jpjd59 Posted August 23, 2012 Report Share Posted August 23, 2012 I was looking over my daughter's medical records thinking that there must be something that we are missing and I ran across blood test results from last Winter from the Mayo that showed high "ANA". Anyone else have this? (We are thinking right now that she might have some mast cell issue going on - but so far all test results for mast cell clues have come back normal). Could it be some autoimmune mast cell issue?Pam Quote Link to comment Share on other sites More sharing options...
misstraci Posted August 23, 2012 Report Share Posted August 23, 2012 I have a really high ANA! I haven't had mast cell tests but would like to. I'm not sure about the autoimmune mast cell issue, I'm not very knowledgable about this topic but I did want to chime in and say that I had a high ANA like your daughter. Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted August 23, 2012 Author Report Share Posted August 23, 2012 Misstraci:Did the doctors explain to you what the high ANA means and how, if so, it relates to POTS? Pam Quote Link to comment Share on other sites More sharing options...
Mytwogirlsrox Posted August 23, 2012 Report Share Posted August 23, 2012 High Ana = autoimmune right? Quote Link to comment Share on other sites More sharing options...
roxie Posted August 23, 2012 Report Share Posted August 23, 2012 I have had a high ANA since I got sick. Sometimes ppl have it high & it doesnt mean anything. For me, most haven't thought much of it bc my other autoimmune indicators were normal. However, when I went to the geneticist to look into EDS he seemed to take the high ANA as a indicator towards in EDS Quote Link to comment Share on other sites More sharing options...
arizona girl Posted August 23, 2012 Report Share Posted August 23, 2012 Hi, ana is a marker for autoimmune disease. I have had high ana's off and on for years. Autoimmune disease can attack the small fiber nerves and cause autonomic dysfunction. After years of so called normal tests and not looking further, my ttt open the doors for deeper testing. First we found through skin biopsy I had autoimmune small fiber neuropathy, then I had a round of anemia and infection and we found the immune deficiency. I'd also been showing signs of thyroid disease and autoimmune disease like lupus/sjogrens.Only recently found out that the high ana's are often found with hashimoto thyroiditis. My tsh has always been normal, so no one checked my antibodies. In a work up for sjogren's that doctor did a tpo/ab test for hashimoto and guess what it was positive, hashimoto can also be hyper or graves disease, so that antibody should be tested for too. So you can have a normal tsh and still have thyroid disease. Thyroid disease can also cause a high heart rate. After these findings a rheumy also diagnosed undefined connective tissue disease and a vaginal biopsy showed I also had autoimmune lichen planus which was contributing to all the yeast and bv infections I'd been having since a teenager.The good news is with treatments w/ivig for immune defect, synthroid for thyroid, plaquenil for the UCTD my HR/BP are almost normal now. I still feel uck but my labs are showing improvement.There is also a gene that you might want to look at. MTHFR if you have the abnormal form of it, it can cause many medical problems and the treatment is by passing the defect an treating with the active forms of folate and b vitamins that are the methyl form. I wonder had I been getting those supplements all those years ago if I would have gotten so sick.Good news though for your daughter if you can figure this out now, she may have a much better quality of life.Also the ana test may have had a description describing it's titer, that description can point to a specific type of autoimmune disease.Hope this helps sounds like you need to look down a new path towards finding her cause. Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted August 23, 2012 Author Report Share Posted August 23, 2012 Arizona Girl:Thanks for the info! Would my daughter need to go to a genetic counselor/doctor to be tested for that gene? Also I noticed that the doctor recently did complement testing and C4 came back low. Again, I have no idea how this all ties in together (if it does). Of course her doctor is on vacation this week so I guess I'll be contacting him next week to see what he thinks.Pam Quote Link to comment Share on other sites More sharing options...
