Sticky Blood-Hughes Syndrome Support

Hello I'm new here

Congratulations to Professor Hughes for creating this excellent Charity GHIC and support network. It can be very lonely when you are suffering with symptoms that one else understands, and I hope by sharing my problems online it will help others who maybe the same.

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Hi and welcome, I presume you have a diagnoses of Hughes/APS?

Please feel comfortable asking us any questions you may have regarding this desease.

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Firstly many thanks for your message. I have suffered for years with Hughes/Sjogren's Syndrome. More recently I have been diagnosed with Autonomic Failure and more, so life at the moment is very difficult.

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Hi, I also have secondary Sjogrens and other problems too, it seems that our bodies are not happy just giving us one autoimmune disease!

I hope you have a good specialist that understands you?

Stay with us, we have many experienced friends on here that can share and support with you.

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Thank you and it’s great to have this support

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Hi linpin and welcome - if you have been following me resent posts , they are all on here , if not go back and read them . We have been going over the nerve issues and in my case PAIN - and there have been many site put up on this end of things and i am here with what will go on with me . help or answer anything regarding me .

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Thank you

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❤️What is going on now? Where are you with getting the INR raised? Also, I found one more thing to show your doc. Let me know if you need it- very useful.

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Send it along my friend -- I can't imagine what you are going thru . --I have stomach pain -cramping . and the nerves in legs - FEET - arms and back . can't even think about what you are going thru . Big Hugs my friend . YES please send along what you have . i have been given a lot of info to process and i go to PCP tomorrow { this will have a lot to do with Raising INR range } this will be the start to taking to my Hemo in Leb . Dr. Hemo will make that decision along with the EMG and if that will be done -- i had one in 2012 and as i remember it was the worst i ever had .so that will hopefully be decided tomorrow . BUT blood today dropped even more and i have been increasing my Anti's. This could be my wacky system and it has doing this since day one in 2009 . So send it along kel, please. i go to my appointment tomorrow at 12:30 { i leave home at that time } best to you. BBN

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I think we are 3 hours difference , depending where you are correct ?

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I think only one. I’m one hour earlier than you. I’m in central time zone. I’m one hour north west of San Antonio in the Texas hill country.

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I , too, suffer with dysautonomia. Feel free to ask me anything, and if you are up to it perhaps I could try and learn from as you as well.

Professor Hughes has a particular interest in this ,” nerve” involvement with APS.

Just no fun at all, is it?

I try to keep a dry wit about me! I’m loosing my vision- so lots of Helen Keller jokes... you’ve been warned...

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I had to google who Helen Keller was!!

🇬🇧

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Seriously?!

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At last I have found someone who is suffering with this. There isn’t many that have got this and if it wasn’t for Professor Hughes and Dr Lobo I don’t know how I would have coped. The initial problem is my blood pressure going dangerously high and low. My GP wouldn’t believe me that I had swings high and low blood pressure and said it was just stress, but it wasn’t. I now have nerve damage in legs and hands and other worrying symptoms. It is very depressing but I try and keep positive.

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I am clotting to the ting vessels that “innervate “ the bowels. Additionally there is a problem of with the brain/ gut axis . Smooth muscle cells .

My gastro said there is a second “ brain” in the gut. There are almost as many “ neurons in gut as in brain.

He said do not ever let a doctor tell you otherwise- some docs say this is not true- but it IS true. I take Pamine Forte ( methscopolomine Forte) to help brain and gut communicate. I go into paralytic ileus - bowels shut down completely. Then organs shut down. ( become chronically infected/ stop working... no signal from brain to work properly.) I’ve had a few abdominal/ bowel surgeries.

I also have partial complex right temporal lobe seizures. This just helps to confuse things. ( post ictal phase can cause nausea .)

I have POTS apparently. I think I’m asymptotic. My neurologist wanted me tilt table tested. It was positive. Early and mild. I do not suffer ill effects from it all.

My blood pressure runs low, to normal- usually on the low side. I think quite stable. No real problems at all. Never at all high.

It’s the gastro / brain issues that are really severe with me.

Additionally,

My optic nerves are clotting. That’s likely thrombosis- or just severe sludging that’s had resulted in ischemic death nerve cells. Retinal as well.

Venogram to eyes ( and Brain) were clean.

Fluctuating myelopathy also in spine. Banding tightness in neurological reflex tests. “ too brisk.” I don’t know what this means , actually. MRI of spine is totally fine - no lesions on spinal cord or brain.

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I’m be told that my symptoms could be aggravated by my bowel as well and told the same that it is the second brain in controlling the nervous system and if goes wrong it can cause severe swings high and low with the blood pressure. I have had a slow bowel which backs up and stomach get bloated. I also suffer with a hiatus hernia, bad breath and when I go on antibiotics because of my liver the symptoms improve. I have asked my consultant whether going on antibiotics regularly would help and it has been suggested this could.

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My gastro consultant did put me on a course of antibiotics every three months like clock work. It did not help very much . ( pre APS diagnosis.) He said it would not destroy to good biota. We stopped when APS was diagnosed and warfarin started.

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How is your bowel now? Do you get a bloated stomach? Good news that you are warfarin and hope all your symptoms have settled down.

A broad spectrum antibotic has helped stablised my blood pressure serious swings but never normalised it, but I certainly felt better and had more energy. When I am off them I feel so ill and unable to do anything.

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I’m better as long as INR remains at an average of around 4.0

Tummy is not perfect but much improved. Dysautonomia is never going to go completely away I don’t think. It’s very much a work In progress. I think I’m just starting to address it, really.

( and yes- in full ileus I get very bloated- very tight and distended. This is when I’m very ill and hospitalized. Npo.)

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Where are you from?

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UK

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Hi there, thanks for the feedback and welcome. MaryF

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Thank you for your welcome

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Regarding feeling alone when surrounded by people who dont understand life with a chronic disease, — look for the book “ In the Kingdom of the Sick.” You’ll feel like the author Laurie Edwards, is standing beside you, holding your hand.

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Thank you at last I have found people who understand

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It really does help sharing your problems as others help and gain knowledge too.My sister asks why I talk to strangers on here but I get more answers than from medical professionals and they are more welcoming.Any you're struggling with they will try help

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I agree sharing your problem with other who suffer the same illness really helps. My problem has been that I have been so ashamed of being so ill and so tried to pretend to others that all is OK, but it is not. I get so fed up and always ask the question why it’s happened to me?

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