Sticky Blood-Hughes Syndrome Support
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Has anyone else on here suspected water on the brain ?

Many years ago at St Thomas a consultant said "he had to get the water away from my Brain".......I was rather young then & my now diagnosed problems had not been come into consideration.

I have always bloated up & down this can affect my whole body......but my face alters in size and i feel all swimmy.

I have had big bags of water under my eyes that look hidious....any one else get this ?.

14 Replies

Wasn't the Consultant referring to something like hydrocephalus? Have you ever had that or been treated for it with something called a shunt? Here is a link that explains it. I dont think it would cause the sort or symptoms that you are suggesting with bloating of the rest of your body and face.


Sorry if my spelling is incorrect but i put lacri lube in nmy eyes last night & in all blurred this morn.!

I seem to remember readinh something to do with water on the brain to do with Lupus.....dont quote mr.......still all swimmy this morn.


Interesting link Aps but your right it is not what i am describing, I had not heard of that one before.

I have lesions on the grey matter of the brain found on a brain scan.

Many years ago St Marys in London were going to admit me saying they were looking for a very rare illness.....didn't say what they were looking for......but due to lack of beds the stay in hospital never took place.

At a later date I called my notes to see if I could find out what they were looking for but i could not find any documentation refering to the incident.

It was a few years later that they took me in for a day. I had a catheter put in my arm on every hour they pumped something into the catheter, they also took blood.

The results were that I had malnutrition the sort found in an elderly person they said !!!

Also a very low calcium result ! I was told to drink lots of milk.

Looking back now I dont suppose medical science was very advanced & the low calcium was not followed up......this was in 1967.

I went on to have thyroid problems diagnosed my health was taking a decline even after being put on medication.

It was in 1976 after some insistence from me my notes were called, the low calcium was spotted......genetic Hypoparathyroidism.was diagnosed.

Your guess is as good as mine Aps....Jillymo


My sister died from Hughes last year after a small TIA she also developed Hydrocephalus so they tried to operate. I do not know the medical terminology but she died from the TIA but at the same time she developed fluid round the brain - hydrocephalus.

Also, I have hyper/hypoparathyroidism? I am on calcium tablets and also take Colecalciferol 20,000 iu (international units) which was prescribed by the hospital which is for vitamin D deficiency. I do not know if my sister had it. Her first anniversary is coming up in the next month. I am a vegetarian and was told I had to drink a pint of milk a day which I hate. I was taking soya milk but the specialist or nurse told me that, like for like, cows milk is better than fortified soya milk that I bought from Holland and Barrett. Some of my veggie friends are annoyed by this, that I have to have a pint a day. It is difficult but then every now and again I do like a latte.


Hi Peggy,

I had to come back to you after fully reading your story, It seems you have a lot going on with your health.

From what i am reading your late sister had Hughs am I correct ? From the medication you are on I assume you also have Hughs., Hypoparathyroidism.....

and maybe Sjogrens.

Self harming will not make it all go away it's only a temporary relief, I know all about self harming I had a nieghbour who used to do it. It is not a wise thing to do with your many conditions.

In the USA they are doing a lot of laboratory research into Hypoparathyroidism lets hope they come up with something.

Are your mum and dad still they have poor health.....mine have passed away so i could not make a connection with my own health.

I do have a son who has inherited PTH the same as myself this was a great upset to me.

I am sorry to hear of the sad loss of your sister it must have been so painful for you & I can understand you wanting to let that pain out.

Bless your heart Peggy.....your in my thoughts no matter how unwell we are we care for others..

Big hugs hunny I know how you feel. Jillymo x


Hi Peggy,

Bare with my spelling eyes still a bit blurred from the ointment even after bathing them.

Can I ask If your parathyroid problem is due to surgery or genetic like mine ?

With regard to the milk I have some contradiction on that one.....some say you dont need the added calcium if your being medicated....others say drink milk !!!

At last my eyes are clearing a have to be careful Peggy not to raise your calcium levels to can feel just as unwell high as you can low.

