Before diagnosis

[Hollylewis]

My Drs are testing me for Hughes.. I am terrified.. We're all if you perfectly healthy before diagnosis or were there warning symptoms all along?? So far my only symptom is a rash on my legs

[MaryF Administrator]

Firstly, hello and welcome, secondly good on your doctor, you have a good thorough one there. Hughes affects people in different ways, not everybody is extremely ill, some are just a bit ill. If you test positive.. and your history also adds up, we can help you a little more.. one other clue is dreadful migraines as a teenager. Please try not to worry too much, some never mind they even have this! I am guessing that your doctor thinks you rash maybe something called Levido Reticularis... some have this, but not everybody. Keep in touch adn we will help you as much as possible! Mary F x

[Hollylewis in reply to MaryF]

I am so scared I am not able to function.. I didn't really have migraines as a teenager just getting dull ones that started three months ago.. What is the prognosis and do alot of people die

[MaryF Administrator in reply to Hollylewis]

if you have it, you may just need aspirin, I know this sounds all very scary... but lots of us are on here, I myself am only on aspirin, aged 47, three lovely children... I live a full life etc. It is safer to be diagnosed rather than not so, and you need to make sure you take somebody you trust along to your next appointment.. as any ailment diagnosed can be very stressful... So if you do have this... and a big 'if' here, not wishing to jump the gun, as your GP seems to be doing everything right... is making your sticky blood a little thinner, and I will add that we are all ages on here. And if you do... you can tell us where you are located, so we can help your GP get you the best consultant to refer to. Best wishes... keep in touch and we will help. Please do try not to worry.. I am guessing that you will be back for your results soon. Mary F

[Hollylewis in reply to MaryF]

I just feel like I am a ticking time bomb and I am so scared.. I don't want to die... I am trying to think of anything that may have been signs all along

[MaryF Administrator in reply to Hollylewis]

Well, you are not... can you ring up your surgery and a relative or friend, it is not good to be sitting feeling this stressed! Have you had the blood test done? I have had this disease for decades and only just got diagnosis fairly recently.. I am still here and very much full of beans. Please take some time, and if you can't see the GP, see the nurse and see if they can support you through this. Mary F x

[Hollylewis in reply to MaryF]

I have had the lupas anticoagulant test done but she didn't order the others and I am nervous that she didn't.. Is is rare to have this? Do you think I would have had more symptoms by now

[MaryF Administrator in reply to Hollylewis]

This all sounds fine, and they will support you, it is fine to tell them how stressed you feel! and this is part of the testing, what they have done so far. This is a very supportive place to land! Mary Fx

[Hollylewis]

I just don't understand how this disease progresses and if I should have maybe had more symptoms from it ongoing

[MaryF Administrator in reply to Hollylewis]

One step at a time, let your GP feed back results and get you the right referral, then you can tell us where you are located and we can guide you a bit more. Please relax, the disease is different for all of us. Mary F x

[Jade]

Do try to stop worrying too much as yet you do not have a diagnosis of anything. You are in fact very fortunate to have such a good GP who is suggesting testing to you and not the other way around. Many of us fought for decades for those tests.

With regard to life expectantly as APsnotFAB said we will all die at some point. I am 50 and have had my symptoms since primary school. Though I am not full of beans I never have been, but I have 3 children, and run a business.

It sounds to me if you do have it you have the best GP to support you. X

[jessielou]

Hi Holly,

Welcome and glad you found us hon, please, please try not to worry!! Wait and see what results are, one step at a time, we are all very different in symptoms, I like Mary have had symptoms since teens and only diagnosed about two years ago after I asked for the tests, i'm nearly 50, You have a very on the ball doctor, who may be looking to rule things out. Do you have someone to go with you when you get results? Maybe tell them how worried you are, may be easier if you can share it with someone else.

We will help all we can, we're a friendly bunch on here.

Sending gentle hugs, take care love Sheena xxxxx

[Hollylewis in reply to jessielou]

The IGM was positive what does this mean?? LA and Anticardiolipid were neg

[GinaD]

Holly, wish you lived in West Virginia and I could meet you for coffee somewhere. I remember when I was first diagnosed I was at first so relieved to know what was causing my strange feelings. After a week or two, even though my new meds eliminated the mini strokes and TIAs, I began to reflect on the consequences of having a chronic ailment. I worried, I researched, and I spoke gloomily about how our savings plans should not assume I would out live my husband. Time passed. And sometime between then( 2000) and now having Hughes just became my new normal. My meds ( warfarin) work wonderfully well. I have adjusted to the diet, I have a great hematologist, and, compared to friends my same age, I am probably actually healthier then most. One of my friends predicts I'll outlive everyone else our age because having Hughes has given me the motivation to follow those healthy life style habits that we all should, but most do not, follow.

