Could this be APS? From vertigo to su... - Hughes Syndrome A...

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Could this be APS? From vertigo to superficial vein thrombrosis to Splinter Haemorrhage to heart palpitations and more...

Misg profile image
Misg
18 Replies

Hello I am new here. I have been having alot of health issues in the last couple of months with no diagnosis at all. From my kidneys to pelvic pain and my liver I have not gotten one diagnosis for anything apart from PCOS. What has also concerned me is the amount of everyday pain. From stabbing pains in my stomach back pain that comes and goes, deep pain that i can't reach in my back, numbness on and off in my feet and legs, abdominal pain on and off. I have tested for h.pylori, coeliac disease, ibs all have come back normal. kidney function tests are normal, ultrasound of kidney came back normal too no infection either but white blood cells found plus liver inflammation for 5 months which caused dark urine and yellow stools (sorry tmi) but normal LFTs always and normal ultrasound apart from fatty liver (which should not cause symptoms.

I'm 22 by the way and I am quite confused by all of this. I am constantly questioned if I have anxiety but I am just trying to get an answer to all this.

Quite recently I have developed heart palpitations and what feels like skipped and yesterday have found a Splinter haemorrhage underneath my nail and took to google as I had not injured it. Apparently alot of autoimmune conditions can cause this as well as infection of the heart valves and high cholestrol including APS. Reading alot of some peoples stories I too have suffersd from vertigo and at times migraines from the age of 13 plus have also had a bout of superficial vein thrombrosis but that was following a blood test but no needle was injected in that site.

At this point I am looking for a diagnosis and I am not sure If this could cause all of this. Any advice will help deeply thank you so much for reading.

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Misg
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18 Replies
MaryF profile image
MaryFAdministrator

Hi, with your history of symptoms it would be advisable to be checked out, here is the charity website, which not only contains specialists across the world but also the three blood tests that you need to do. Be aware that people with this condition often have a Thyroid problem, and often Sjogrens as well. Many of us are gluten intolerant without being full Coeliacs, this is very common. I am one of those:

ghic.world/

At least by doing the testing, it will help your GP as well as yourself, and then if in the UK you can choose a specialist from under pinned posts over on the right hand side of the forum, if not, then it is local knowledge from other members on here plus the list off the actual charity website.

MaryF

Misg profile image
Misg in reply to MaryF

Thank you so much for your message. I just went through some information on the website which was very clear. I'm going to bring this up with my doctor tomorrow to see if I can get tested for this. Hopefully they take me seriously and don't try and throw anxiety as the problem. Again thank you for your message and the website.

ndstephens49 profile image
ndstephens49 in reply to Misg

Hi Misg, I have splinter hemorrhage’s at times. They can be due to heart issues or vasculitis.

Nancy in West Virginia

Misg profile image
Misg in reply to ndstephens49

Hi ndstephens49 thank you for your message. Did you have any other symptoms or problems during the time that splinter haemorrhage appeared? Mine has come after days of right back and abdominal pain and discomfort. I'll also bring this up with the doctor. Again thanks you.

ndstephens49 profile image
ndstephens49 in reply to Misg

Hi Misg, I have so many health issues it’s difficult to determine what symptoms result from what diagnosis. And, I can’t remember what else was happening when I had splinter hemorrhage’s.

AND, off topic, I usually try to slap some makeup on my face when I go out, mostly to doctors. However, I thinks it’s better to ‘look bad’ when you feel bad. Our illness can be invisible and making yourself look pretty may have a negative effect when your doctor does an assessment.

Just sayin’. Can’t hurt.

Nancy in West Virginia

Linpin22 profile image
Linpin22

Try not to be put off by doctors who tell you that your symptoms can be a result of stress or anxiety. I went through this before anyone believed me. Your symptoms need to be investigated especially your liver, pain, numbness and heart. How’s your blood pressure? Try and be referred to an autoimmune specialist to get the correct tests. It can be very frightening but dont get disheartened keep pursuing your doctor to get a diagnosis. SIBO - small intestine bacterial overgrowth could be the cause of some of your problems. Sjögren also could be responsible for some of your symptoms. Do you get dry eyes and dry mouth? Try and get these areas check.

