How To Test For Autoimmune Condition?

[abbyw]

Hi,

I have had POTS for around a year now. I have read on this forum that it may be linked to an autoimmune problem. I have also had a white patch on my face for around three years. I do not have any other white patches on my hands or anywhere else. A dermatologist felt that it may be vitiligo, which automatically made me think of my POTS. (I used a cream on this precise area for a few months before it turned white, so I think it may not be vitiligo, but some adverse reaction to the cream I used. ) I have had my ANA tested, and it came back fine. Are there any other tests that can be done to reveal an autoimmune disease?

Thanks,

Abby

[arizona girl]

Hi abby, There are many tests for autoimmune diseases. It really depends on your symptoms as to which specialist you go to. A positive ana is usually associated with the rheumatic autoimmunes and hashimoto thyroiditis.

Other then the spot on your check what are your symptoms that make you suspect autoimmune disease?

[bellgirl]

Going to a Rheumatologist would cover all your bases. I'm awaiting blood work for RA, Lupus, Scleroderma, CBC, sed rate, Urinalysis, CRP, etc. Was just diagnosed with Fibromyalgia after having Trigeminal Neuralgia. Going to a nurse practitioner for the Fibro. I had lots of bouts of pains and aches. At first I thought it was my vitamin D3 deficiency, but I am back up to 45 on that.

[arizona girl]

Well that is not always true, in my experience, a rheumy didn't diagnosis me first. Skin biopsies done by my neuro, dermatologist and gyn diagnosed autoimmune neuropathy, autoimmune lupus skin lesion and autoimmune lichen planus, my rheumy only diagnosed a positive ana and it went no where. It wasn't until the other stuff showed up that my derm tested that pointed me back to the rheumy.

There are also autoimmune blood diseases, etc, that a rheumy would not check for. I so wish one specialist could have diagnosed and treated me, but they are so narrowly focused now that things are often missed if it isn't their expertise. I wish there was such a thing as master specialist, to manage my specialists. I have seven specialists and it is exhausting keeping up with them all.

So, Abby this why your symptoms are important they can point you in the right direction.

[jangle]

This is a question I'd like an answer to as well. I had a rheumatologist from before because I was ANA positive with Raynauds. However, I showed the study regarding autoimmunity to her and called her office and she would not answer my question as to who to go to.

Rheumatologists are typically the people you see for autoimmune diseases, but most autoimmune diseases involve the musculoskeletal system. For this type of autoimmune disease, you're going to need to see an immunologist or a neurologist who has an interest in treating autoimmune neurological disorders.

I've looked for immunologists, but the ones in my area predominately only treat allergies, and my Rheumatologist refused to help me.

[StandUpSitDown]

One suggestion: see if you can find a doctor who is willing to order this test from Mayo Clinic. It's probably not cheap.

http://www.mayomedicallaboratories.com/test-catalog/Overview/89904

[abbyw]

Thank you all for your responses. Other than the white patch on my face, the only other issues I have had is IBS and POTS. My POTS related symptoms are exercise intolerance with pre-syncope, dizziness, jitteriness and chills. My pulse rate goes up over 30 upon standing. I thought that perhaps diagnosing an autoimmune problem would explain where the POTS came from.

[arizona girl]

Hi abby, the symptoms your describing sound like Dr. Grubb's description of a hyperandrengic response to standing and/or exercise. Do you know if your bp also goes up to? It is also important to know what your bp does. You can google dr. grubb and hyperandregenic and read his articles. He often recommends a catecholamine test which measures first supine and then standing. Have you ever noticed if your legs change color when standing? That would be a sign of your blood pooling.

He suggests many causes for this kind of response mast cell is his latest, but small fiber autonomic neuropathy is another. The small fiber nerves control all your autonomic functions including your gi tract, which could explain the ibs.

Of course there are many reasons you can have sfn and autoimmune disease are just some of them.

[abbyw]

Hi,

My bp stayed pretty much the same, it was my pulse that went nuts.

I do not see pooling either.

I had flushing after eating once. Syncope once after running to catch a bus in my early POTS days.

It is so hard to be the one trying to figure this all out. I wish I had a doctor who knew something.......

Thanks,

Abby

[Relax86]

I had positive ANA and the pattern was nucleolic. Supposedly indicates scleraderma. I have had no skin issues from the start of this journey/nightmare. My endo ordered the panel then referred me to rheumy. Appt isn't until December. I've been sick for almost a year, and quite a bit better these days so I am prepared to wait. I am somewhat glad to find a reason for the POTs, but of course no one wants to find disease. My symptoms today seem to be more vessel related and specifically on the right side. I feel my carotid pulsing, burning, then I'll feel my right hand burning and see all the veins pop out and turn dark blue. It's a better symptom than fainting, or steadily taching with low BP's, or the internal tremors that I used to have so regularly, but I would like to know a little more about it and how to manage. All along I responded well to hydrocortisone so I suspected I was autoimmune. My endo said the doc I'm going to is a friend of hers and is great at putting together a puzzle...said this doc would patiently look for help for me. Fingers crossed and good luck to Abby and all

[bellgirl]

Glad to know you are getting answers. Prayers for treatment and getting a doctor to help you with your diagnosis.