My A.P.S. journey

[dexters]

Hi i am a 62 year old male from South Wales UK tee total ex smoker mild COPD dodgy back otherwise healthy. Retired Jan 2015 walked Dexter the whippet 6 days a week potched in garden drive around Brecon etc. had some jobs done on house wife and i generally having fun.

Sept.2016 started having head aches wife dragged me to Doctor BP up monitored for 4 weeks put on Amlodopine after 5 weeks felt strange changed to Indapomide (generally slowing down).

March 2017 had a fecal impaction Doc. stopped BP meds Bp ok feeling very fatigued.

June 2017 saw a bum Doc. had a colonoscapy small polyp removed all ok discharged.

Back to GP. he sent me to private Neurologist query Myasthenia Gravis.

End June 2017 saw Neurologist very nice man he say not neurological had head and torso CT scan non remarkable he said microcytic anemia ? sent to Heamatologist Swansea 20 mile away a long way being the way i felt .

July 2017 saw Haemotologist did blood tests awaiting follow up apointment .

Aug. 2017 had jaw and chest pain went to A & E (emergency hospital) Hypertensive crisis BP 225 over 116 had ECG bloods sent home with Felodopine and follow up appointment.

Aug. 16th 2017 went clinic admitted to hospital from clinic heart thumping under stress , on ward put on asprin, beta blockers heprin told might have to have stent ,stress echo showed area of concern so had a angiography was told all within limits jaw and chest pain must be stomach take Ranitadine and sent home.(wife over heard consultant saying Haematologist must sort this man out)

I am now very fatigued, muddled and achey muscles

Sept. 2017 saw haematologist he said anemia of chronic disease possibly Polymyalgia put on steroids. Head was clearer, but as my wife put it my head was dragging my body around i thought i could wash the car , did one side and slumped in a chair a trembling mess, GP weaned me off steroids Nov. 2017.

In the meantime haemotologist asked an endocrinologist for opinion he said not me (without seeing me) might be Neurology he wrote to one who would not see me as already seen one, so phone call to original Neuro.secretary he would see me.

Dec.2017 saw original Neuro. he not happy i am still unwell Quote "the other docs were lika a bunch of ******* students not Neurological , needs endoscopy stomach, addisons test and see Rhumatologist to rule out Polymyalgia "

Jan. 2018 saw Haemo. he say inflammation ok now so discharge me problem not in blood .

We left there VERY fed up still have symptoms

which are General fatigue, jaw & chest pain muscle fatigue, joint aches, shaky if do anything too quickly , ringing in ears, Muddled following conversations,cant think how to get to familiar places, mislaying things, constipation.

OK so back to GP saw GP not usual one he asked have you been tried on antidepressants, my wife nearly bit his head off , she worked in mental health for a number of years HE IS NOT DEPRESSED and sited reasons for this.

OK saw usual GP he said it could be M.U.S. (medically unexplained symptoms) this is a medical term for we dont know what is wrong.

We told him we need to find a consultant that is more general medicine to look at a wider picture. Found a consultant locally a stroke doctor who has a special interest in complex multi-pathology disorders.

Feb. 13th 2018 saw him privately he wanted head MRI and lots of blood tests , MRI showed solitary area of high signal in right temperal lobe so off to see another Neurologist .

March 2018 saw Neuro.he said perivascular space repeat MRI in 9 months and do memory tests for baseline and rule out alzheimers .

We then went back to NHS as spent quite a bit on private tests.

Memory test ok not alzheimers or dementia

Because we went back to NHS there seemed to be a comunication problem had bloods for stroke Doc. done in May 2018 .

May 2018 saw Rheumatologist not polymyalgia discharged

Awaiting appointment with stroke Doc.

July Aug. 2018 new symptoms plantar fascitis, tennis elbow, sore thumbs, splinter hemorrhages finger nails, red testicles.

Nov. 22nd saw stroke Doc. did bloods on exam spotted rash on leg (Livedo Reticularis) hopefull of diagnosis.

Dec. 1st Saturday had half mile walk, on Sunday could not bear weight on left leg pain in lower back hip and knee saw doc looks like sacroiliac joint. Been confined to bedroom and bathroom for 5 weeks nothing seems to heal anymore.

Dec. 5th had head MRI went in ambulance no change from previous, seeing Neuro. Feb.22nd 2019.

Dec. 6th had letter of stroke doc via. GP quote

"blood tests raised Igm anticardiolipin antibody 132.8 mplu/ml

Igm anti-beta2 GP1 121.9 u/ml

and also there was presence of Lupus anticoagulant , Moreover his platelet count is low 142 , CRP 24 mg/l ,Lupus screen negative

In view of this persistence of cognitive impairment along with arthralgia and myalgia on a backround of definatly confirmed antiphospholipid antibodies and lupus anticoagulant on two occasions three months apart i would clinically put this as a diagnosis of antiphospholipid syndrome (APLS) " YIPPEE sorry got a bit exited .

So started on aspirin being sent to Rheumatoligist on Jan 14th (hope she knows what APS is) and Haematologist awaiting appointment .

What next i dont know triple positive but no clot.