I cant say I have heard of the medication you are taking....I'm on calcitriol.

So what is it you have ? if on D & calcium supplements i would say you are Hypo not Hyper

hypo is not enough...Hyper is to much.

Do you also have an over or under active thyroid gland ? i'm on thyroxin.

How do you feel in yourself are you as lathargic as I ? i find my consultant is interested in the blood work but forgeys i'm human & have some awful symptoms.

Nice talking with another sufferer with the same as I. Jillymo


Hi Jillymo,

Yes, I have Hughes, lupus etc. I don't really know what Sjogrens is. I have had part of my shoulder bones removed due to severe arthritis, I had a total knee replacement last year due to severe arthritis. I have a long list of illnesses half of which I cannot pronounce. I had a mastoidectomy a while ago because I had an ear infection that was affecting my brain, or on my brain so they operated immediately. My specialist said I had brain damage last year due to TIAs And strokes. Throughout my childhood, I was told I had 'funny blood'. No one made the link to hughes then even though it was around

Thanks for your reply, I hope you can keep in touch and I will look up hypoparathyroidism. I had a half brother who died of an enlarged heart a few years ago for no apparent reason. Both parents had strokes/ heart attacks and died young like yours. So as this is genetic I am assuming we got Hughes from our mother as my sister and I are half sisters. We had a white English mother and I had a black African father who was also riddled with cancer but a stroke killed him finally even though he was, at the end of his life, a bag of bones. We know our mother had blood problems so if you or anyone can tell me how to get access to our parents' medical files, if it is at all possible, that would be great. Each different specialist I see said is it in the family, are any other relatives living with this disease. My mother and her brother, who has had nine heart attacks, well they both had coeliac disease and I am being tested yet again for it. The last time I was tested I was already on a gluten free diet, I bought a bread machine especially to make gluten free bread, so my renal dietitian has said it needs repeating because I am back on home made wheat flour bread. I lost four stones in weight in five months when I gave up wheat. so I am seeing a dietitian again because my kidney specialist wanted me to, before I saw the stroke dietitian which ended last year. The good thing about losing all that weight is that I felt better in myself, though I still had severe painful joints so I was not even exercising, though I was seeing a physiotherapist. My severe central canal stenosis secondary to posterior disc bulges at L3/4/ and L4/5 cause me the most pain. This was found on one of the MRI scans plus I have pelvic arthritis but the Pain specialist is too scared to give me steroid injections because after the last one , I had a stroke eight days later. Also, he is worried about blood leaks from the injection.

But I am having a tooth out on 6th June and I have to go into hospital to have it done. my Haematologist told the dental hospital that I have to have my INR tested the day before and as long as it is below 4, I can have the tooth out. I had a tooth out once before when I was on Clopidogrel and the dentist asked the haematologist for advice and I had to get Tranexamic liquid from the hospital pharmacy to stem any blood loss. I do not need to stop my Warfarin though unless INR is over 4, in which case I will not have my tooth taken out, but at the rate it is rising now I doubt it will be that high.

Sorry, to go back to the pain management, I can only stand for five minutes and the pain gets worse particularly in my spine. I am permanently in severe pain, despite Tramadol, 30/500 codeine - Solpadol, morphine patches, 5% Lidocaine plasters and Diazepam due to muscle spasms and cramp, I find that sitting on very hot water bottles helps but I have blistered my skin so many times and my Pain specialist was shocked when he saw them. I was being tested about six years ago for MS but it is Hughes mainly, I do not know why they always put down persistent Lupus Anticoagulant on my list of physical health problems because I thought that was just a blood test, To be honest, I feel that I have had enough. I take 18 different medications a day. I cannot name them without getting the script list.

Do you get a rash in the sun? I am allergic to the sun in that I get tiny pin prick, itchy rashes. I have factor 50, my GP prescribed it to me and now I buy it in the pharmacy, which seems silly as I am mixed race so I look silly with white factor 50 sun block on. It never seems to rub in properly.

