Set of symptoms - who can relate?

[rik_]

Hey everyone,

For quite some time now, I've been struggling with a set of weird symptoms, and I'm desperate to find the cause. I recently tested positive for antiphospholipid antibodies. While the test needs to be re-done, I'm curious if this could be the answer. I have multiple symptoms, and I'll list them here:

Over 10 years ago, I experienced episodes of vertigo, brain fog, sudden paroxysmal hearing loss (which resolved), tinnitus, tingling in my legs, numbness in my hands, heart pain, sinus tachycardia, and episodes of high blood pressure (140/80, when my baseline is 110/60). All of that resolved for a few years, except for the tachycardia, which presents with symptoms consistent with POTS to this day and episodes of high blood pressure.

Then, three years ago, I had an episode of heart pain, chest pressure, extreme fatigue, and brain fog. I had mild occasional livedo reticularis on the upper body, legs and arms, and petechiae on the arms and upper body, headache attacks, increased thirst over months that did not react to drinking, extreme brain fog after eating (especially breakfast), and malaise after cognitive and physical efforts. I started getting erythromelalgia (which is a condition with attacks of red and burning feet)/leg pain and a pressure sensation in legs/hands. Unfortunately, I wasn't in a position to visit a doctor at that time.

I still have restless legs and tingling/ants sensation, heat intolerance, leg pain, erythromelalgia, sometimes numbness in feet and hands, and blood pooling in my extremeties. I also experience chest pressure+heart pain, palpitations, brain fog. I have liver pain/gallbladder pain, gastritis (of unknown cause), abdominal pain, nausea, dry mouth at night, episodic mild laryngitis with mucus, night sweats, urinating 5 times at night, and increased thirst (which luckily is decreasing). I have episodes with exercise intolerance where I get chest pain and nausea, as well as weakness. I also experience episodic joint pain in fingers, toes, hips, lower back, radiating into thighs, and I have a meniscus tear and knee pain.

Ten years ago, I had an MRI of the brain (no results except a pituitary cyst), and I've had numerous endocrinological tests (which came back without results, except for high IGF-1, FSH, and LH). Now, my result for antiphospholipid antibodies came back positive for ß-2-glycoprotein IgG (18 U/ml) and weak positive for cardiolipin IgG (12 GPL-U/ml). I had an MRI of the abdomen, showing multiple hemangioma/cysts in the liver.

Could APS be the answer to most of my symptoms? I've researched that erythromelalgia can be caused by microvascular arteriovenous shunting, which can be a result of microthrombi.

What do you guys think?

[KellyInTexas Administrator]

Hello!

Your symptoms sound very uncomfortable .

Bring up these specific issues exactly as you have written here at your next appointment. ( your rheum might refer you to a neurologist to help determine how well your nerve fibres are conducting signals.)

As I’m sure you have already figured out, other autoimmune disorders tend to cluster together.

Your rheumatologist / coordinated between GP and rheum should refer you to the appropriate specials for those concerns that flag for him/ her, but do not fall directly under rheumatology. ( example endocrinologist- same one you had previously if you are still seeing this Dr.)

[rik_ in reply to KellyInTexas]

Thank you for your reply!

I have not yet been able to see a rheumatologist. The neurologist I am seeing for erythromelalgia has conducted autoimmunity tests, which came back positive for aPL. I am not sure how to interpret all the other autoimmunity markers, I think they all came back within reference values/negative. For example, for antinuclear antibodies it says < 1:100 and reference value is also < 1:100, so I guess that means I tested negative.

I have another appointment, after I had my spine MRI, and I am sure he is going to explain the autoimmune results to me in more detail. He tested my nerve fibers, and although he did not mention anything being abnormal, I will bring that up again. Next time, I am going to tell him all about my symptoms. I only mentioned the erythromelalgia and pain in my legs. After so many years, I really struggle because I fear being told that my symptoms are too unspecific, and I should go meditate or something (which is something I experienced a lot in the past, unfortunately. I am very scared going to the doctor and talking about my symptoms).

Thanks again!

[GinaD]

Many of your symptoms certainly match APS. As for blood test results? They go up and down for immune system reactivity reasons -which are nearly impossible to identify. Example: what if your tests, once positive but now negative, soar upward one day? --Well, .., maybe it was that ride with the sniffeling, coughing cab driver and now your immune system is in high gear to isolate and destroy any invading pathogen.

