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Avatar universal

I am so hoping to figure something out

I have been struggling with strange symptoms for years, although was in "remission" for about 10 years with only very very mild flare ups.

The last year and half my symptoms have resurfaced with a vengence.

I have the following:
paresthesia type symptoms (that come and go)

a feeling of tissue burning/inflammation throughout my body (chest area, groin, legs, etc).  This sometimes causes the feeling of difficulty breathing (although in reality - my oxygen level and all is fine).  Sometimes these symptoms are non existent and I do have good days.

I wil get a strange migraine auro before all these start where the left side of my body gets this numb gnawing sensation then the symptoms hit (including head ache)

slight reynauds syndrome

two seizures 30 years ago (med free and sezure free for 30+ years)

Positive tests/blood tests:
+ANA homogenous & speckled.  Never higher then 1:640 though
+ACA somewhere around 35
+ C Reactive protein I think it was about 20
MTHFR (A1298C mutated gene)
30 day event monitor that showed PVCs and PACs of benign nature
upper end of normal or slightly enlarged spleen (although this could be "normal" for me)
of course anxiety from the "unknown" of this all.

Negative tests/blood tests:
MRI of brain, cervical spine and lumbar
ENG/NC of both legs and arms
bone scan (just very mild degenerative arthritis)

My Rhuematologist feels I have an autoimmune disorder, she just doesn't know which one.   I am sooo thankful that finally someone is taking me seriously.  Does anyone have any thoughts on this?!  I would greatly appreciate it.

Thank you kindly.
Susan (42)
8 Responses
Avatar universal
Hi Susan.
Your rheumatologist thinks you have an auto-immune disease well so do I.

You have a positive ANA, homo, and speckled, have you had a ANTI-DNA?

Then you have positive ACA, this is a positive anticardiolipin antibody. When this is found on more than 2 occassions, over a space of 12 weeks this is known as the Antiphospolipid Syndrome, which is an auto-immune condition which causes the blood to become sticky, causing allsorts of problems, some of what you have mentioned in your post .Especially the migraines with aura. and even down to seizures and the left side going weak. It also causes muscle and joint pain, along with other problems,
Because the blood becomes more sticky this leaves you at a risk for clotting issues, which can result in bloodclots, in the body.

You need a specialist in Antiphospoliid Syndrome, which is usually a rheumatologist, but make sure they have a specialist interest in Antiphospolipid syndrome, and know what they are doing.

I dont know where you are from being USA, or UK?
But there are some real good specialists in this in London in the UK.

Antiphospoliid syndrome can also go alongside other auto-immune diseases, and when this happens it is known as secondary APS, it can be seen in a lot of Lupus sufferers.
Hence the illness is known as Hughes Syndrome in the UK, after the worlds leading rheumatologist in Lupus, Professor Hughes, who the syndrome was named after in 1983, who found the illness in Lupus sufferers.

If you get no joy with your rheumy, there are a few good heamatologists what know about it.

If you need anymore help , give me a shout.
But you really need a good specialist in auto-immune disease, and especially one with a general interest in Antiphospolipid Syndrome/ Hughes Syndrome.
Good Luck
Avatar universal
Thank you, I really appreciate your response.  I live in the United States - Michigan.  I have an appt with a new Rhuematologist from the University of Michigan.  Although I don't know if they are a specialist in Antiphoslipid Syndrome.  I have only one child and had two miscarriages after her.  

You would not even believe how most Drs just tell me I have anxiety and want to put me on antidepressents/anxiety medicine.  I have refused because although I am anxious, I do not feel it is from anxiety alone.

I will try to get some more information on a Dr who specializes in this.  I also developed heart palpitations (PVCs and PACs) found from the 30 day event monitor that I have worn.

Thank you kindly.  I appreciate your response.
Avatar universal
Glad you are going to a rheumy  from the uni of michigan.

You have had two miscarriages, ah so sorry to hear, this is a common feature for women with the Antiphospolipid Syndrome.

I refused the antidepressants too, as my illness was put down to anxiety, i have never heard anything as stupid in all my life. I then went on to a brilliant doctor in London and bingo, i actually had the Antiphospolipid syndrome.

I have had a good few off your symptoms even down to the ones were you describe, effect your breathing.
I am glad you are staying strong, and dont let them fob you off with happy pills, for your illness, because them wont cure you.

