Under investigation for autoimmune conditions. Years of suffering

[Poppyfields65]

Hi. I've just had a load of blood tests done and I noticed one of them was Antiphospholipid Antibodies so I thought I would introduce myself and see what you think about my symptoms. 

I've been having health problems for sometime now and like many people still waiting for answers. 

I'll try and keep my story as short as possible.  

Just over 6 years ago my symptoms changed from mild & intermittent to chronic and more severe - fatigue & achiness, 24/7 dizziness, vertigo attacks, disorientatation, brain fog etc. 

About 18 mths ago I suddenly deteriorated and started adding symptoms and intensity. 

Some symptoms:

Fatigue/ muscle aches/weakness (debilitating) 

24/7 dizziness. Isolated vertigo

Constant pins and needles in both feet, legs, hands & arms, intermittent in chest, neck & face (all worse in heat,) intermittent numbness, shooting nerve pain etc. 

Sensation loss in limbs

Sensitive to sun/lights/screens/weather

All over abdo pain

Chest pain

Breathlessness

Feeling of pressure on chest

Nausea

Fainting

Feeling of going to collapse

Brain fog

Confusion/ disorientatation 

Migraine and chronic headache

Weight loss

Some joint pain

Malar rash... Intermittent 

2011 - I was diagnosed with vestibular migraine and nystagmus (videonystagmography tests) and treated with meds for the 24/7 dizziness and isolated vertigo attacks. The meds help keep me on my feet but I still have 24/7 dizziness to some degree everyday but it controls the full on vertigo attacks pretty well. I'm currently on 96mg daily of Betahistine. 

2015 (Jun) - Malar rash diagnosed as rosacea (no biopsy.) 

2015 (Sept) - Diagnosed with microscopic colitis and treated with corticosteroids for 5 months. After 2 weeks on the corticosteroids my dizziness completely  disappeared for the first time in 6 years! Hallelujah!! But, on the dose reduction in month 4 it started coming back and remains now. (Still on 96mg Betahistine.) I've been off the corticosteroids since mid Jan. 

2015 (Dec) - Diagnosed with vitamin b12 deficiency- Weekly injections.  

I was referred to a neurologist last October cos of the dizziness/steroids thing and ongoing pins and needles etc. I had the appointment last month.

The neurologist, after his examinations (I failed many of his test)  & consultation believes I have an underlying autoimmune disease and/or metabolic/genetic disorder causing all my symptoms and the b12d. He spoke about Lupus but he said lots to rule out/in . 

Last year I had 2 positive ANA/homogenous pattern blood tests in March and June. (1:160 & 1:320. ) ENA panel both times was negative. 

I've had more blood tests for a load of things including repeat ANA & ENA, antiphospholipid, vasculitis etc. Waiting results. 

Waiting for mri of brain and spine, repeat nerve tests (last done in Jun) and ophthalmologist. 

I used to be a very fit and energetic person and my life has now totally changes. 

Thanks for listening, I notice there are some very knowledgeable people here and I welcome your input. 

[Poppyfields65]

Hi,  I'm from London originally but living in Spain. My Ferritin is a good level and I take 1 spatone everyday as part of my b12 regime.  They still haven't tested my vit D and I have given up and just ordered a test kit this week from UK NHS.  My thyroid has been thoroughly tested aswell as anti bodies. But I will ask for it to be kept an eye on. I believe the full panel of aps antibodies was requested but I can double check when I get the results.  I'll have a look at all the links. 