But autoimmue disorders often appear in tandom with each other. To repeat above, this is why consulting with a rheumatologist often proves to be beneficial.

Map out your symptoms in clear bullet note format, in hopes that a rheumatology consult is forthcoming.

Dr. Hughes noted a strong correlation between gluten sensitivity and APS. I went gluten free in 2004.. Since then all my APS tests and symptoms have been negative so you might explore keeping a diet diary and see if avoiding this or that potential allergen , (which must be done for at least two weeks to see any results ,)might be related to other symptoms. The main allergens guilty of prodding some people immune systems to self destructive behavior are: gluten, dairy, soy, peanuts, and other nuts..

[rik_ in reply to GinaD]

Thank you! I will try to get an appointment with a rheumatologist. It may take many months, as the healthcare system is very overwhelmed right now in Germany.

I've had a colonoscopy and blood work done to rule out celiac disease. When that was still in question, I followed a strict gluten-free diet for about a year without any change in symptoms. I'll look into the connection of gut/autoimmunity further—thanks for the hint!

[Bloodredroses in reply to GinaD]

Gina , best to avoid peanuts and soy for the ‘mould factor’ google that . Immune systems HATE mould . I drink skim milk as protects my stomach in APS flare ups and against Rivaroxaban blood thinners , I have a Slimfast shake . Seems to help .

[Bloodredroses in reply to GinaD]

Yes agree with GinaD add sugar to that. That brain fog fast heart beat weirdness after some food( instant porridge does it to me as processed protein ) is a hypoglycaemic type response. Try cutting out all processed sugar , I am OK on natural plant sugars like Freedom . Even sugar free chocolate powder OPTIONS is OK . Even vegan chocolate OK. You just have to try everything . Yes all those symptoms . Drs eyes glaze over if you lost them all. If tests show negative then it’s the APS. You must have arthritis anyway . An auto immune flare will make osteo arthritis in knees flare up. Just blame EVERYTHING on APS , tell yourself otherwise you are healthy ( you are) you are happy healthy still alive . Think happy thoughts , eat your favourite low cal sugar free ice cream or frozen yoghurt . Otherwise your APS will convince you if otherwise . The immune is normal and should be sensitive . I wear a N95 mask ( filter) so can breathe . on the bus and in G P surgery or crowded shop so the sneezing coughing blow back not up my nose . I still use a hand Sanitizer after bus g p hospital and shops.wash hands as soon as in home .

As I put away groceries . I do wipe down very handled groceries with anti bact spray wipe ( lot of dirt comes off ). Then wash hands thoroughly . Done . Nice . Relax . Have not had a flu or covid at all . ( yes fully pincushion shots covid flu shingles pneumonia . I do not expect others to . It’s my immune . MY dentist, Haematologist all back me up. I see my local Specsavers is using all Covid protocols advise on email appointments again. I 100 % wear a mask at eye tests too close for comfort . My dentist always wears a mask , he almost died in 2020 long covid 2 years . I say 💕 🙏🏻you’re immune . Protect and respect it . It will love you back .

[GinaD]

Tests confirmed I do not have Celiac. But a gluten free diet has mDe such a positive impact on my health that I will never knowingly eat gluten again. There was that time when I ordered a Chinese dish I had eaten before abd which I was told was gluten free. This time, ( post covid and 2years since I had eaten there before/ ) I vomited without warning less then 20 minutes after I had started eating. I figure they had hired a new chef who fried the chicken with flour instead of gluten free panko.

[Bloodredroses in reply to GinaD]

Must have been . I eat a Marks _& Spencer’s and a Sainsburys Chinese Sweet Sour Chicken , with abso no reaction. ?? The packet sleeve is clearly labelled . I think supermarkets are conscious of allergies . Restaurant Chinese also makes me ill.

[GinaD in reply to Bloodredroses]

Most Chinese food contains monosodium glutamate, aka MSG. There is strong counter-reactivity with gluten allergy. Sadly, I have had to forego many Asian restaurants, purchase a wok, and cook myself. When I ask, " does ( this) or (that) have MSG?" The employees have no idea. Hint: most soy sauce has MSG.

