Help?

[Jazz3914]

Hi I'm 23 years old and live in Sussex I was diagnosed when I was 21....I have a 10 month old little boy and I am struggling. I spend all day trying to fight falling asleep, trying to get rid of headaches, joint pain and sensitive eyes but my biggest problem is the memory loss and confusion. Is it normal to get it so bad? I will argue with my partner because he will talk to me and I get confused mid-way through his sentence and instantly forget what he has said. I walk home from work (which I have done hundreds of times) and get lost because I've gone down the wrong road or I lose chunks of time and have no idea where I am. People say its "baby brain" but I feel like I'm losing my mind! Anyone had this problem before? Thanks

[MaryF Administrator]

Hi, you need an appointment with your consultant! Are you seeing one of our specialists, one of our recommended ones off the charity website? Which medication are you on? MaryF

[Jazz3914]

Hi. I'm not on anything. My doctor doesn't seem to know anything about it. Every time I try and get help he address's the symptoms not the problem. I'm having to give up work for a while because I can't cope with it as well as looking after my son. I was on fragmin and low dose aspirin when pregnant (after late miscarriages previously) and I hardly had any problems. I found I was better when on warfarin too ( couple of dvt's) and I was diagnosed by another doctor who has since left..seen a rheumatologist who gave me insoles for shoes because my hip, knee and ankle are not aligned apparently and cause me alot of pain. Not sure where else to go as no one takes it seriously when I make an appointment. And they just try to get rid of me after they see how often I go in for the same problems....sorry for long reply

[MaryF Administrator in reply to Jazz3914]

Please take your most trusted relative, friend, colleague etc with you, as your patient advocated to your next GP appointment and insist on a referral to the Hughes Syndrome/APS specialist in Brighton, you will need to state to your GP that if something happens to you, having asked for help and a sensible referral, it will be their an extremely serious issue and you will be seeking the advice of your local MP, as they are blocking your care. Open the section for South East Specialists: hughes-syndrome.org/self-he...

MaryF

[Jazz3914 in reply to MaryF]

Thanks for the advice. I will take my mum. She's pretty stubborn and always gets her way I just need to get my feet pointed in the right direction. Thank you.

[MaryF Administrator in reply to Jazz3914]

Let me know how it goes, and prepare for this appointment and the referral you wish for, bullet point history and symptoms, and while at the doctors insist on new blood tests, all the test for Hughes Syndrome/APS an ANA, also iron, B12 and D plus a full thyroid panel, then they can be repeated again by the consultant. hughes-syndrome.org/about-h...

Things will get better for you.

MaryF

[Manofmendip in reply to MaryF]

Hi, I totally agree with my colleague Mary.

Dave

[disloyalorder]

Hi, I've had this quite a lot in the past - my short term memory is pretty terrible and I went through a long phase last year where I barely had the energy to get up and go to work. I would literally get up, go to work, get home and get straight back into bed I was so tired. I've been to neurologists in the past with headaches that just didn't go away, but generally all they could do was prescribe stronger painkillers.

I think it's always very difficult to identify which symptoms are APS, and which are other factors. I'm pretty sure stress and sleep deprivation is probably going to aggravate your APS problems more, at least that's what I found.

I wish I could provide any more help about how to reduce your symptoms, as it's advice I would have loved to have myself, but I guess it's just worth raising these problems with a doctor/specialist and monitoring them yourself (maybe a diary? Although I never wanted to do that myself as I thought it would just make for a very depressing log!) to see if they improve or get worse.

[Lure2]

I have had exactly those symptoms before I was put to warfarin and was ok again.

I have APS and all the anitbodies in high titres and selftest on warfarin with very good result since 4 years. We need to be at an INR over 3.5

Are you diagnosed APS? Go to a Specialist and trust yourself. The GPs and ordinary doctors know nothing about this. You are right!!

Read "Sticky Blood Explained" by Kay Thackray. I have it in pocket. She has APS herself and writes about the different symptoms of this disease. It is a very good book.

Best wishes to you from Kerstin in Stockholm

[london-lass]

Hi.

So sorry for you. I was the same until on warfarin with a range of 4 - 4.5. Over 4 I am fine, below that my symptoms return. I thought I was going mad, or getting Altzheimers! Now I am managing fine. It takes time and the right consultant.

The suggestions already made are good.

Good luck and feel better soon.

Blessings Ann

[GinaD]

I can certainly relate! APS is still not entirely understood. The fatigue and brain fog might be from micro clots in the brain which are so small that the patient can detect them but they can not be measured on today's machines; or it might be because your immune system is on the 'high' setting and every day can be as exhausting as those awful days just preceded a bad case of the flu.

But whichever of the above causes of our oft-reported exhaustion and brain fog, getting on the right meds at the right dosage can alleviate symptoms.

The problem with most GPs (and even many, if not most 'specialists') is that they look only for the pronounced, and measurable symptoms of pregnancy loss, DVTs, PEs, heart attack, ischemic strokes which are large enough to leave damage on a scan. But APS is a disease of the circulatory system. Our blood clots easily. A lot. And once a clot forms -- somwhere . . . anywhere -- the vessel walls are either damaged, or exhibit an inflammation which serves as the origin point of another clot. So -- we end up with pain here or there (in my case it was my left hip. And yes! I did have osteoarthritis. But the arthritis also served as the focal point for clots because the hip pain would rise and fall with my INR.) But the average GP has little experience in how varied our symptoms can be.

So -- get thee to an APS specialist who has heard, and successfully treated, our widely varied symptoms before.

Many of us lead mostly normal lives, working, raising kids, doing active sports and playing chess. But we need to have our disease recognized and treated!

[Hidden in reply to GinaD]

Gina. I also notice that my DVT leg hurts more when my INR is sub-theraputic. I have such a damaged vein behind my right knee that one specialist told me that without blood thinners, my leg would clot up again within 10 days. That was a really good explanation for why we have pains in different places in our bodies. I have been having a lot of brain fog lately to the point my mind went completely blank at the super market. I had to see the food items on the shelf in order to remember which ones I was there to buy. I ended up forgetting a lot of stuff. I guess maybe my INR needs to be raised. I have also had a CT scan of my brain with contrast and it was completely normal.

[GinaD in reply to Hidden]

The hematologist who diagnosed me gave me a similar explanation regarding DVTS at my diagnosis. The immune system concentrates on damaged areas. -- like we must consciously refrain from absent mindedly scratching mosquito bites that are several days old: the inflammatory itch can remain even though the subdermal area has already been " cleaned up" by the immune system. the only way to stop the itching is to stop scratching. Unfortunately, our internal damage inflammation does not come with a conscious layer override.

[molly1969]

Firstly have you been to docs??yes I get confused mid sentences. All sounds gobbledygook and cotton wool x

[GinaD]

Alzheimmers runs in my maternal grandmothers family. That ( no, I have not tested for that A-causing gene) and the stroke damage puts me at high risk for contracting the Big A. But if I do have it, or will get it, I must say my symptoms are going to be delayed due to my IPhone. Notes, appointments, people's names , and yes grocery lists -all carefully Entered and consulted several times a day. How could I shop for dinner without it!