Despair and sadness

[DreamerLux]

Dear fellow sufferers, I hope you all are good and well.

I was diagnosed with both APS and Lupus almost two years ago, after my first bilateral pulmonaire embolism (PE) in May 2014. Following this first one I since then had two further PEs, last year in February and August 2015. It appear that the last one still did not disolve. Do any of you have a similar experiences and inability to disolve your blood clots?

After each of my PE I have gone back to work, but since end of last year it is increasingly difficult to cope even with 1/2 day at work. This is due to my fatigue, but worst of all are my frequent and horrific headaches. In the last few months I get them at least 3 times a month and they always last 3-4 days, always followed by vomiting, nausea,dizziness and even a diarrhoea. I am also getting more and more dizziness and black-outs. My headeaches does not seem to be related to level of my INR. Although, my INR never quite manage to get stable. Since diagnosed I have been trying so hard to fight and to keep my spirits high, but lately it is becoming harder and harder. Would some of you have some advice on how to deal with this horrific headeaches, and does it get better?

I live in Luxembourg and doctors here are not able to provide any enlightment, and like so many of you I too have a great deal of difficulties to get any or much information or for them to take my symptoms seriously.

I would appreciate if any of you can tell me how did APS effect your Life? Are you able to hold a régular full Time job?

I can't tell you what a priviledge is to be able to read all the posts on this site and to know that there are other fellow APS sufferers out there. Luxembourg is a tiny Country and I so far have not heard or met any other person with APS, and what is more, all the doctors that I have seen here, do not have any APS patient so far. I did see some specialist in France and the UK, but I regret to say that they did not Impress me or help me at all.

Thank you all in advance.

Warmest regards

Jasmina

P.s. I am currently on : Asaflow 80mg, Plaquenil 400mg, Marcoumar 12mg and Innohep 14000 injections.

[Manofmendip]

Hello Jasmina and welcome.

I'm sure that you will receive replies from many of our members on this friendly forum.

Best wishes.

Dave

[DreamerLux in reply to Manofmendip]

Hi Dave,

Thanks very much for your reply and a worm welcome, greatly appreciated.

Best wishes

Jasmina

[Manofmendip in reply to DreamerLux]

You are most welcome and I see that you are already making some friends.

Best wishes.

Dave

[Lure2]

Hi Jasmina,

We have found on this site that it is essential to find a Doctor who knows what to look for re symptoms from all parts of our body. The antibodies can attack several organs and if the Doctor do not know that we have too thick blood that has to bee properly thinned to avoid clots or microembolies, we and he has a problem.

A Rheumatologist usually is the best Doctor, as you also have Lupus, to give you the treatment that will suit your symptoms.

I know a woman here in Sweden who travelled to England and saw Prof Hughes. Even if you must travel it is your life and it is worth the money .BUT look for an Expert!!

Best wishes from Kerstin in Stockholm

[Yllek in reply to Lure2]

Hey Kerstin,

I didn't know you had come over to England for your diagnosis as well! I thought it was tough for me having to cross the UK let alone cross the continent!! x

Hi Jasmina,

I'm sorry to read what a tough time you're having. I truly understand the despair and not being taken seriously by doctors. I have seen numerous doctors who told me my problems were psychological! It was not until I found a Dr recommended on the Hughes Syndrome Website that I found the right Dr to help me. He diagnosed me and started me on warfarin straight away.

Prior to that I had all kinds of odd symptoms. I've been told I suffer, like Kerstin, with mirco-clots (microembolies) and they do not show on MRI (I've had 5 MRI's!) It takes an APS specialist to piece all our symptoms together and understand what is happening to us.

I had severe pain, numbness, tingling, blurred vision, twitching, burning, fatigue, headaches - lots of things in lots of places! I'm only recently diagnosed and after a hiccup with warfarin (internal bleed!) I'm back on it and trying to get into target so I'm hoping this will cure all my symptoms.

I have been off work since November but hoping to go back part time in a month and try and piece my life back together.

You say you saw a UK Dr - was he recommended on the Hughes Website? I do hope you get to find the right Dr to help you, don't give up and take care

Kelly x

[Lure2 in reply to Yllek]

Hi Kelly,

Actually I have never been in England. No it was a woman I know from Sweden who did the trip with her family to get the right treatment for her APS.

KerstinI

[Yllek in reply to Lure2]

Ah sorry I misread- my blurry vision today haha X

[DreamerLux in reply to Yllek]

Hello Kelly,

Thank you ever so much for your reply and your kind words.

Like you I have all kinds of symptoms, and with most of them I can deal quite well, but headeaches are the worst. They last long, always followed by vomiting, and no pain relief seems to work. A couple of months ago my hematologist told me that I should accept that a conventional medicine can't do much more for me.

The UK specialist that I saw last year was indeed from the Huges Website recommended list, at the London Bridge Hospital. I may try to see another one from the list this year.

All the best with your recovery!

Jasmina

[Yllek in reply to DreamerLux]

Where about in the UK are you? My APS specialist is retiring within the next 12 months and is based in Leeds but I would recommend him to anybody! His knowledge of APS and his caring nature was fabulous.

Good luck and keep us updated x

[DreamerLux in reply to Yllek]

Thanks very much for your message . I am not in the UK, I live in Luxembourg, and Leeds would be a little bit far for me. I wish you all the best.

[Yllek in reply to DreamerLux]

You to I hope you find a good dr to help you X

[DreamerLux in reply to Lure2]

Hi Kerstin,

Many thanks for your reply.

You are so right, finding a right doctor who understand APS is of essence, and I have been searching for the good one since 2014.

