those horrible, little ANTIFA punks running around Portland like self imposed Morality Police, we know we made the right move by heading East. Who is your doc at Oregon Health Science University?

So good to hear you have relieved some stress, my goodness. That dang C word is just a curse...praying that off of you brother. Have you studied the Gerson Therapy? Its such a good flow of natural support through proper nutrition. I keep saying I'm going to plunge into more of this I am convicted to do more now. Must be a recipe for sustaining after all God gave us so many healing plants you know.

It's funny you should bring up the Portland nightmare, we are seeing it strongly move in our area in Salem/Stayton. Its actually getting out of hand. Something the news does not want to disclose. Its even out here on the river like crazy and now that I am in the art world there is a heaviness that always tries to wedge in. My husband works directly in Salem and is in upper management, it is so difficult navigating through it. Overall love will win. Therefore we have been contemplating moving to Idaho to still be close to Oregon family but to get out of the way of the crazy. It's uncanny how over the top it is here. Can't explain it, you would have to live here to truly know.

I am at the OHSU with Dr. Deadare, he is amazing I adore him. The neurology department however seems to be baffled, they gave me a twenty something young lady who talks so fast and who doesnt make eye contact, she breezes through the exams and doesnt seem to listen hardly at all. I'm not going back there anymore. Hoping and praying for some help here. The pain with the jolting body movements drains me incredibly. I feel like a wet rag just wrung out to dry after the hits happen. I cant predict them either so it just makes for a insecurity for going out too long during my work day. I schedule my clients very lightly in order to sustain. It's funny I work with people with disabilities and help them obtain stable employment yet I too qualify for my services. I sit quietly and listen knowing inside I can relate completely. I have been open with the state office that I work with on my own barriers yet they reassure I am still needed, appreciated and they keep filling my client roister, even more than I can handle. I have to push back clients all the time due to my personal inability. If I get too stressed I see tremendous effects. Some clients I simply have to say no too in order to take care of myself.

My paint classes that I teach are a joy to work in yet the set up and the break down and the politics that come in to play have often caused a day set back after a large class.

All in all I am hoping and praying and searching for solution.

Thanks for your support, you have mine too

Becca

MaryF
MaryFAdministrator

Firstly any good Hughes Syndrome./APS doctor would be looking at your INR, is it high enough? Some find it goes away with the right target setting. Also it is very important to check out your B12, your D, your folate and ferritin and a full Thyroid panel, so often people are told they have 'Fibro' and actually they turn out to have a collection of things wrong including their Thyroid, also their other levels not right. For instance I was told my Thyroid was fine for years with the TSH test, but actually once I did my own testing, I did one like this: bluehorizonmedicals.co.uk/t...

I found that I had bad thyroid problems which needed sorting out. You have had a great explanation above regarding, Fibro, which I could not put any better myself. However I do know that working on myself with the right testing and also consultant brought about some positive change. I hope you feel better soon. Also Sjogrens Syndrome, Prof Hughes himself usually writes about the trio of disease which is Hughes Syndrome/APS, Sjogrens and a Thyroid problem.

I enclose this useful article for you. the-rheumatologist.org/arti...

MaryF

Mary you are such a God send, thank you for your advise. I listen to you as I know everything you have given out has been helpful big time. I have been focusing on the B12 and the D and they keep saying my thyroid is fine but I know I have not had the tests you laid out....I'm going to march in and ask about the proper tests. My INR is stable I keep it at the 3.5 and 4.0 range.

I have gained fifty pounds and have the hardest time getting it off, and I walk consistently and have never not once had to worry in my life about my weight. I am not made to be so heavy it poured on me..then the hysterectomy also. The fatigue is a battle yet I do battle it so I'm not giving into any of this. Thank you for more answers.

Thanks again, Mary...Big hugs to you

Becca

KellyInTexas
KellyInTexasAdministrator

Becca,

I would be very very hesitant to let anyone diagnose you with fibromyalgia. It can be a catch all bucket diagnosis for not really getting to the bottom of defined rheumatic differentiated connective tissue disease.

