[Lorelei]

Hi, ladies!
Wondering if someone could give me some insight. My FP just ran some tests looking for lupus after a year of chronic anemia. I have been to Gastroenterology for a colonoscopy and endoscopy with negative results. I do have a twisted colon. So, no reason for anemia there or the digestive ills I have had since two years ago. I have had Iv's of iron it has gotten so low. I do have heavy cycles, but fibroids, hormones and such have been ruled out as a cause. The anemia is persistent despite a good diet and iron in vitamins. This spring I started swelling in the feet and ankles, also the lower legs worse than just a little puffiness. My fingers swell also and can't get my ring finger rings off. Hair is coming out and did so a year ago. Platelets are high, white count usually low, lymphs are low too. Also, have an unknown neuropathy that I have had for a long time, not sure if it is related. In addition, fatigue, migraines, asthma, sinus/allergy ills. My ANA was mildly positive, also the ANCA and IFI were positive. My doctor was out and another doctor was giving me info. I don't know what anything else looks like. They are sending me to Hematology first on the 10th and Rheum. is also a place they'd like me to go. Any insights or thoughts would be greatly appreciated. I am 41 and have two children. When pregnant and nursing my neuropathies went into remission. These symptoms got severe after my second pregnancy.
THANKS!
Lorelei

 

[Lily]

Hi Lorelei,

It's good they are sending you to hematology and also a Rheumy. Between the two of them they should come up with answers.

You have had your thyroid tested I suppose?

I'm sorry I don't know what the IFI test is. Do you know the titre on your ANA test? The ANCA suggests some kind of autoimmune process but further tests will be needed to see just what kind of process. It usually refers to some kine of Vasculitis, can be seen in Wegeners etc. Do you know if it was p-ANCA or c-ANCA?

Have you noticed any rashes, joint pain or mouth/nose ulcers? That's something that shows up fairly consistently in Lupus, even though we all vary in our presentation.

love
Lily

 

[Lorelei]

Lily,
Thanks for writing.
Yes, she has tested my thyroid twice and over the years --as now-- it is nearly working perfectly.
I think my ANA was 1:81 and don't know the ANCA score. A different doc was giving me the info. I usually ask for my own copies which I will do when I get to Hematology. I thought he said IFI, but like you, don't know what it is and haven't found anything in my research. He may have meant something else.
I also don't know if the ANCA was a p or c. What does the difference indicate?
I have joint pain in the hands, they swell especially the knuckles. When the feet, ankles and such swell they ache too and sometimes I have a generalized achy feeling all over. The neuropathy has always caused tingling, strange sensations and twitching. I do have some photosensitivity to sunlight with my eyes and will get the facial redness after being in the sun--not a sunburn. I don't have a ton of other rashes. I do have a lot of petechiae. What do you know about vasculitis? I have found that diagnosis when searching for ANCA. Am being seen at UNC.
THANKS!
Lorelei

 

[Lily]

Hi Lorelei,

Here's an article that explains possible disease associations with the two main types of ANCA.

http://www.suite101.com/blog/daisyelaine/anca_and_autoimmune_diseases

I just realised that the IFA probably means the testing method for ANCA - immunofluorescence assay-that's if he said IFA not IFI :wink2:

ANA is positive in around 97% of Lupus patients, but it's by no means specific, just a general prompt to run a whole lot of other testing and assess the patients symptoms. 1:80 is a very low reading, if you had glaringly obvious Lupus on clinical presentation they would possibly diagnose you, but without that there's a lot of detective work to do. It could be so many things with those symptoms.

Vasculitis is a very broad term, it can encompass anything from skin (which is not a big problem) to major organ involvement. There are other things that might have caused you to return a positive ANCA though.

Good luck with your appt and let us know how you get along.

love
Lily

 

[debatat]

Hi and welcome to the site. It is a very friendly place with loads of valuable information. I wanted to wish you well for your forthcoming appts. Have you kept a symptom diary and took photos of any rashes etc. These can be very useful.

Take care

Deb

 

[Lorelei]

Lily, Thanks for the link. It is a bit scary, some of those illnesses. Also, saw that lupus and some other diseases are associated with ANCA. I see that you have CNS vasculitis and lupus. Would you mind sharing how you were diagnosed?
Thx again!
Lorelei


Deb,
The diary is a great idea. I had planned to take a list of symptoms for the doc so I wouldn't overwhelm him. I have had to go through the "undiagnosed" problem with some other issues and really hope we don't go there with this problem. I haven't taken pictures either, but also a good idea.
THANKS!
Lorelei

 

[Lily]

Hi Lorelei,

My diagnosis took about 2 1/2 yrs for confirmation once I got to the right doctor. I actually see an Immunologist at a major university hospital who specialises in autoimmune diseases. The reason it took so long was it took a while for my bloods to turn positive, even though I had pretty typical symptoms of Lupus, at first they presented more like MS. So we had to go down that road and rule that out owing to the lack of blood evidence and confusing symptoms.