[Bloodredroses in reply to GinaD]

The worst is when Chinese restaurant employees don’t stir the lumps of msg in and dissolve . Some poor customer will get a huge clump if it. It has caused. Asthma and seizures in kids. Severe . Gina I don’t know where you are . In UK the big supermarkets are terrified of being sued or publicity with allergins . They gave big label warnings re nut contamination in preparation . I have no reaction to the 2 stores Chinese I mention above . Nothing too scary listed on label. No metallic taste of msg . M & S are cautious I would say . MSG is bad stuff. Asian kids hospitals full of kiddies with asthma from it , plus grow chests from the 3 times per day hormone fed chicken . I have a half portion to err on caution . I guess health food seeet and sour sauce no additives is available . I will search . Add veg chicken . Rice egg peas has 0 msg . Need not to be lazy. M & S sweet sour tastes like a chef has balanced the vinegar sugar sweet sour perfectly . No msg taste . If they colour with beetroot not the nasty red chemical. I Must read the labels harder . No reaction. But ………. SILLY fact is I live above a big Chinese proper authentic. restaurant , the owner is nice guy I say hello to.

Redirect our wrong mail . I would not want to sour ( sweet sour 😂 ) our nice nodding exchange by delving into msg or any ‘sensitive ‘ topics . No way to check menu for msg either . Not on window MSG Free. Love to taste but too scared of the potential asthma type attacks , hallucinatory dreams , metallic taste of msg . Stick to the store bought sweet sour , so far , so good. Keep our relationship ( sweet not sour ) Corny cringe 😬. My organic version will never taste as good as the Store professional chefs who create menus and ingredients .

[GinaD in reply to Bloodredroses]

I’m in the US, West Virginia. I have learned to read labels.

[Bloodredroses in reply to GinaD]

We must .wave 👋 .

[Bloodredroses in reply to GinaD]

YES Sjogrens Syndrome causes thirst , APS and Sjogrens Syndrome can overlap have similar symptoms , my Specialist said. Plus read it. I was convinced , I had , I tried to see an immunology specialist , he refused unless I had LUPUS . no other specialist to see re immune ?? He told my G P to do the ‘ ‘ Sjogrens Syndrome tests ‘ , I.ll Look the name up later in reports . I was negative ! So I guess it’s true , with APS you can get weirdo Sjogrens Syndrome symptoms also . ( or as I call it’ ‘Anything is possible APS Symptoms .’ 😆

[WendyWoo50]

The thirst could be attributed to another autoimmune Sjogrens Syndrome. That, as well as APS can cause joint pain.

APS does throw up some weird symptoms.

My advice is PREPARE for all consultant appointments:

Have a A4 folder in which you place each of the pieces of information listed below. Add to each your name and the date. If under multiple consultants, add dividers for notes from each. And a section for the reports/letters/results.

This was invaluable to me especially in the initial meetings the consultants were grateful too and it saved so much time therefore maximised the time spent on finding out the info I wanted/needed to know .

1) Type a clear list/table of medications, name, strength, frequency, reason for taking.

2) List/table of Treatments eg. Physio, special diet, Accupuncture, Reiki Healing, Meditation … add date commenced/finished (or ongoing) & frequency (I do try to meditate every day and now teach it too; it does help and that’s why they push it so much!)

3) List diagnosed conditions how diagnosed. If possible date diagnosed

4) Clear precise table of symptoms (symptom and very brief explanation if required).

5) List of questions that you would like to discuss in that appointment. Leave space in which to write their answer.

Consultants don’t like too many words, so keep everything as brief yet informative as possible.

I photocopied everything and during the meeting at the appropriate time handed the consultant each page. Then the list of questions. Saying, “ I would like to discuss these today if possible please”

Think carefully about them and limit the numbers to the fewest. If possible take another person. Also give them a copy of the Q and a pen and ask them to record the answers for you as well as take any other notes. That way u can be focussed/present on what is being said (I always took my mum and she quietly wrote for me).

Let’s face it we only get a short time and if you spend that time thinking and listing things there’s no time lest for your Q.

I found consultants appreciate that, especially to have a copy themselves that they can add straight to your file meaning they don’t need to write it all themselves.

Up to you obviously. It is a lot of work but in my opinion well worth it.

