Is it "normal"for Hughes patients to have passing memory problems?

[WayneL]

My Daughter is having increasingly longer periods when she is unable to communicate and is unaware of her location or surroundings.

It means that she is going to have to relinquish her drivers licence, (something she agrees with, by the way) and allow us to take care of her.

I was scared of her going out, fearing that she may get lost and be unable to return home safely.

Thanks,

Wayne L

[MaryF Administrator]

Hi there again, I am so glad you have found your way to this informative and supportive forum. Also I notice the links you are making through out Australia, if her medication is accessed and improved, then although this may continue it may be greatly reduced. There are plenty of papers on here carefully written during research periods with medical professionals, on the Hughes Foundation Syndrome Website, I hope these will also be helpful to take along to appointments.

genome.gov/17516396

Are some of the names being given to you becoming fruitful, in your search for help.

Also this is part of a comment lifted from an answer to somebody else a while b back by Kate, this might be a point of contact, so you could seek advice either off him or for a colleague he knows elsewhere. Please keep us posted - and here goes:

Hi there - the only Australian doctor we have listed at the charity is Dr Tim Godfrey who is based in Melbourne. It might be worth contacting him to see if he knows of anyone in your area.

Mary F

[WayneL in reply to MaryF]

Hi, Mary.

I rang Dr Godfrey's surgery and left a message on his service.

His staff contacted my wife early yesterday morning and gave her the number for the Geelong Rheumatology Clinic.

I rang them this evening and spoke with both their secretary, and Dr Hedley Griffith.

They explained that they don't treat APS patients at their clinic but refer them to Dr Godfrey's in Malvern.

As soon as we're able we'll make an appointment with Dr Godfrey, but were told it could be a few months til we get in.

Don't mind the wait as she's been 15 yrs without reasonable medical help and done most of it on her own.

Finally, some light emerges and we're so happy.

Massive Thanks to you all for the assistance,

It's awesome!

Wayne L

[Sarita]

Hi there

Small blank outs of memory have happened to me a couple of times, its usually when I am over tired and have a low INR. One time I was on the metro train and "Missed acknowledging" 3 stops.

Another time I had invited a couple over for dinner and was sooo tired after tidying up and making the dinner that when they arrived I practically blanked the whole nights conversation. My brain just didnt seem to be able to run at the speed I was asking it to do.

Hope this helps

Love

Sara xx

[jetjetjet]

hi wayne - i go thru the same things ,mid sentence loss total thought - some times it comes back some times not at all. remebering peoples names is always an embarassing venture. i think it is common with us sludge bloods------jet

[jessielou]

Hi Wayne

yes intermittant memory problems, cognitive impairment, speech difficulties are quite common amongst us hughies.

Mine improves when inr is higher.

Take care gentle hugs love sheena xxxxxx

[paddyandlin]

Hi Wayne,

As you have been told above memory issues is one of the biggest issues patients have with APS and as other have said the INR rasied has helpped in others going to see a memeory specalist has helpped as well. I hope we can help with some ideas of things you can do.

paddy

[Grudgings]

Hi there, this is the first time I have taken part in a discussion on this website (although I do read all the items with interest.)

I have had APS and Lupus for many years but have always felt a bit of a fraud as generally I am a fairly fit and active person. However over the years I have suffered five minor TIA's and do get many vacant and short dizzy spells.

Your question regarded memory loss, name retention and being unaware of your surroundings. All these problems happen to me on a regular basis especially loosing a conversation half way through (almost switching off) and always problems with trying to remember names. Which is not helpful in my job as a Swimming Teacher.

APS appears to be one of those illnesses with many varying symptoms and this website is proving very beneficial for many unanswered questions.

PS To anyone out there in the Leicester area please contact me as it would be great to set up a Leicestershire Hughes Syndrome Society (or maybe there is one already?)

[jessielou in reply to Grudgings]

Hi Grudgings

Welcome and glad you found us. Also glad we helping is good to know.

I live in Moira in Leicestershire, meet up with Suzy from staffordshire at the Stanhope Arms on the A511 in Burton-on-Trent, is great getting together with other sludge bloods especially when we both lose the conversation half way through, lol !!! If thats too far could try organise something closer.

Hope you well today.

Take care gentle hugs love Sheena xxxxx

[Grudgings in reply to jessielou]

Hi Jessielou

Thanks for the reply, so there are other people in Leicestershire with APS. Stanhope Arms is fine, let me know when you meet up next. By the way when I joined up I stupidly entered just my surname, christian name is Richard. I think I better change my title. Regards Richard

[jessielou in reply to Grudgings]

Hi Richard

pleased to meet you. Will let you know when meeting up again.

Take care gentle hugs love sheena xxxxx

[Grudgings in reply to jessielou]

Thanks Seena

[Suzypawz in reply to Grudgings]

Hi!!

So sorry to have missed this! I must have gone to sleep or something!! of course we will let you join the clan 'of nuttyness'!!!!!