Many thanks for listening

LIFE ISN`T ABOUT WAITING FOR THE STORM TO PASS

IT`S ABOUT LEARNING TO DANCE IN THE RAIN

Regards Dexters

[MaryF Administrator]

Hi, thank you very much for taking the trouble to write out your history, I am sending you this link again to our charity, so you can really have a good look at everything: ghic.world/ If you can get your GP to refer you to one of the specialists in your nearest area, off this list, they are on the front page of the charity. As a starting point it is good to know that the trio of disease is often Hughes Syndrome/APS, Sjogrens and a Thyroid disorder, which can either be Hyper or Hypo Thyroidims, or Hashimotos, often the NHS tests can be a bit iffy if they only do the TSH for Thyroid, so a lot of us order our own tests to be clear, and at the same time test our B12, D, Folate and Ferritin. Please continue to use our forum, we have great people on here who share a similar path to diagnosis. MaryF

[dexters in reply to MaryF]

Hi Mary F.

Thanks for reading my journey, have had a look at your other site lots of useful information, im seeing a local rheumatologist next Mon. not on list, no one on list in my health authority (no one west of Bridgend) If she is not helpful will see someone on list.

What Thyroid tests would you recommend , my mother had thyroid problems 45yrs. ago was stick thin loosing weight but eventually found underactive thyroid later in life had pulmonary hypertension . I will be using forum it is hard to believe after being known for over thirty years a lot of the public and medical profession are ignorant about Hughes syndrome.

Regards Dexters

[MaryF Administrator in reply to dexters]

Most of us use Medichecks or Blue horizon, something like this: medichecks.com/thyroid-func... as a new customer you may get a discount....I did one similar and it showed up everything that was wrong, which had been previously missed, obviously it is up to you. On some days they do have discounts.. worth ringing and asking them. MaryF

[dexters in reply to MaryF]

Thanks will have a look.

[HollyHeski Administrator]

Wow your health history although chronic and unique to you, is sadly to most of us similiar, we all go through terrible health before we get diagnosis.

Understand your excitement and really appreciate your upbeat active outlook.

Now we need to make sure you see an APS specialist and you get onto an anticoagulant (More than aspirin even if you haven't had a clot?).

Top left side of page is a list of specialists and also worth looking at our charity web- ghic/world.com

Welcome to our site, where we understand, share our experiences and hopefully give support.

[dexters in reply to HollyHeski]

Thanks for reading my journey, i am seeing a rheumatologist local next week not on list if not helpful lwill see someone on list. Nice to talk too people who have heard of Hughes syndrome .

Regards Dexters

[KellyInTexas Administrator]

We all here have a new friend called Dexters, and I hope your wife will feel she has our support as well. It’s very much a journey for the two of you as you well know.

This is a hybrid disease of neurology, hematology, and Rheumatolody for many if us.

You will find additionally you will need to add a gastroenterologist to the mix. I certainly did. The blood that supplies thetiny vessels to nerves that enervate the intestines can micro clot. This can be one problem.

Will be in touch!

Kelly

[Ozchick]

Perhaps you might call the Rheumy before having another wasted appointment and ask him if he/she is experienced in APS? If they don't specialise in this, then perhaps do as Mary says and look at the list for your area. I'm off to walk my dog now but I can remember many days before correct diagnosis and treatment, where i would get out of bed, have breakfast and go straight back to bed again with no energy.

[dexters in reply to Ozchick]

Thanks for reading my journey, seeing Rheumy nxt week wiil post to tell how i get on.

Regards Dexters

[KellyInTexas Administrator]

Ok,

I’d like to add that you need to have a look at cardiac syndrome x. ( it’s basically prinzmetals angina .)

Without knowing of course exactly what is going on with the heart, this can be a classic problem with APS patients. The blood becomes too thick and causes little microangioapathic angina issues in the little vessels in the heart.

A fellow APS patient on this forum ( Yllek) had a doctor explain it to her in this way, and I found it extremely helpful and I have since shared it with my doctors:

“ think of the heart as a tap. Think of the blood as the weather that flows through it. When the blood becomes too thick or sludgy, it’s similar to water becoming semi frozen in the tap. The tap sputters and protests. “

Thin the blood, the heart will function better, indeed!

I also have had episodes of cardiac syndrome x if my INR is 3.5 or lower by vein. Jaw and quite sever chest pain and admitted to hospital. All tests showed fine as far as structure of heart and large veins and vessels.

I would add for good measure that APS can cause non infectious endocarditis. This is known as liebmann Sachs endocarditis. It’s vegetation on the heart valves. I deliver it results in pulmonary hypertension.

It might be a good idea to ask about this since you’ve experienced high blood pressure.

[dexters in reply to KellyInTexas]

Thanks for reading my journey, i mentioned syndrome x to doc. ayear ago but was told heart ok, now i have a diagnosis of APS will be telling them to look again .

Regards Dexters

[silemoran]

I think I'm reading my own story ! Been down that road too.

[dexters in reply to silemoran]

Thanks for reading my journey, it looks as if we have all had a uphill battle to diagnosis.

Regards Dexters