I have also had a pituitary tumour for 13 years and it was only last year that ithad shrunk enough to come off 1mg cabergoline taken on a weekly basis. In fact, I had been seeing the specialist somewhere else so I asked to be transferred to where I live to see the Endochrinologist here,he did heart valve tests etc. I was told in January this year that I could have a heart attack at any time, which really threw me. Do you have heart problems. Ho wis this affected by the Hughes? Because it wa sin the context of the Hughes appointment that I was told this scary news. But to tell you the truth I used to have chest, arm and back pains but they had subsided on Warfarin.

Thanks for telling my about Hypoparathyroidism, I didn't know which one I had but it is written down on a specialists letter somewhere.

Sorry, I hope I have answered your question.

Best wishes Peggy.


O hunny what a hell of a story......I'm in tears reading have you kept going ?

Sounds like you have been to hell and back.....thank god you have good consultants

over there.

Have you heard of ricketts ? many black people developed it when coming to colder countries !.....It was due to the lack of sun.....we need sun for our vitamin D.....with

out it we can not store calcium.

But of course our illness is different it is the parathyroid glands not working properly,

my consultant suspects faulty kidney receptors.

May i ask in what order your illnesses were diagnosed ? It took them years to find out I had HPT.

I am awaiting to see a Rheumy to see if i have Hughs....but you must know what it's like you seem to be waiting for ever for answers.

Sjogrens is to do with the glands not producing enough saliva you get very dry mouth, skin & red dry lethargy.

I have a curvature of the spine L4 & L5 & like you I get the cronic back pain......some years ago I was given an epidural;that seemed to help for a while.

I also have arthritis that is very painful & makes walking difficult.

My shoulder & neck hurt like mad, i have a lump on my collar bone just below the thyroid.

I have had steroid injections in my knees they hurt when they went in !

I have painful itchy ankles & yes I get the rashes, like you I cant tollerate the sun..

My mother & father split up when I was young so Iwas brought up by my dad, I did'nt know my mother & now both parents have passed on.

My father was not a well man but i cant remember him complaining of constant lethargy.

My problem is finding a consultant that understands HPT....the blood work is all very interesting but at the end of the day we want a bit of relief from our dibilitating symptoms..

All my doctor wants to prescribe is anti-depressants Peggy if i were to take them I would not be able to get out of my bed.

Is your husband understanding & giving you support ? I hope he is a good man & taking care of you.

I shall be seeing a Rhuemy in July lets hope hev can help me with yet another diagnosis.

Wheat intolerance is another I have I havn't the energy to make bread so I sometimes buy gluten free bread or just have rice cakes.

I am waiting to see a gastro about my stomach pain & bowel problems.

Keep in touch Peggy it is nice to talk to you but most of all give yourself some TLC

we dont want stress it only makes this illness worse. Jillymo xx


Hi Jillymo,

I also have hypermobility, if that is spelled right. Is that a symptom of Hughes / aps? In fcat the first orthopaedic consultant said because I was hypermobile that he couldn't give me a new knee but he said he wasn't giving up on me, he would refer me to a colleague of his, and yes, this second consultant did agree to the total knee replacement. And yes, my leg dislocates and goes backwards so the first Orthopaedic specialist was right on that account but it has changed my life (pain-wise) though due to other joint problems particularly my lower spine, I cannot walk very far. My spinal cord has been crushed in two places as they say so they were going to operate and now because spinal cord involved they dare not but I cannot cope with this pain. They said I may end up in a wheel chair if I have the operation but it is heading that way already. I have a zimmer frame which I never use so I use a tri-walker to walk with indoors and out. I cannot carry anything. My fingers have 'gone funny' this last year, meaning they sometimes do not curl up properly and at other times they clamp up like a vice. The computer is my only outlet of enjoyment. you do not need to curl your fingers up to type. Writing is a problem. I also find it difficult to swallow food since my last stroke but I am talkative. I had to learn to write again but my handwriting is so large I prefer to type/ email friends etc.