Het between us we may make a little sense!!

Hope you are ok, Sue

[pumpkincake in reply to Grudgings]

As of recent I say...my daughters say it has been progressively gotten worse ...I have found myself very lost at times. Was shopping and walking and suddenly did not know where I was going ...had to stop. My emotions got the best of me because I now see it occurring and it is frustrating. I lose thoughts or mid sentence just blank out and cannot for the life of me find what I was going to say. I think my girls think I am losing it! Good Luck to you.

[Patsy8]

I am a newby to the site and am finding it so interesting and informative.

I too have had APS and TIA's for many years although generally I am well and healthy.

I hadn't associated my symptoms with APS I thought it was just me with the speech problems ,name memory loss, forgetting familiar places,I thought i was a dumb silver top! my husband tells of the concerts he has taken me to of which I have no recollection- Roxy Music, Everly Brothers, Johnny Mathis and Queen.

Is there a Hughes Syndrome Society in the Gloucestershire Area?

[jessielou in reply to Patsy8]

Hi Patsy

Welcome and glad you found us.

Definately not dumb silver top, I like that by the way made me giggle.

I sure there are others in Gloucestershire, I hope they`le be along and maybe you could get together, Suzy was looking into being Midlands Grooup Leader, don`t know how thats going, will find out and get back to you. We have met up a few times and do have a good laugh and is great to be with someone who truely understands.

Hope you well today

Take care gentle hugs love Sheena xxxxxxxxx

[WayneL in reply to Patsy8]

hi, Patsy8.

Welcome to this great site.

I am a recent addition to here as well, but like you, have found a wealth of information.

My daughter has a vast array of symptoms, nearly all of which can be attributed to her APS.

Glad to hear that you're well and not suffering the gamut of symptoms possible.

Wayne L

[Suzypawz in reply to Patsy8]

Hi Patsy,

there is a post I've just put on with a meeting that will be in Staffordshire in April, hoping a few will come in & around the area

Sue x

[daisyd]

I have problems with my memory, but also suffer from epilepsy. It makes me unaware of things going on round me I just stare into space until its over it makes me a bit more muddled for a while but the actual fit only lasts ? a minute or two could be more I am on medication for it, I think it has improved the fits. Luckly I never go completely unconscious.

All caused I believe by Hughes syndrome, brain damage

Love Karen xx

[WayneL in reply to daisyd]

Ht, Daisy.

I must admit to being fearful for my daughter, as she has had this disease for some 15 yrs and had numerous TIA's and associated heart episodes. Her periods of "blankness"have recently increased and I fear that the cumulative damage from these episodes will have lasting and potentially serious health effects.

It's just a thought but maybe the lack of oxygen to the brain during these times could be the culprit?

Wayne L

[daisyd]

Hi Wayne has your daughter been tested for Epilepsy. I think that mine was caused by lack of blood supply to an area in my brain.

I get the other things as well. loss of memory, conversation problems but being completely out of it. I believe could be epilepsy probably caused by the Hughes syndrome.

Good luck

Karen xx

[WayneL in reply to daisyd]

Hi, Karen.

Yes, she was tested and returned a negative result, so we have ruled out (for the time being!) Epilepsy.

She does have seizures that are epileptic in appearance in that she shakes uncontrollably and has no ability to prevent them coming on although she says that she knows when they're about to start up.

My concern is that if she's alone and falls she will hurt herself and be unable to get help.

Thanks

Wayne L

[daisyd]

?? It might be worth asking if she could try some anti epilepic drugs, for a short trial. Not 100% sure but i think some of the tests were negative for me

Karen xx

[WayneL in reply to daisyd]

Hi, Karen.

I also have questions about the seizures, and she has also been tested for possible MS but was negative at the time.

This was about 3 years ago and things have progressed since then.

There will doubtless be more tests soon and maybe some answers as well.

Will keep the tribe informed.

Thanks,

Wayne L

[pumpkincake]

Sorry to hear your daughter is having these problems too. I have found this and although I have not liked admitting it I know it is getting a bit worse lately. My daughters both see it and I think they wonder what is wrong with Mom! Best of luck to you and your daughter. She is lucky to have such wonderful parents!

[WayneL]

Hi, Pumpkincake.

Her periods of free time between episodes has diminished quite rapidly over the last 12 mnths or so and she currently has at least 2 clots (r/h lung and left calf muscle) to deal with as well.

Her Warfarin has not weakened these as yet and she is in constant pain with both.Her "fits"as I call them, have reduced when her INR's are in range.

As I posted earlier, It is my suspicion that lack of Oxygen to the brain seems like the most logical culprit of the intermitant memory, this occurring when the INR drops out of the range required for each particular patient.

PS Don't worry if your kids think you're losing the plot.It'll give you an excuse to get them to finally help out a bit! LOL.

Thanks for your kind words of support.

My wife and I appreciate them.

Wayne L