You could mention the Antiphospolipid syndrome to your rheumy, and if you would like anymore info, try the Hughes Syndrome Foundation, on the web, and maybe if you could print some info off for them it may make there job easier, and also you may end up with a quick diagnosis, getting you the proper appropiate treatment.

Good Luck. Let me know how you get on.
Avatar universal
I wonder if they will even consider this if I haven't had a stroke, heart attack or blood clot.  I do have all the other symptoms.  I really appreciate you sending me this information because I am definitely going to pursue this further and at least question/ask about this.

What were you symptoms, if you don't mind me asking?

I feel hopeful that I can get a diagnoses.  It is really frustrating when Drs want to medicate you.  I have had nuerontin (for numbness  and tingling) offered to me so many times and I refused because I wanted to know the CAUSE before I medicated myself.  And anxiety/depression meds...pretty much every time I am seen.  LOL

The Rhuemy that I see now understand where I am coming from and doesn't try to do that anymore.

Hugs, and thank you.

Avatar universal
Yes you should have a diagnosis, on the grounds that you have suffered miscarriages, i know many people with APS, who have never had a clot, but they get neurological problems.

Can i ask you do you have livedo reticularis, this is corned beef skin, and if you get it were abouts on your body is it.

The symptoms i get , are headaches, thrombophlebitis, joint pain, fatigue, pins and needles, rashes, muscle aches, dizziness,vertigo, and chest problems, like i cant get my breath, breathless, i also get parasthesia,s, and calf cramp in the backs of my legs.
Along with the dreaded bloodclots. yuck.

I would put money on this being APS, thats why you need a rheumy with an interest in APS.

I travel 300 miles to London to see my APS, specialist, but he is worth every mile.
If you need anymore help , im here, also check out the Hughes Foundation on line,
Let me know how you get on, and remember knowledge is power, never give up trying,
I was like you, trying to work out what was wrong, i suffered for years, and the only thing on offer was a shrink, and a bottle of happy pills.
I was like you also and totally refused, because i thought they was hilarious to even think that they could cure me.
I carried on and bingo, dont throw the towel in. Keep going to find the answers you need to get better.

Good Luck
Avatar universal
Thank you Nicola -

I am glad you found me :-)
I do take a daily baby aspirin a day, but I am wondering if plavix would be more suitable and maybe some of my symptoms will deminish or go away.

In terms of livedo reticularis, maybe I get it on my feet and lower legs arms & hands (maybe) and only very very slightly.  But I am not convinced that I have that though.

I'm going to make an appt with a Hematologish at U of M because she does specialize in that.

Again, thank you so much.  I will definitely keep you posted.

Oh, and I have/am going to counseling - but it is hard because I know she thinks all my symptoms are anxiety related (somantic anxiety)...So I may have to take a break until I find some more concrete answers.

Thank you Thank you and God bless you!!!!!

Avatar universal
Hi Susan.

Glad you are going to see an haemotologist with a interest in APS.
I am happy to hear you are taking an aspirin a day , that is usually the first ine of treatment for APS, and then anticoagulants, but hold tight because there are some new drugs coming were you dont have to get your INR checked. which is easier for the patient.

I am also glad you are getting counselling, also it will probably make you feel better to talk openly with someone, and im sure you will get a report out of it which says your problems relate to an actual illness. ie APS.

Dont give up searching though, at the same time, you need to get all your recent bloodtest results, and keep copies for yourself, .
If you are like me you maybe a persistant ACA Anticardiolipin positive, which means it is there all the time and doesnt leave the blood.

Glad you are working to an accurate diagnosis for yourself, and who knows with the correct treatment, you maybe having less symptoms shortly.

Please let me know how you get on.
Good Luck.
Avatar universal
Well, I had my follow up with my regular rhuematologist and she said she doesn't know and we will "watch",   I asked her about Hughes Syndrome and she said NO.

I asked her if all my smptoms could be fibro and she said it is possible, but then why do I have + ACA and +ANA?

So basically I walked out so confused as usual.  In the meantime the burning is so bad in my throat, esophageous, lungs and both breasts.  My throat looks RED so I am wondering if that is going on throughout my body.

I don't know who else to see.  I'm tired of going to  the Drs for them only to say...NOTHING IS WRONG or WE DON'T KNOW or SOMANTIC (in my head).

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