Thanks.  X

[MaryF Administrator in reply to Poppyfields65]

Hi, I  will alert a friend of mine in Spain to respond to you:  I also enclose this list for you:  apsaction.com/   There is a good supportive network in Spain and many members are on here also.   MaryF

[MaryF Administrator in reply to MaryF]

Be also aware in terms of your microscopic colitis that a lot of us with Hughes Syndrome/APS are sensitive to gluten, it is possible to have gluten intolerance without fully blown coeliac disease!   ncbi.nlm.nih.gov/pmc/articl...   MaryF

[Poppyfields65 in reply to MaryF]

Hi.  Yes.  I did have bloods for coeliac a year ago and gastroscopy biopsies (negative.)  I gave up gluten for a while with no change but there was a serious amount of things going on really to work it all out.  In the last batch of bloods they have RE tested for coeliac so I had to be eating gluten.  I will probably go gluten free again as soon as I know they don't want to rE test.... Again!!  I have Alessio Fasano's book.  "Gluten Freedom."  and have watched him speak at conferences on YouTube.  Very interesting. Thanks.  

[MaryF Administrator in reply to Poppyfields65]

bmj.com/content/345/bmj.e7982

MaryF

[Poppyfields65 in reply to MaryF]

Yes.  Alot of people on the mc group I'm on have given up gluten with success even though they aren't coeliac,  others not so much.  I'll try again when I know they don't want to repeat test bloods or the gastroscopy as you have to be consuming it not to give a false negative for coeliac. The whole family will go gluten free this time so that I can keep baking! 

[MaryF Administrator in reply to Poppyfields65]

Hi and welcome, where are you located? You seem to be accumulating good knowledge along the way which is the way to be with autoimmune disease. B12 deficiency can cause real problems, I am glad to hear that you are having treatment, presumably they also looked at your iron, and your vitamin D this is very important. A positive ANA will indicate Lupus alongside your Malar Rash. 

 Another thing to look at beyond Hughes Syndrome APS, is your Thyroid, this is frequently missed due to the awful TSH test, many people fall through the net and are told they have 'Fibro' in many cases and are left with untreated thyroid problems. The other tests which need doing beyond the TSH, are usually NOT requested by the doctors in the UK, but here is a list of them, (I do mine privately): thyroiduk.org.uk/tuk/testin... Thyroid UK have the NHS's choice of forum, they are very good! Their list of symptoms is also useful: I enclose both, Hypothyroidisim and Hyperthyroidism: thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

Regarding the tests for Hughes Syndrome/APS, these are the recommended ones: hughes-syndrome.org/about-h...

Here are the related diseases and also symptoms, but do have a good look around the charity website which carries some good information: hughes-syndrome.org/about-h...

hughes-syndrome.org/about-h...

As often written about by Professor Graham Hughes' himself, the common trio of disease is Hughes Syndrome/APS, Sjogrens Disease and a Thyroid problem.

Best of luck with your testing, be patient and also carry on being a good detective.

MaryF

[InSpain in reply to Poppyfields65]

Hi Mickyaela

I am MaryF´s friend and I too live in Spain.  I dont know if you know that there is a Spanish organisation for people who have APS.  I have posted the link for you.  It is very informative and always useful to refer to or show to the medical profession on occassions:

safespanya.org/

There is also a Spanish Facebook page with over 500 members which offers very good support too:

facebook.com/groups/sdme.an...

From my personal experience I have found that the best Doctor´s to consult here are Medicina Interna, Doctor´s who have specialised in and/or have a special interest in Autoimmune Diseases.  Unfortunately, not all, but most Neurologists that I have met in Spain have a poor understanding of APS and that may be why you failed most of the tests that you were given. 

Insist that you have the nerve tests repeated (emg electromiograma).  I was fobbed off repeatedly and later was diagnosed with Sensorimotor polyneuropathy of the fine nerve endings in both legs that was caught too late.  If left untreated, as in my case, it can be very disabling and cause problems walking, the pins and needles/electric shocks you describe and chronic pain.  It has left me walking with a stick.

I would ask for a bone scan if I was you (densitometria osea) and justify it by saying you have had to take steriods as part of your treatment and want to know the condition of your bones.  If this test shows the beginnings of osteopenia/osteoporosis they will then automatically test your vitamin D levels and treat you accordingly.

