CAD ?

[BeachHaven123]

I had an incident this week . All of a sudden I just could not get warm. Freezing. Like skiing in New Hampshire with frostbite.

I found a source called your rare disease advisor. From what I could tell owned by doctors. Unfortunately, there was one case study where one of us who got into trouble with this mid Cesarean. They managed to save both mother and child but they called it CAD. A manifestation of APS. I could read the case study online.

No cure. I think she ended up having 5 transfusions

I was wondering if any of you had experienced this.

Doing much better now. Ordered some purple long John’s.

Thank you all. !

⛄❄️🎄

I

[rafael]

Hi there. I have lupus, fibromyalgia and APS! I have experience what you are describing. Mine feels like ice cold water running in my veins - mainly my legs, arms and back. I haven’t been dtiagnosed with anything but I would suggest these symptoms could be linked to Raynards Syndrome as my fingers are really bad when this symptom comes on.

I hope this has helped xx

[BeachHaven123 in reply to rafael]

Thank you ! I will see what else I can find. 🩸❤️

[MaryF Administrator in reply to BeachHaven123]

Before diagnosis and treatment, my slow Thyroid kept my body temperature very cold and I was cold even in summer, however I only discovered the state of my thyroid health by joining the relevant Thyroid Forum, Thyroid UK, (also on here, and a great charity), and ordering my own private and detailed Thyroid tests. Unfortunately often only the TSH test is done and is not very reliable, often B12 deficiency can also play part, so good to properly test. The best Thyroid test on Medichecks is the one I used most recently. MaryF

[Tucson]

I don't usually feel the cold but sometimes maybe once every couple of months I get the shivers where I go from being warm, maybe even in bed so snuggly and start to shiver and shake uncontrollably. I get up and stagger around trying to find a thick warm fleece and a blanket, wrap myself up and get back under the duvet till I recover which can take anything up to half an hour. Tbh I'd never considered it was anything to do with my APS but then I have very few APS symptoms, just multiple strokes and trouble with my joints and that's it, so who knows. I'll try to remember to ask at my next appointment at st Thomas's.

[Piscesdreamer]

I have not heard of CAD.Did you give you any information?

[BeachHaven123 in reply to Piscesdreamer]

Hi !

I had never visited this site before. But I went to rare disease .com and then to rare disease advisor and tap in APS Brand new to me but from what I can tell mostly doctor’s reporting the exceptionalities of rare diseases. Invitations and news about clinical trials. if you have any questions you can call and email. I would try to explain but might get it wrong since so many of us have more than APS.

I had never heard of it before either. Tried to find Reviews but no luck. It appears to be basically a doctors health network for rare diseases. Not to replace this site or treating docs. But a more FYI so the patient can understand where the research is and provide access to health care.

All I know Just trying to stop freezing!

Good Luck !

[Piscesdreamer in reply to BeachHaven123]

CAD in medical terms usually means Coronary Arterial Disease.

[VinVic in reply to Piscesdreamer]

Maybe Caps? Not Cad

[Piscesdreamer in reply to VinVic]

CAPS would make more sense. For thr original poster, CAPS stands for Catastrophic Antiphospholipid Syndrome. It is a rare manifestation of APS.

[user666]

you would know if it were CAPs you would be in the hospital very very ill. Try not to google every disease or every symptom. Instead, call your doctor and tell them your symptoms and let them figure out what might be happening.

[KellyInTexas Administrator]

my.clevelandclinic.org/heal...

CAD, Cold Agglutinin Disease

I was also tested for this. I will tell you the test is very persnickety , and tubes of blood must be kept very cold and on ice, and sent off immediately to a specialty lab.

University of Michigan hematology/ oncology does treat this.

Dr Jill Schofield tested me. ( negative)

It is not the same a “ ivy cold nerves running like isolated narrow rivulets down lids or arms.”

I do have this and this is neuropathy. (Demyelination of nerves.)

I do have a cold that settles throughout the entire body - evenly distributed- like muscles and bones are in the process of evenly freezing to the bone. It’s a deep freezing aching cold that has a thorough uniformity to it. It chills set in and they are hard to shake.

I mow wear wool socks even in the Texas heat- bit our air conditioning in public spaces feels ridiculously excessive to me- and to most Europeans who visit.