I do have a rheumatologist, but his knowledge of most autoimmune illnesses is so limited, so much so that he did not even know that APS is also called Hughes Syndrome. As for my hematologist, well he is just not much interested at all.

Unfortunately, both specialist that I have seen in France and the UK were of not much use, and the only reason that I have not lost hope in a medical profession is thanks to my GP. She is being so wonderful, supportive and compassionate.

Best wishes

Jasmina

[Lure2]

I read you are on Warfarin. What therapeutic level has your GP (?) put you on? I selftest with an INR between 3.2 - 3.8 and feel better on the higher level.

Have you done all the necessary bloodtests, for ex Thyroid (TSH, T3, T4) on a rather high level, B12, D-vit and Ferritin and also the ANA-tests which you probably have done. I have copies of everything since 2002.

Sjögrens and SLE and Thyroid are "cousins" to APS so one more reason why we should have an Expert on these illnesses who can separate them from eachother and that way find the right treatment which is so very important. Many members have both Sjögrens and APS and therefor need perhaps more than one drug.

Kerstin

[DreamerLux in reply to Lure2]

I am on 12mg of Marcoumar ( a derivative of coumarin) and also Asaflow 80mg. I do try to stay in 3-4 INR range.

Yes I did have all of the tests mentioned by you above. I was tested for Sjogrens which was thankfully négative. Beside being diagnosed with APS and Lupus since 2014, I also have the Raynauds Syndrome since my childhood.

[MaryF Administrator]

Hi there, please look at some of the names on these papers you may be able to track down a doctor in your own country: ncbi.nlm.nih.gov/pubmed/195...

Also reading further it appears there is some knowledge here: Service de Neurologie, Centre Hospitalier de Luxembourg, Luxemburg.

Failing that, a visit to the London Lupus Centre, and here is another name in France: apsaction.com/

I hope things improve for you.

MaryF

[DreamerLux in reply to MaryF]

Thanks very much for all the info, greatly appreciated.

[MaryF Administrator in reply to DreamerLux]

Let me/ius know how you get one, we aim to help where we can, keep well. MaryF

[Ozchick]

AS the others have said a doctor well versed in APS is the way to go. Did you visit the UK doctors "cold"? ie: without a letter from your doctor or scans and tests? My doctor here (Australia) sent a long email to Londonbridge Hospital and told me to have my history written out so I wouldn't forget anything. Although I got nothing new from my visit and had a number of blood tests back here that were recommended and then forwarded to London it seems my treatment is spot on. Sometimes the doctors not familiar with APS can be a bit precious and offended if you are still "sick" in spite of their efforts. It takes a bit of patience and doggedness to stick to your guns and keep going.

[DreamerLux in reply to Ozchick]

Hi, no I did not make my journey to the UK without preparation.

I had my report from my hematologist, a huge range of blood test done already in The University Hospital here in Luxembourg prior to my UK visit, and afreshly done CT scan. A consultant at the London Lupus clinic was not much interested in studying any of these, did not take much what I told him and all he wanted to test whether I have APS and Lupus, despaite being told that I have being diagnosed by there différent hospitals already in Luxembourg and France. I made that trip just after my 3. PE, bearly able to walk, and had to have a friend come with me, and consultant in his follow up report which was of no use to me, even wrote I looked well.

I am sure that I will find a right doctor and that things will improve.

Many thanks for your reply.

Jasmina

[Ozchick in reply to DreamerLux]

Totally different experience from mine and no wonder you are disheartened. I hope you find the right person soon.

[Fusch]

Paul Holmes is a neurologist from guys/St Thomas' works closely with Beverly Hunt and is an expert also on headaches.

[e-mail]

[DreamerLux in reply to Fusch]

Thanks very much, I will certainly check if he sees a private patients.

[Fusch]

londonbridgehospital.com/LB...

[Kbjp]

Hi Jasmina,

I am so sorry you feel terrible and can't find relief! I can't say too much about headaches, although my best friend here in the US has chronic migraines, and she has found relief through acupuncture, as well as Botox.

I had a rather severe bilateral PE in November 2014. Some of my clients did not resolve, but it was explained to B that they have now turned into scar tissue. Because I have that scar tissue, it means I am more likely to get a PE in the future. Therefore being properly coagulated is very important. Over a year later, I still have not recovered my breathing. Part of that is my own fault, for lack of trying to do exercise. I felt so sick for a long time, and now that I don't feel as sick from that, I have been suffering with terrible joint and body pain. Now that is being treated and is starting to feel somewhat better. Some of my lung tissue was permanently damaged and will never be the same, but thankfully I was not an athlete before this! I have been told that doing more exercise will help improve my lung function.

One thing that can happen as a result of scar tissue in the lungs, is pulmonary hypertension. I am not sure if that can cause headaches? Basically, the heart has to pump the blood harder to get it to go through the lungs, and it puts a strain on the heart. I had a right heart catheterization in September, and they found that my pressure was pretty high, but not high enough to be considered pulmonary hypertension. This was after I had an incident where I almost passed out, and was continuing to have trouble breathing almost a year after my PE.

Anyway, good luck to you! Keep us posted.

Karin in Boston

[DreamerLux in reply to Kbjp]

Hi Karin,

Thanks you so much for taking time to reply to my post, and for sharing your experiences, most informative and helpful.

My first PE was pretty severe too, and with a lots of complications that at the time kept me in the hospital for a month, and apparently left scaring.

I expect that may be the reason why my chest pains never quite gone away, especially on the left side. Your explanation certainly make so much sense as to why I also had two more PE last year.

I have been monitored for any sign of pulmonaire hypertension, so far so good.

Wishing you a wonderful weekend.

Jasmina