A little background.. I tested positive for the antibodies after being tested for miscarriages. With the help of blood thinners I was blessed with 2 boys but with very difficult pregnancies. A few years ago (about 8 years after first tests were ran)my whole body hurt for weeks. I saw a rheumy which of course ran a ton of blood work and tested positive for the antibodies again (I can remember what antibodies they ran). January 18th of last year my body went crazy. Headaches, parasthesia, asthma type issues, severe fog brain, abnormal ekgs, wrong words coming out...the list is lengthy. I have seen too many specialists and have few answers. My hematologist ran labs a few months after it all started and my antibodies were actually negative at that time which was shocking. The only thing that came back abnormal was my ANA was high. My body hasn’t been right since but the most puzzling thing is that 99% of my symptoms are only on the right side of my body. The weakness, numbness, parasthesia...only on my right side. They can figure out why! UGH My new endo think that even though my titers for APS we’re low last year that APS might still be to blame
Anyone else have nerve issues on just one side? I’m certainly not looking here for a diagnosis but am curious with this suggestion from the endo if anyone else’s APS has cause asymmetric issues.
Thanks!
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I guess the first question is what are you on for your APS? If you aren't properly anticoagulated lots of weird and seemingly unrelated problems crop up.
You sound like me. I have issues only on my right side too. They found I had a silent stroke and they don’t know when it happened found by accident checking hearing loss from a car accident. MRI picked up this silent stroke. Weird huh? Hope you feel better
First: are you consulting with an APS experienced doc?
2nd: Have there been any imaging of your brain?
3rd: Consider an elimination diet for a few weeks. You would be shocked to note how many autoimmune patients’ root cause is a compromised gut with a food sensitivity —usually gluten. Just google elimination diet or Dr Perlmutter or Tom O’Bryan for more info on food sensitivities.
2 rounds of CT’s and MRI’s 6 months apart that we’re clear. Once they ruled out stroke after I was admitted the next thing they said was MS but MRI’s come back clear. My symptoms are identical to MS but the imaging doesn’t support the diagnosis. I have other non-MS like symptoms as well but those we pinpointed were a gluten and dairy sensitivity and Hashimotos. The diet change has been fabulous but unfortunately only with the issues I struggled with for many years before this neurological craziness started. It is so nice to have relief from that though!!
Not seeing an APS specialist yet but I’m home with a sick kiddo today so I’m going to make some phone calls.
I’m just outside of Dallas, Texas. I have a contact with University of Texas Southwestern Medical Center. A leading teaching and research hospital. I was referred there last year by several doctors but unfortunately they were out of network for my insurance. I was recently able to change my insurance plan though and can see them now.
I’m in the San Antonio area. Texas is very weak in APS in general.
Please understand sero negative APS is quite common and I have come to learn that in many cases weakly positive titers do not predict or reflect how severely you will clot.
I am only weak- mild positive but clot horribly. I also went sero- negative for a brief stent. ( 4 months maybe) then positive again.
I’m also having MS like symptoms- with banding tightness. But it comes and goes.
APS rushed my body with large DVT’s in November- almost a year ago- that’s when I was diagnosed- but was symptomatic for years prior- we had no idea what was wrong. Multiple miscarriages, etc.
I have been told by my heme and by dr Hughes ( was sent by my treat here to London Lupus center because I was not stabeling in warfarin.) it’s the tiny capillaries to nerves in spine that are clotting. It mimics transverse myelitis. MRIs are clean.
That would make total sense!! Last year was very weird because the whole madness came out of nowhere and then my issues and symptoms kept changing. I kept telling them that it was like something was going through attacking different parts of my body. At first it was my whole body but more my right side, and my ekg and echo were abnormal. That sent me to cardio but by the time I got in with them (a few weeks) my echo and ekg were clear but I was having a HORRIBLE problem with breathing which sent me to pulmonology and I “failed” my lung tests but the deficits didn’t clearly explain the problem. Then that let up quite a bit but my right side became very weak and heavy and I’ve struggled with that the longest and hardest. All of the specialist finally pointed the finger back to neurology because that was the only thing that would have explained all of the craziness (so much more than I will bore you with here) but neurology just kept saying the scans were clear.