When you go for consultations always ask for a written copy of the consultation and any diagnosis/treatment plan that has been discussed. (Informe Clinica)  It is your right to receive this after each consultation that you have.These may be useful for you to refer to in the future, or to show to other Specialists.

If I can be of any other help don´t hesitate to contact me.

All the best from here InSpain xxx

[MaryF Administrator in reply to InSpain]

I knew you would help, thanks, keep well, your old mate, MaryF

[Poppyfields65 in reply to InSpain]

Hi.  Thanks very much for the links.  I will have a look. 

I was referred to medicina interna by the gastroenterologist as he said I had systemic symptoms. My GP had already done the lupus screening test... ANA and was still awaiting the resul.   I had my first appointment in May 2015 with Medicina Interna. Near the end of the consultation I requested the blood tests for Antiphospholipid because I had read the symptoms of it.    She asked me if I had ever had any blood clots and multiple miscarriages.  I said no.   She then said I didn't have it and refused the blood test.  She said I had had sufficient testing for coeliac disease even though I had only had the tTG IgA and not the other 3 or 4 tests available.  She didn't seem to know about them or coeliac or none coeliac gluten sensitivity. She had the ANA result which was positive but she didn't pursue any further lupus investigations as the ENA panel was negative. She referred me for the nerve conduction test (the constant pins and needles had started 2 weeks previously.)  I had the test in June 2015.  She requested that I have repeat ANA and ENA panel blood tests in June.   I was called back to see her in Oct. She said the nerve conduction tests were all OK,  no problem.  The repeat ANA was still positive but the ENA still negative. She concluded that I did not have a systemic auto immune disease and was signing me back to the gp.  I asked that she refer me to a neurologist as the doctor who did the nerve conduction test said it only tested the peripheral nerve system and not the central nervous system.  By the time I had the tests in June the pins and needles had spread from just in my hands and arms to my feet,  legs,  chest,  neck and face and the doctor doing the tests indicated that problems with the CNS may need to be ruled out.   During the summer the intensity of the pins and needles was horrendous,  24/7.  She eventually agreed when I also pointed out to her several times that my 6 years worth of dizziness had disappeared since starting corticosteroids on 1st Sept for the inflammatory bowel disease.  I was less than impressed with her. But I know my GP would have referred me anyway. 

I waited 5 months to see the neurologist and saw him in March. 

When I say I failed his tests.  I mean he found some problems... I fell during the romberg test for example.  The sensory and vibratory tests I couldn't feel anything,  he found I am hyperreflexia and a few other things.... Indicating that there are potential problems.  

He has requested repeat nerve conduction tests which I was told could be a 7 to 8 month wait.  I had an ENG before and that is what he put on the form again. I'm not sure if I also had an EMG at the same time or not and I'm not sure this time round.  He also requested an MRI of spine and brain... 2 to 3 months wait,  an appointment with an ophthalmologist and I've already had the blood tests done including the antiphospholipid antibodies which I only noticed he had ticked on the form when I got home!!!! So I think you will understand that I do not want to go back to the internal medicine dept.  

He didn't mention antiphospholipid to me... Only lupus.  I haven't had any tests except for blood of antiphospholipid and I don't know what the tests are anyway.  

I suppose if the APS blood test came back positive he will refer me to the relevant specialist. But at least he recognised it as a possibility which medicina interna didn't!! 

I have copies of all my blood test results and "informes/hoya de anamnesis"  from the gastroenterologist,  internal medicine,  dermatologist and neurologist.  My GP has typed them all up except the neurologist one as I haven't been to see her yet.  Plus I have my colonoscopy/gastroscopy and pathology results.  

What I am missing and thank you for reminding me is the results of the ENG, abdo ct scan and chest xray .  Maybe my GP can access these or I can email the hospital. Once I have the ENG report I can see exactly what was and wasn't done. 