Once my ANA turned positive they started me on Plaquenil and I was already on anti-inflammatories and other pain meds. It all started coming together, the ANA, low C4 at first then low C3 as well, also a long history of red cell casts and protein on urinalysis and 8 out of 11 criteria for a diagnosis. I have no other antibodies although a lot of Lupies do. We are all different.

The CNSV diagnosis took about another year. The symptoms of that started coming together and 4 MRI's showed increasing lesions in my brain, however every time they checked they were not active, so it was hard to tell exactly what was going on. A lumbar puncture was neg for MS and everything else for that matter. An EEG was neg for seizures at the time I had it, even though they were happening intermittently and my doc had witnessed a few. Finally the 5th MRI showed active Vasculitis and that clinched it. By that time I was really sick and they stepped up my meds, put me on pred for a time and started me on Immunosuppressants.

Sometimes tests and bloods take a while to fall into place, despite symptoms. I actually had about 8 out of the 11 criteria for a Lupus diagnosis but still had negative bloods at one stage. Others get it on a few criteria and positive bloods, it just depends on the individual. A lupus diagnosis relies heavily on the whole picture, bloods + symptoms. That's why a good experienced doc is needed who will monitor you.

love
Lily

 

[Lorelei]

Thanks for sharing, Lily. Sounds like you had a difficult road to a diagnosis. I have been there with other issues and it is not fun. Lupus does seem to also be hazy in its presentation of symptoms. I will soon find out what my ANCA, ANA and whatever else was positive may mean. I might request my blood work until the appt.
Have a good weekend!
Lorelei

 

[Lorelei]

Lily,
Received copies of my blood work today.
RBC-3.51, HGB-8.9 and HCT-28.6 reflect the severe anemia that has been ongoing for over a year.
Low white count-4.9, limit is 4.5.
High platelet count, higher than usual this time. 624.
Low lymphs as always, barely there.1.1
ANA-1:80 positive, speckled.
ANCA-positive, perinuclear pattern
IFA is listed under the ANCA, but is part of the ANCA.
ELISA and RPRs are negative.
No other antibody tests were done, but I am sure more will be done.
Any thoughts on the above??
Again, symptoms and illnesses are swelling, warmth in areas of swelling, hair loss, anemia as above, migraines, aching hands and all over aching, asthma/allergies, GI issues, neuropathy-unidentified, chest heaviness that is not asthma, malaise, photosensitivity and fatigue.
Thanks for your input and sharing,
Warmly,
Lorelei

 

[BigSis]

Hi Lorelei (lovely name)
Apart from the allergies and asthma you describe my symptoms exactly.

I've had a definate diagnosis of Lupus for a few years. A DsDNA antibody level of over 200 was fairly conclusive this was during a flare though. Has this test been run for you?
My low Hb (8,) and white counts (2.1) responded very well once I started treatment (steroids initially)but still have to be checked frequently.
Platelets have been OK so far.

Good luck to you

 

[Lorelei]

Hi, Big Sis!
I haven't had that test run yet. I see Hematology first on the 10th of August and they want me to see Rheum. if more tests show it to be what it looks to be.
Do you also have vasculitis with your lupus? I see that the ANCA is usually associated with vasculitis/lupus or non lupus related. I don't think some of my symptoms totally fit vasculitis only though. I know it is hard to diagnose lupus and I hope I don't go the round of years. I have already gone a long time with the "unspecified neuropathy" diagnosis. They think I am nuts sometimes b/c my neurology tests are always so great!! What was your ANA?
Lorelei (thx for the compliment)

 

[BigSis]

Hi again,
No I haven't been diagnosed with vasculitis. I did have a MRI looking for vasculitis because of intractable headaches, but it was normal and headaches improved as the lupus became better controlled, along with the joint pain and hair loss. The fatigue persists
I'm embarrassed to say I don't know what my ANA was and it not checked regularly.
I tend to have high DsDNA and ESR, Low compliment levels, low RBC's and Hb and WBC. CRP is normal. All of which is fairly typical.

Good luck with the haematologist (NB English spelling )