That’s scary and crazy that they had to send you to London with all of the resources we have here. You would think SOMEONE here could get with the program.
If you can find a specialist for systemic lupus erythematosus, this may be helpful. My GP originally considered MS. In MS, only the myelin sheath is affected, but in lupus, every organ is attacked.
Blood tests can be negative; and there is a condition called "sero-negative." Sometimes, the blood tests lag behind what the body is actually doing.
Ros, I need your help in understanding lupus better. I’d really enjoy learning more. I’m “ on the cusp” for full lupus diagnosis (????) and understanding this may help me decide on medications. Plaquinil is absolutely wrecking me. Imuran is being pushed to the forefront for me. In fact, I think many of us would benefit from your expertise in this.
Soon I’ll post a question specific to this, and address it to you. Attention Ros! This ones for you
It might be helpful to post in LUpus Patients Understanding & Support (LUPUS) as GHIC is for APS/Hughes and while many have both, it is probably better to do so. Make sure it is LUpus Patients Understanding & Support (LUPUS) as there are other lupus organisations.
Hello, I think you probably need to be on anticoagulants and not just Aspirin. You need also regular and detailed thyroid profiles done, plus your D, B12 and Iron looked at. Please pick the brains of those in the USA using this forum and find yourself a specialist, it is vital. MaryF
B12 has been a huge issue and we are finally getting that under control. All of the docs blew it off for over a year even though it was in the 200- low 300 regardless of what supplements I was on. We switched to injections and it has helped a lot! I’ll mention D next week when I see my endo because I don’t believe that has been tested in a while. I have a fabulous new endo. She truly believes in treating how the patient feels and not just the numbers. She wanted to know my whole life story so she could have the whole picture and was the one that suggested that the his was an APS issue when agreeing that the other docs were most definitely missing something.
Good for your Endo, as Professor Hughes says himself regularly, the trio of disease is often Hughes Syndrome/APS, Sjogrens and a Thyroid problem. MaryF
I was taught in nursing school that PO( by mouth) B12 is not usually sufficient as it isn’t absorbed well that way. Best of wishes on continued success with the injections. Cindy
You are welcome. Dr Hughes believes this is a hybrid disease of:
Autoimmune, hematology, and neuroogy.
It’s just Texas is behind..( missed the diagnosis) . and many US docs are very “ BY THE BOOK”. Sometimes no common sense which in medical terms means years of clinical practice with a specialization in treating a wide array of APS patients and have seen its many manifestations first hand.
As Mary said I think you first of all need to be on anticoagulations and not only Aspirin.
It seems to me you have neurological symptoms and those can attack only one side of the body. That happened to me. I had microemboli on my right side as the damage was at my left side.
I must have an INR of 4.0 today.
Most important is that you have a Specialist of autoimmun illnesses who has had patients like you before and knows what questions to make and also what drugs you need.
Thank you everyone! I should be getting a call back today with an appointment time soon to be seen at our big teaching/research hospital here. Hopefully we can get to the bottom of this!
If not, I welcome you to consult with my heme in San Antonio. I think he is up to speed now. He has my Hughes clinic letter and has seen many APS patients. ( and Lupus.)
He is a little more flexible . He focuses more on the heme than the oncology- which is huge.
A surprising diagnosis! I saw several specialists Wednesday and was diagnosed with hemiplegic migraines. At first I thought they were but but I listened and then did a little research and it is exactly what I’ve been going through! I’ve done s ton of research in the last 2 years and had never heard of this. I started medication for it and am praying hard that it works and they are correct.
Interesting! I found out recently that my second test that was years after the first was actually negative, not positive. I was tested last year as well which was negative. I will probably try to see someone at the hospital about it just to dig a little deeper.
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