When I had the ENG she kept telling me to expect alot of pain, but I didn't feel any really.  The neurologist did record after his tests last month on the informe sensory and vibratory loss. 

I feel finally like someone is listening to me. 

Sorry,  this must be very long now.  I hope it makes sense. 

Thank you very much for your help.  Xx

Ps.  I do take my file with all my reports and results to each appointment. 

None of the doctors have tested my vit D so as I can't be bothered to keep asking I ordered a test kit from the UK NHS which arrived today.  So I will do that and send it back!! 😁 

[MaryF Administrator in reply to Poppyfields65]

And just to say, with regard to my limited knowledge of the Spanish health care system:   The law in Spain says that nobody has to wait more than 3 months to see a Specialist. If you have not been seen, then the Spanish Health System pay for a private consultation. The same goes for operations etc.   I hope you get some support in the Spanish groups also.   MaryF

[Poppyfields65 in reply to MaryF]

Hi.  Really?  I didn't know that.  It's quite normal here in Huelva  governed by the Andalucía Health Authority  to wait more than 3 months for a specialist appointment.  Do you have a link you could send me of where that is stated?  

Thanks. 

[Lure2]

Hi, You have got  very good support and advice from MaryF!

I have primary APS and I recognize several of your symptoms. 

I just want to tell you that we have found here that the Neurologists usually do not "get" what APS is about  -  too thick blood that has to be anticoagulated at a rather high INR (if you use Warfarin) and also be at a stable level.

I had microembolic as to my neurological symtoms and they are not usually seen on an ordinary Scan of today. I have today an INR between 3.2 - 3.8 and feel best at 3.8. I selftest.

Best wishes from Kerstin in Stockholm

[Poppyfields65 in reply to Lure2]

Hi.  Thanks for your comments,  I guess if the blood tests come back positive he will refer me to a rheumatologist.  If negative I will ask him and my GP for a referral anyway.  If necessary I will pay to go private.  

I was referred to a neurologist because of my growing neurological symptoms and the fact that the dizziness resolved whilst taking corticosteroids. 

He is in a reasonably thorough ruling out process currently. 

Forgive me but I don't understand at all what you mean in your last paragraph about micriembolic,  the INR etc and the scans?? 

[Lure2]

I can understand that as I wrote the wrong word. I meant microembolies.

 I had a lot of neurological symptoms (they were TIAs) and wes better with Baby-Aspirin for some time but after an operation of Hyperparatyreidoses when they took away one of the three glands in my throat, I was worse with very high bloodpressure and I was suggested to try Warfarin. I did not want to have that drug so I waited and after I had read "Sticky Blood Explained" by Kay Thackray I understood that I really had APS and I then started Warfarin.

I was remited to the best Specialist we have in Sweden of Balance-issues and he said it was microembolies I had.  I have all three antibodies in high titres since 2002 (a high risk of tromboses) but they have never during those years  seen any clots om me.

Anyway when I started Warfarin I was better and in a couple of months most of my neurolgocial symptoms had disappeared for good. At first I had a lower INR and not so stable but then my Hematologists agreed to let me have a higher INR and then I have not had the symptoms back. I am Lupus Anticoagulant but I selftest since 4 years as it is the only way to contol my values and keep them steady. I test every second day and monitor myself my INR and Warfarin but recheque at lest every 2 - 3 month at the hospital in the vein. 

I have now Pulmonary Hypertension  (a rare symptom of APS and perhaps due to the very high bloodpressure I had from time to time) and also  two leaking heartvalves but I feel fine and try to exercise every day and take a walk of at least 30 minutes. 

Hope you understand better now!

Kerstin

[Poppyfields65 in reply to Lure2]

Hi.  When you were told you had microembolies. How was that diagnosed?  With the 3 Antibody tests for APS?. 

My 6 years of 24/7 dizziness disappeared whilst on corticosteroids for Inflammatory bowel disease. This is one of the many things that has prompted the neuro to run all tests he's ordered so far.  