Take it one day at a time, and wait and see.

[GinaD]

And after reviewing you query I see I did not answer your question. My blood tests were ordered after a visit to the ER and the subsequent MRI showed that what I had assumed were just " panic attacks" we're actually mini strokes and TIAs.

Hind sight is 20/20 and looking back I can point to various benign things that are now associated with Hughes and say, " See that. I had that.". But some of these early symptoms are so widespread and so benign that no one can as yet say they definitively symptoms of Hughes. What " symptoms" am I talking about? In my case, tinnitus, low blood pressure, head aches. You know. Normal stuff. That everybody has. And no, most people who have tinnitus, or low BP or head aches, alone or all 3together, do NOT have Hughes.

In the 1980s I had a series of clots in my leg. I was put on warfarin and the clots went away, I was taken off warfarin and almost immediately the head aches began. One doc ( a young ophthalmologist) suspected Hughes and asked my GP to run a cardiolipin antibody test. I arrived at my GPs office with that note and my THEN GP derided that young " know it all doc straight out of med school" and did not run the test.

After years of head aches, fear and panic attacks, 3 ER visits 3 MRIs and a consult with a specialist who was 5 hour drive away I finally got my blood test and my diagnosis.

My story about how hard it is to get a diagnosis is quite common on this site. SO again Holly. It sounds like you have a wonderful GP.

So if your doc is running the tests to eliminate this or that possibility you should rejoice! The sooner diagnosed the sooner, and more effectively, treated. The vast majority of docs do not think about Hughes soon enough. Your doc is being laudably thorough. But just because he is looking does not mean you have it. Kind of like getting a mammogram or a colonoscopy. Hes just looking, and at this point, one positive IgM may not be any more significant then one fibrocystic bump on a mammogram. Something which should be explored further, but quite likely NOT indicative of disease.

( I once had dozens of cysts. None of them were cancerous. I started eating more fish and they all went away.)

[Hollylewis in reply to GinaD]

Thank you for your help. I have never had a clot but the panic attacks and weird migraines happened out of the blue.. One migraine left me with weakness in my face for a few mins.. I am terrified of blood clots always have been even before hearing all of this.. I am just so scared and I am finding it hard to get through the days because of the unknown.. My IGM was borderline is that a good sign?

[GinaD]

Can be. Rheumatological factors and blood " stuff" is incredibly complex. But my understanding is that there are so many redundancies in our bodies, and our immune responces are so complex, that it is common for this or that measurement to be a bit off. That's why most diagnoses based on blood tests require more then one positive separated by a period of months or weeks, and often a series of correlating positives coupled with symptoms. Again, if you have a positive cardiolipin antibody test at one time, as my child had when the pediatrician ran her blood values, that does not mean you have the illness. It means you could have it, . . . Or not. ( some patients are sero negative.).

In the mean time, while you ware waiting for more info, try to avoid sitting with your legs all cramped up. Drink water, and ask your doc if you might take a baby asprin a day ( I'm assuming you aren't on any meds which would conflict with asprin?) and try and exercise a bit every day. Something which helped me with those panic attacks? Lay on the couch under a nice warm blanket with a cup of herbal tea and watch the most boring channel you can find. My boredoms of choice were the shopping channels. I suspect the Golf Channel might also be a winner. Or fascinating shows work as well. Depends on whether you think you need sleepiness or distraction. This might be the time when running up a movie on demand bill might be justified.

Gina

[JoyceyMee33]

Hi Holly. Please try not to worry too much. I was born in with the blood condition but was totally unaware that I had it. When I was pregnant with my first child in 1955 I developed toxemia and spent a long time in hospital prior to the birth. When my son was born he weighed a healthy 9lb 1oz, so no problem there.Now something as simple as low dose asprin is prescribed to deal with pregnancy problems. I have had migraine on and off during my life. In 2002 I had a severe DVT after which I was diagnosed with Thrombophilia and was presribed life long warfarin. Migraines are now a thing of the past, I fly long haul to Canada to visit my daughter. I will be 80 in May next year and don't intend cashing in my chips any time soon. I know it is difficult to feel positive ,but as others have said you have a Dr who is on the ball and is taking steps to protect you. Most of us have unknowingly lived with the condition for most of our lives. So you have the advantage (if there is a problem) of the medical profesion now being aware of the syndrome. Once again trust your doctor, try to relax worring changes nothing. Keep us informed of you progress. And enjoy Christmas.

Love & Hugs Joyce