1. White “dots” on the brain should not be dismissed.

I think this could play a part in what’s happening in your ramping symptoms.

I’ve recently been diagnosed ( along with my already very aggressive APS - no Lupus) with sicca progressing to Sjögren’s syndrome. I also just last week saw the leading USA APS specialist in Colorado, who studies briefly under Prof Hughes. She confirmed this and actually did a Schirmers test which was ,” bone dry.” My RF is through the roof, and I’ve had one positive ANA test, but the traditionally antibodies testings are negative.

She is running the early, more sensitive test, so who knows what it will reveal.

I have recently learned there is a neurological sub set / component of Sjögren’s syndrome that affects nerves. ( autonomic nervous system, neuropathies, etc) You might want to do some research into the British Sjögren’s foundation and the American one as well.

See what you think about this. It also causes a lot of the “ fibromyalgia “ aches and pains.

Don’t forget Prof Hughes often talks of the triad: APS, Sjögren’s, and Lupus. ( the low or lazy thyroid comes into play in that mix also. )

Often times fibromyalgia is mistakenly diagnosed to the detriment of the patient, and it’s really Sjögren’s. Very important distinction!

Knowledgeable response Kelly, finally seen by Dr S I see! Great I hope you got some very good answers with a decision in how to move forward, please pm me, I’m curious to details, thanks, Cindy

KellyInTexas
KellyInTexasAdministrator in reply to Wittycjt

Cindy- not sure and not posting names of docs yet. When I get it figured out I’ll let everyone know. In due time...

I don’t have it works out yet... at all. Not at all- not by a long shot and I’m very worried and concerned. I’m not well at all.

So sorry to hear you are still unwell and havent any answers. I am sending you “vibes” for strength and perserverence. I hope they find you. Cindy

KellyInTexas
KellyInTexasAdministrator in reply to Wittycjt

Thanks! I’ve got answers... no one in Texas will implement. I got software. Hardware won’t run it...got it? That’s all I’ll say. Don’t want to damage any reputations. Hopefully I can find a way.

Thank you for your reply. Yes I agree with all of the above. It can be a catch all diagnosis for sure. Also noted, they just took Sjogrens and Lupus off my chart after saying I had them both for a few years now. They took it completely off and said no signs of either it is Fibro and APS causing the issues and the toss in of chorea.

I am on quite a journey again....the brain spots concern me the most as I have had a constant headache for a few months now but they say that is an APS thing and sinus. I can't win so I just move on...the body jolts I'm going to work on less stress and take a few things off my list to see if something lifts here. Stabbing in the dark....

Thank you so very much for the help. That makes so much sense. Overall I am quite chipper of a human :) I have a strong faith also and I do meditate on Gods word daily. I have set times where I shut down and let God. so thank you for the confirmation of this. As far as the chorea goes, I too find this baffling due to the pain I am having with the jolts. The jolts do not come without pain most often it is swift and like an electric shock.

My rheumatologist said that I am to be careful with stress as it is a major trigger for the symptoms I am having. I explained to him that I am not a stressed out person and he giggled saying that most all stressed out people say that LOL. My kind of stress is good stress yet it is stress non the less. I have owned a large non profit since the year 2000 that served over 4000 people a year. It was my heart and lifes work. When I had the last PE my family and team made a decision to shut the outreach down not to mention I was constantly sick from all the clients that would bring in every ailment through the door. I have seen a huge difference in my immunity and rest. It truly has helped, sorry to say because it was a blast making such a difference yet I was loosing myself with being so sickly. All this to say, I guess it may be time to shave more off my list of to do's and take more river walks and submerge myself in my paintings. My INR's are quite stable, I self test and I monitor it consistently. I keep a strong 3.5 to 4.0

I am going to do more reading and work on the diet/natural side of things. I am listening...so thank you again for the support

What meds are you on?

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