So you are prepared. You have an appointed chaperone. Now think about what you look like. No point wearing lots of makeup they may need to look at your skin, but you can look smart. As if you have bothered - so they bother. Make sure you are clean and hair is tidy. Nice clothes. They know how ill you are so there’s no need to make yourself look awful and scruffy. Please take no offense I’m just trying to help you and anyone to get the most from all meetings. I teach adults to get the most from situations and meetings, even school meetings, interviews etc so have 25+ years experience now in these things - I just help people

Please let me know how you get on. When you start it is like a minefield I’ve found preparation is key to getting results. (Same as all meetings) Good luck Woo 💋 x

[rik_ in reply to WendyWoo50]

Thank you so much for you very detailed response! I will do my best at my next appointment!

[Bloodredroses in reply to WendyWoo50]

You make me feel grateful , All My APS relevant conditions clinics records , blood results , letters from Specialists ( 11) in one hospital care app , HRM /if NHS tries to refer me to a different hospital trust , I go back to G P ask for new referral back to my one hospital with all my records . ( or the NHS APP ) . I keep my own calendar with notes , as most my G P appts are calls ( my choice ) all in My iPhone notes. I constantly update this list . Keep NHS App updated . It’s also handy to get a print out of last 1 or 2 years until today from G P SURGERY , conditions medications . Proactive is best .

[Bloodredroses in reply to WendyWoo50]

YES PREPARATION mentally and physically is key before appointments .

[Bloodredroses]

YES YES YES . if it is weird and sucks BUT otherwise healthy 😂= APS . No one has ever heard of it or understands Autoimmune Conditions and flare ups( unless Lupus) none of my G P s have fully understood it, no problem , as long as just refer me to the relevant Specialists ( ALL 😂) Don’t treat me like a hypochondriac.( (They never do ) I have my APS medical diagnosis recorded . (G. P supports my Specialists ref to blood test for liver every 4 months because on Rivaroxaban blood thinners ) and They do fill my requests for medications ( every organ in body 😂, that manage my autoimmune flare ups. Importantly , believe me . I do go months without G P contact, if no flares , or it can be once p w if immune blows up . Stay on this thread and communicate. Rest and ice . Right now , I have ice pack on my head forehead , eyes , eating chocolate watching TV . The subzero cold snap , which cause. All the osteo arthritis flare upsups , have dissapeared because icing and a forbidden Iboprofin ; instead Herpes flare up on scalp or around eyes . Changes day by day . La de da. It sucks . Ice , cool drinks , no hot food . Iced low cal yoghurt ices frozen fruit . Wait for it to pass . Think happy thoughts . Wave .

[rik_ in reply to Bloodredroses]

Thinking happy thoughts and frozen yoghurt is always good advice! Thank you

[MaryF Administrator]

It is not unusual for B12 deficiency and folate deficiency to be missed and it can cause problems, and it is also not unusual with this disease to have a Thyroid problem, (Prof Hughes has widely written about the trio of disease which is Hughes Syndrome/APS and Sjogrens, and a Thyroid disorder and if you have a Thyroid disorder often B12 can go with that, if the gut is compromised in any way, this can also cause a lack of B12, as can proton pump inhibitors and also Metaformin, worth testing it all. MaryF

[rik_ in reply to MaryF]

All have been tested, my folate (I eat a lot of greens) and B12 (I supplement) are actually a bit over the top My thyroid is is healthy too.

I do not take PPI's for my gastritis because they gave me weird side effects.

Thanks for the heads up!

[RavenWolfnHoofUSA]

I believe your multitude of various, seemingly non related, are caused by APS. I too have similar symptoms. I was diagnosed with primary APS in 2011. I also have issues with fluctuating INR. I wish physicians were more interested in researching APS as the "imitator of various illnesses". They'd learn from us.

[rik_ in reply to RavenWolfnHoofUSA]

Thank you! If it really is APS, and anticoagulation therapy works for me, I am hopeful to see a change in my symptoms.

What kind of symptoms are you experiencing?

[rik_]

Update:

I just went to the neurologist to discuss my recent MRI of my spine. There's nothing that can explain my symptoms, but I do have a protrusion of the L4–L5 disc/sacral vertebra, which may explain my lower back pain and lumbago.

I will have my second APS blood test in 6 weeks. He also took blood to test my genome for a genetic mutation that may cause my Erythromelalgia, and he is testing for Fabry's disease. I also will have an MRI of my head.

So far