Autoimmune screen

[thefreeprisoner]

Way back in early Jan when I decided I'd had enough and crawled through the doors of the local A&E, the neuro who saw me ordered 2 blood tests:

• autoimmune screen
• acetylcholine receptor antibodies

I'm due to get my results when I see her again on Wednesday. A bit nervous...

I know that the ARA test is to see whether I have myasthenia gravis, which seems pretty sensible, as the symptoms look pretty similar, although I don't have any difficulty swallowing nor do I have facial paralysis.

But... what does an autoimmune screen test for on the NHS? I got confusing and contradictory results from Google. Some mentioned globulins which I was interested in because I've heard people say things about them in ME sufferers.
Anybody had one?

Rachel xx

 

[Kati]

Rachel I suspect that the autoimmune screen is to rule out autoimmune diseases like rheumatoid arthritis, lupus, sjogren syndrome etc... Usually the rheumy would do this- A lot of the ME/CFS symptoms can overlap with autoimmune diseases so it doesn't hurt to get that ruled out.

 

[Athene]

I just found this thread.
Did they measure your ANAs? (Anti nuclear antibodies?)
Any results, and what did they say??

I have high ANAs (160, the max acceptable is 40) and I am still trying to understand the implications of this.

 

[faith.hope.love]

I'm curious too. My ANA was 1:320. I think my symptoms are more Lupus-like than CFIDS, but I don't have organ involvement (yet), so they felt more likely CFIDS. I wouldn't be surprised if later on down the road, I get a Lupus diagnosis. My knees (and sometimes muscles) swell when I flare, and I think that's more suggestive of connective tissue disease, opposed to CFIDS. I'm in no hurry to take a bunch of steroids and immunosuppressants, so I'm content with the CFIDS diagnosis until it can't be managed otherwise. Right now my doctor just put me on anti-inflammatories and doxycycline -- off label use as an anti-inflammatory and immunomodulator, not being used as an antibiotic right now. And I take cimetidine, which you can read about under the General Treatment section.

 

[zoe.a.m.]

Will be getting some similar test results this week myself. I've been waiting almost 2 weeks and I'm getting impatient.

I can't remember much of what was ordered other than the ANA and something called SPEP and CH5O (but there were several more including blood cultures). The office said if anything was of concern that they would call me, so I'm guessing everything is okay...? It's nothing short of exciting to finally see a doc who orders tests!

faith.hope.love, a lot of what I was tested for overlaps with looking for lupus. It kind of freaks me out as there is a bizarre comfort in things being "only CFIDS." Did they decide CFIDS because your blood work didn't look lupus-y enough yet? The more I read about doxy, the more I'd like to be on it long term. Unfortunately, it's on my list of allergies because it causes nausea that is intractable. This doc ordered a chest x-ray for connective tissue disease which was normal.

Oh, I don't know if this is the globulins referred to earlier, but I had IgG, IgM and IgA levels tested too (I think that's correct).

 

[faith.hope.love]

faith.hope.love, a lot of what I was tested for overlaps with looking for lupus. It kind of freaks me out as there is a bizarre comfort in things being "only CFIDS." Did they decide CFIDS because your blood work didn't look lupus-y enough yet? The more I read about doxy, the more I'd like to be on it long term. Unfortunately, it's on my list of allergies because it causes nausea that is intractable. This doc ordered a chest x-ray for connective tissue disease which was normal.

Well since I didn't have the Lupus anticoagulants or anticardiolipin, and my kidneys were fine, they felt it wasn't Lupus "at this time." They couldn't rule it out, but they didn't have sufficient evidence to say "yes" I have it. I don't have any skin rashes either. I've had something like the "butterfly rash" twice, but it hasn't come back. My problems are more like unexplained fevers, night sweats, mouth/nose sores, swollen knees, inflamed tendons/ligaments, and fatigue. I flare in sunlight like people with Lupus, but I also have recurrent shingles which flares in sunlight, so that doesn't necessarily mean anything. As long as my organs aren't being affected, I'm grateful for that. I can deal with the rest.

 

[JillBohr]

Hey Rachel,

Will you please let us know your results? I am very curious to see what you find out.

 

[ramakentesh]

Actually they could be look at whether you have autoimmune neuropathy which is believed to cause POTS in up to 50% of patients. The antibodies usually found in these cases is A3 acetylcholine receptor antibodies.

Not all autoimmune illness are detectable by screening - some such as Ankylosing Spondylitis as an example may or may nor demonstrate increased c-reactive proteirn or Tumor Necrosis Factor alpha - both of which have been implicated in the chronic inflammation associated with CFS