Misg profile image
Misg in reply to Linpin22

Hi it is very difficult with doctors you almost feel ashamed about being concerned sometimes or questioning certain things. I have brought all these things up and at times it feels like I am not anywhere near where I need to be with discovering what is going on but alot of people go through this I guess. I have been referred for 24 hour ecg test. My blood pressure is always below 120/90 so it is alright and I don't really get dry eyes or mouth. I've heard of SIBO but have never looked into it so I'll ask my doctor about that and definitely about an autoimmune specialist. I need to referred to the right places.

Thank you so much for your message and the info and ideas given. I get so much from people on here. Thank you.

WendyWoo50 profile image
WendyWoo50

Hello, I am so glad that you found us I hope that you will get some help from here. So many of us have a variety of symptoms that we struggled for many years with - hence the 'Syndrome' part of Antiphospholipid Syndrome.

Often we are labelled as having some sort of mental emotional issues. Myself I was diagnosed as having ME for many years although having read up on it I knew it was nothing like myself. Except the chronic fatigue aspect.

APS often comes with other conditions particularly as mentioned thyroid but also Sjögren's Syndrome. I have Sjogren's. It is known to cause problems with the liver. I had inflammation of the liver but that was shown in LFT blood tests.

No one has mentioned yet but sometimes you can have APS without positive blood tests which is called Sero Negative APS in this case a diagnosis should be made according to your symptoms by a rheumatologist.

I'm sure you have looked at the list of symptoms that APS sufferers can experience.

Splinter haemorrhages are interesting to me because as a child I was always sitting with a sterile needle trying to get splinters from underneath my nails. I never realised those splinters were connected to the horrendous migraine headaches that began when I was 11. I had a daily headache ever since, to some degree or other - from the age of 11. From that age I also started to experience pains in my knees my parents were eventually told after no diagnosis could be made that I was an attention seeker. This was certainly not the case I was completely the other way.

I hope you've had a chance to look at the listed specialists and hope that there is one in your area. I am lucky I live in Kent and we have a fantastic haematologist at Canteberry hospital and an amazing rheumatologist at Margate. In saying that I have been passed from one specialist to another for many many years to finally arrive at this point. I have been diagnosed with everything from ME, anxiety, I BS, migraines, growing pains and attention seeking to name a few. I suffered with Endometriosis before having a complete hysterectomy, I have lupus, Sjogren's syndrome, fibromyalgia, prolapsed discs,

I also have issues with my heart that causes palpitations and a low heart rate I've been in and out of hospital this year and I'm now waiting for a pacemaker. No specialist has been able to tell me the underlying cause of this condition. These heart issues are unrelated to a genetic condition which basically causes me no problems except with certain medication (it's called Long QT Syndrome).

All this information does not help you with your diagnosis but what I hope it does is explain to you that you are not alone in experiencing a strange variety of symptoms. Continue with your search, because you will get there hopefully much quicker than many of us did - due to advancements in science. I wish you the best of luck and look forward to hearing from you soon 💋

Misg profile image
Misg in reply to WendyWoo50

Hello, I just read through your message and thank you so much for sharing your experience, your message has helped me alot!

I had not heard about alot of these conditions until the last two days and it just reinforces the fact that there are different things that can cause these issues in different areas of the body and I should definitely look into it.

It must've been very frustrating not getting the correct diagnosis for so long with all those symptoms. I had never heard of Long QT Syndrome hope you are feeling better? And I also hope you hear something very soon regarding a pacemaker.

Thanks so much for the advice and sharing your experience it has helped so much! I wish you all the best and have a great day!