I read somewhere that Hughes/aps affects your fingers. Do you or anyone know in what way? Is that what is wrong with my fingers? My GP thinks it is a bit of both: arthritis and Hughes. Is there a cure because I am unable to use my hands/fingers mainly most days even to put a bra on.which is embarrassing if you have a hospital appointment which are on a weekly basis at present.


Is it just the finges that clamp up Peggy ? With hypoparathyroidsm you can get tetany....look it up.

I have arthritus in thejoints of my fingers & toes making it hard to find comfortable shoes....I found with my writing my wrist made funny a clicking.

I think Hughs can affect you fingers look up the symptoms bor type in hughs and finger pain.

Your doctors & consultants seem to be more up to date with helping you than over consultant Proff R Thakker carrys out a lot of his work in the USA !

Dont worry about not being able to wear a bra it is the least of our worries....I tried those ones you put over your head but I still couldn't manage.

Let it all hang out :-0 there used to it. Jillymo xx


Hi Jillymo,

You seem to h ave a lot on your plate too, so I empathize with you. In fact, I grew up in Care so did not know either parent until they were nearly dead or in my mother's case at her funeral..

I hope you find an understanding and sympathetic consultant soon, Jillymo.

I have chronic fatigue but I do make myself do things though sometimes it is difficult, and you know they keep saying you have to keep moving because of your clotty blood but when you are in constant pain it is difficult, isn't it?

I was clueless as to what I had, I had never heard of APS until I was told I had it, and then I was still clueless so did n't and don't ask questions.. They had, like you, found lesions on my brain scan when they were checking for MS,

I have to go , a friend is taking me out for lunch. Speak later Jillymoand take care of yourself!



How strange i was partly brought up in homes.....when I did find my mum i only saw her twice & then she was killed in a traffic accident !

Thats what i was being scaned for MS when they found my has been a very long journey Peggy to get this far.

Seems you & i have a lot incommon, enjoy your meal i'm happy to hear your going out.

Catch up soon. Jillymo xx P.s How old are you I'm nearly 62


Hi Jillymo How strange is that? Both being brought up in care. My meal was great thanks. I was told to eat fish for my bones by the specialist so ate fish but that was all I could manage because wasn't that hungry apart from a few chips.

Unfortunately we are not in the same age range but it would still be great to keep in touch. Are you retired ? Or have you been unable to work due to ill health. You don't need to tell me. I get involved in Care Trust research activities. I was told to finish off my PhD but I am not sure what to do because a friend has just handed in her Viva and now another friend is also thinking of starting a PhD. I keep getting told it is abouttime I finished mine but it has to be an original idea and I am sure someone has replicated it by now.

By the way, Have you heard of the Care Leavers Association? It is for adults 18+ to 100+ an there is also the Care Leavers Reunited website. where you can register your home or foster home and meet up online, if it was a good experience with other ex-children in care that you have lost touch. It is now an international organisation because there's Australia, Jersey etc. so many people meet up online or you can leave a pseudonym. It is really good.Have a look if you feel like it and let me know what you think of it? Do not identify yourself to me, You must have some privacy. But is is worth looking up. You will need to register

Good luck with your hospital appointment and I hope you finally get the diagnoses that you are looking for.Yes, it is true I never have had any problems with specialists. They are all really kind and willing to listen, etc.I also write them a few notes. which they put on file.

Take care of yourself Jillymo


Hi Peggy,

How are you keeping with regard to your health ? since the site changed I have lost touch with many on the site.

I have now been diagnosed with Sjogrens & a fatty liver ....thats on top of all the other things that are going on with me.

I have not kept to well in my self due to the warm weather I just can not tolerate the you find it affects you ?

I'm awaiting the results of bloods taken in search of defects to do with liver problems.

My consultant has increased my thyroxine to 175mcg so lets see if it helps with regard to my lack of energy & increase in wieght.

The Hypoparathyroidism remains the same with calcium levels being slightly on the low side.

Not been on the site you mentioned but I find the Fracis Frith site very good.

I have had pics sent of the childrens home I was once in & emailed old inmates......great fun.

Take care Peggy

Jillymo x


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