arizona girl Posted August 23, 2012 Report Share Posted August 23, 2012 Well my cardiologist did the testing. If you do a quick google, you can pay out of pocket for the test as well. Health diagnostics I think is the lab that did mine. I am going to go see a genetic doctor, that is in october. I figure if I have one gene defect I probably have another one too.A low c4 is another pointer towards autoimmune or immune deficiency. Maybe google that and ana and see what pops up. Has she had a total quantitative immunoglobulin test done yet? Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted August 23, 2012 Author Report Share Posted August 23, 2012 Arizona Girl:Wow, you are a wealth of info!! I really appreciate it. I'm sure you can understand how frustrating this can be. I would much rather be feeling sick than watch my daughter do through this. I don't believe a total quanitative immunoglobulin test has been done yet. I do know that one of my daughter's doctors ordered a blood test last week to test for some sort of autoimmune issue but he did not tell me what the test was called. We should have those results in about another week. So it looks like we will have to wait for those results to see what the test was and what the results are.Pam Quote Link to comment Share on other sites More sharing options...
diamondcut Posted August 23, 2012 Report Share Posted August 23, 2012 I was wondering if you can have a normal ANA test but still have autoimmune problems/conditions going on that would need further more in depth testing? I was told i have a high Lactase in the blood but no abnormal acidity level which the dr said was "strange" but nothing to worry about......hmmmm i think we have all heard this before? Quote Link to comment Share on other sites More sharing options...
arizona girl Posted August 23, 2012 Report Share Posted August 23, 2012 I just went and looked at your topics as I had forgotten the details about your girl. We've posted before about ivig.That total quantitative immunoglobulin is a must before ever starting ivig. What type of doctor was considering that? Is that same one that is running the autoimmune tests? If so the guy sounds like he is up on stuff.Didn't realize you were in san fran area my sister lives in stinson beach. If you decide you want a skin biopsy done, my neurologist here in az specializes in them he also knows how to screen for a lot of stuff that isn't on other docs radars. He also may know someone in your area.That cyp2 test you told me about was also on that health diagnostic tests with the mthfr gene, there can be a combination of those two genes that cause problems as well. Mine was normal, but I was homozygous for the mthfr which is just as bad as the combo.Well I can say this I wish I had, had a parent who was as concerned, involved and caring about me and my health. I was a kid of divorce and our needs were lost in the uproar. Though I now know I have had symptoms all my life they really started to show up again in my 20's. I am now a young looking 55 and we have only figured it out in the last few years.If we can get your girl turned around now so she doesn't have to go through what I did, what a blessing. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted August 23, 2012 Report Share Posted August 23, 2012 DC, a postitive ana is only one marker for autoimmune disease. It does not have to be positive to have an autoimmune disease. Autoimmune diseases are found in many different medical specialties. Endocrin, Neuro, Hematology and rheumy, which is were most people start.I noticed your diabetic. High blood lactate in the blood can happen with diabetics. You can get something called lactic acidosis. I don't know if it requires that you have abnormal acid in other lab tests. If you look it up you can read if you are experiencing any symptoms of it. It can be very serious, so I'd look into that if I were you. It can also happen as a result of medications. Quote Link to comment Share on other sites More sharing options...
lillybits Posted August 23, 2012 Report Share Posted August 23, 2012 all that info is great! i have high ana, along with the seeminly endless medical issues. we have been trying to figure out where i have all this going on and my mom has graves but i got my vascular eds from my dad. to add to my day i went to the doc and now have pneumonia, passed out walkig down the stairs and now have a broken ankle. yae meee ha ha .kim Quote Link to comment Share on other sites More sharing options...
diamondcut Posted August 23, 2012 Report Share Posted August 23, 2012 Thanks Arizona girl, they actully found ou the high latase becuase i was in ER with very high BG levels, but what they couldnt understand was why my acidity level was normal nd once they had flushed me through with Saline twice and my sugar levels were stable my lactase was even higher! The dr sadi its either, the diabetes, fluke or MLAS (which isnt so nice) hence why i have been asked to see a Immunologist soon. Thanks for letting me know just becuase an ANA comes back normal that is not the end of it. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted August 23, 2012 Report Share Posted August 23, 2012 Kim, Have you had your total quantitative immunoglobulins tested yet? Your list of medical problems are often found with a primary immune deficiency. This test done now while you are sick would be an ideal time to do the test. Mine is called cvid if you want to look it up. A good website is primaryimmune.orgI have found rocephine antibiotics shots to be more helpful then oral antibiotics when I get an infection. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted August 23, 2012 Report Share Posted August 23, 2012 DC, what is mlas? So sorry your dealing with this. Quote Link to comment Share on other sites More sharing options...