WendyWoo50 profile image
WendyWoo50

Ur very welcome. Keep in touch and let me know how u get on. I wish u all the best. Have a lovely bank holiday weekend. Love Wendy 💋

Misg profile image
Misg in reply to WendyWoo50

Hello, sorry for the late reply. I have been to the doctors just waiting to do my blood test but not for APS or Lupus yet but to see my kidney function, thyroid, Liver and others things first and see if everything is fine first plus have also had a 24 hour ecg test so just waiting for the results now. Hope you are well?

blizzard2014 profile image
blizzard2014

Sjogren's can cause the liver issues. APS, high blood pressure can cause the splinter hemorrhages as well an inflammation of the heart valves. I have a lot of splinter hemorrhages popping up these days that I never noticed before. Pain can be from reduced blood flow or micro-clots. It's funny because I have been sickly all of my life and just put it down to being a weak man. I stopped working physical jobs for a cushy driving job because of it. Then I had the blood clots and discovered all of these weird medical issues. I was recently shown to have a moderately enlarged right heart that I have no idea how it got that way and also POTS-like symptoms with extremely high blood pressure, but only when standing up and in the heat. I also have fatty liver, elevated liver enzymes, as well as a mildly swollen liver. You could be having those symptoms also from the fatty liver. I don't care how much they downplay having a fatty liver, it is a serious condition that can eventually lead to liver failure in some people. I know someone who died of it and never took a drink in their entire life. Just something to think about. Doctor's are stupid to brush that off as the cause of some of your problems. But so many things can be going on. I went through a not of needless procedures looking for the cause of my shortness of breath and feeling unwell when standing and all it was down to is high blood pressure. Also, check your blood pressure within a minute of standing up a few times a day to see if there are any changes when you stand. APS can also go along with different dysautonomia issues. I hope you find some answers.

Misg profile image
Misg in reply to blizzard2014

Hello sorry for the late reply. Thank you so much for your message. They do downplay having a fatty liver and its effects and I am very sorry for your loss. I have read up on Sjogren's and do not suffer from dry eyes or mouth so can't relate to the symptoms that much but thank you for bringing that to my attention also. I am quite glad I have the internet otherwise I would've been so lost throughout all of this.

That must've been frustrating to change jobs for your health whilst not knowing yet what was the cause. I have read some peoples stories on here and they too have had to deal with so many health issues with no or misplaced diagnosis.

My blood pressure a couple of months back was a bit high for a week whilst I was having kidney trouble but in general it is alright however i do not check it while standing. A doctor did once when I was feeling quite dizzy and noticed my blood pressure dropped whilst standing but that was because of my anaemia. Thank you for that suggestion cause I do forget to check it while standing.

Again thank you so much for you message. I have gotten a second splinter haemorrhage on another finger and other symptoms and have also gone to the doctors. Hope you are well? Again thank you for your advice and suggestions.

blizzard2014 profile image
blizzard2014 in reply to Misg

Don't forget that Sjrogen's can cause symptoms in the body many years before the dry eyes and dry mouth occur. Also, some patients have very mild dry eyes and dry mouth but very terrible disease symptoms in other areas. They are learning more about this disease as it is largely underdiagnosed and under-appreciated by the medical community. Just keep an eye out for that just in case. There is an early blood panel they can do that will show the disease before you pass all of the proper antibody tests to receive a definitive diagnosis. I hope you're feeling better.

Misg profile image
Misg in reply to blizzard2014

Thank you for that. I didn't even know that, I'll bring that up with my doctor as well when i finally get a chance to see him. Is the blood panel called anything so I could ask mybdoctor for that? I am managing my symptoms well at the moment as some have calmed down quite a bit thank you for asking.

Again thank you for your advice. Hope yoy have a good day!

murphylotte profile image
murphylotte

Have you been checked for crohns disease?

Misg profile image
Misg in reply to murphylotte

Hello, I have not tested for that no. I have had a sigmoidoscopy and my bowels looked fine but this was not a colonoscopy so the whole bowel was not checked.

Can this cause liver and kidney issues though?

murphylotte profile image
murphylotte in reply to Misg

You must check with your gp then.

I can cause these problems, so as soon as they find out, you can get medication.

I hope you find your answeres soon 🙏

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