Thanks.  

[Lure2 in reply to Poppyfields65]

I was already diagnosed in 2002 with all three antibodies in high titres and symptoms also. They have not taken so many tests for clots etc. Actually I do not know if it is more than one as I have forgotten about it and have not looked for it just now.

The Balance-Specialist ( in 2008 probably) could see it on examining my ears and balance etc and I had something wrong with my  left side of the inner or middle-ear. Several ofthalmologhes examined me. The eyes/ears/ balance act together and the vessels in the ears are so exstremely thin so it need really good anticoagulation. 

I have not tried  corticosteroids and I have not had inflammatory bowel disease. Know nothing about that.

Kerstin

[Lure2]

INR is the value how thick the blood is. We only messure INR when on Warfarin anticoagulation.

 As you said earlier you are going to see a Specialist (most likely a Rheumatologist) and I hope you do that as that would make you feel much better when you are properly treated. That Doctor knows what to look for re symptoms and knows that we need to have our blood thinned to feel well.

Kerstin

[Poppyfields65 in reply to Lure2]

I saw 3 ear specialists and a neurologist 6 years ago and in the end a vertigo specialist/ Otoneurologist who diagnosed me with vestibular migraine in 20101 after over a year of constant dizziness.  I had all the videonystagmography tests,  calorific  etc and other specialist vertigo and balance tests. But anyway as I said for the first time ever the treatment for IBD inadvertently resolved the dizziness whilst on the corticosteroids so hopefully the neurologist and/or future specialists will have better clues now as to what is the real root cause of the dizziness at least. 

 Corticosteroids as I'm sure you know suppress the immune system and are a strong anti inflammatory.  

It's  the diagnosing bit that seems to be difficult and time consuming. I'm symptomatic of many conditions it would appear now these past 18 months or so crossing potentially many specialist areas.  The neurologist has to rule out diseases from his own specialist area due to my multiple neurological symptoms and also due to prolonged undiagnosed and untreated b12 deficiency subacute combined degeneration of the spinal cord for instance. So once he has narrowed it down a bit by the tests he's doing now I will be referred on to the relevant specialist area(s) where required and/ or stay with him if appropriate. It all takes so long here on the national health system. 

I am a bit fed up to tell you the truth!  But I know there are people much worse off than me. 

Thanks for your all your info and best wishes. X

[Hidden]

Recommend 'googling' Lyme Disease Spain....i just did My APS specialist/Rheumatologist/US works w/both. She first diagnosed me w/APS when i went to her because my 'symptoms' related to Lyme did not go away despite months of treatment...apparently my Autoimmune /APS must hve been triggered..long story she treated me for APS & grateful I am feeling well /she monitors my APS every 90 days & tests for Lyme 1year.   Lyme Disease is an epidemic ...some researchers believe ticks spreading due to changing climate. And over population in previously 'wilderness'......Lyme and Autoimmune Disorders can mimic each other.     Spain apparently has a type of Lyme tick...who knew!      Hope this helps

[Poppyfields65 in reply to Hidden]

Thanks.  Will do. X

[Lure2]

 I wonder why you have got chest pain and breathlessness. Have you had high bloodpressure the last years? Try to keep it down and steady. 

I suggest you read "Sticky Blood Explained" by Kay Thackray that I wrote about earlier today. A lot of different symtoms. Probably you have got more than APS.

Good Luck but do not give up before you have came across that Specialist you need! 

You have got several  very good advices from Mary. She knows a lot about autoimmun illnesses and she is very well-informed and wise.

Kerstin

[Poppyfields65 in reply to Lure2]

I've never had a problem with blood pressure. Chest pain and breathlessness are both symptoms of b12 deficiency but also of some of the other conditions he is testing for.  I'll take a look at the book.  I won't give up.  I nearly did a month before I finally got the b12 deficiency diagnosis but I'm back pushing away now.  I won't be beaten!!  Many thanks.  X