diamondcut Posted August 23, 2012 Report Share Posted August 23, 2012 Sorry my spelling is a shocking tonight, Im not doing too good tonight, I meant MELAS http://en.wikipedia.org/wiki/MELAS (i figure whats another one anyway, they cant cure it lol!!! Im not convinced i have this, but i know something else is going on.This week i had my GP re check my lactase and it came back as "can not be tested" Great!!!From the autonomic testing i had done i was assured i have no form of diabetic nueropathy involvment in my POTs, Im not so sure but that was the UK's expert in POTS who told me this. This year i am convinced it is not just the EDS playing a role here, i am so sick so often, most times i come away from the local drs surgery i pick up a virus of some sort. Every new this year drug barr clonazapam and botox has made things worse, Im on day 2 of such a low dose of Varapmil and i have chills already. You know when you just know in your instinct they are missing something major, hence why i have pushed for an Immunologist and Geneticist. I dont really know what to say to the Immune expert when i get there even!!! But the fact that just becuase your ANA is negative does reasure me i am not imagining things here. Quote Link to comment Share on other sites More sharing options...
diamondcut Posted August 23, 2012 Report Share Posted August 23, 2012 all that info is great! i have high ana, along with the seeminly endless medical issues. we have been trying to figure out where i have all this going on and my mom has graves but i got my vascular eds from my dad. to add to my day i went to the doc and now have pneumonia, passed out walkig down the stairs and now have a broken ankle. yae meee ha ha .kimI was starting to feel really sorry for myself and hard done by in life, then i read your post lol You just watch and see how much sympathy you have for that broken ankle now!!!! You will be like - my broken ankle will heel people!!!the rest of me wont lol!!! I only say this becuase i broke my finger last year and with everything else wrong with me it really didnt matter and i was like "so what its a broken finger? if only that was my one problem".......we are tested at times!!!! Quote Link to comment Share on other sites More sharing options...
misstraci Posted August 23, 2012 Report Share Posted August 23, 2012 Sorry I'm late to respond, I think everyone else answered very well as to what it means but my dr said I should see a rheumatologist for it. It could suggest rheumatoid arthritis, lupus, etc. He said a lot of young females have a high one but no condition, so, just random high ana. No one ever did anymore exploring to figure out why mine was so abnormal, so, I don't know what to say about it really, just know that I have it. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted August 24, 2012 Report Share Posted August 24, 2012 Traci, It really depends on what type of symptoms you are having and if your current treatments are helping or not. IMHO an ana should be throughly worked up if you are not well. If you feel great then no worries, but you are here on the forum for some reason, right?Yes, the first line doc for an ana is a rheumy. Young women are not the only ones that have one either, I had one when I was young and I now have one again and I am 55 and have a boat load of immune problems that are being treated by endo, rheumy, neuro, cardio and gyn. So an ana is not just a marker for rheumatic autoimmune disease, but can be associated with many specialties.For many years docs didn't really know what kind of marker an ana was so they blew it off. That is no longer true, though some docs that haven't had continuing ed may still believe it is insignificant. I heard the same type of thing from my docs back in the day. I believe it may be one of the earlier markers the immune system is going wrong.DC,Whoa, that ml thing sounds terrible. Do you have all those symptoms? I noticed you mentioning infections and one thing that concerns me is the mention of botox. If you have a defective immune system, you might not want to have botox, as your body can't effectively fight it off. I also think you might be confusing autoimmune disease with an immune deficiency. While they can be found together testing and treatment for them are entirely different.If you are getting a lot of infections. The first test is the total quantitative immunoglobulin and sub igg panel, maybe ige and igd. As mentioned earlier you can read up on immune defects at primaryimmune.org. If someone has one of these they should never have any kind of live vaccine or neurotoxin. Quote Link to comment Share on other sites More sharing options...
issie Posted August 24, 2012 Report Share Posted August 24, 2012 Diamond,That might be a big key for you - the MELAS. It has to do with NO levels evidently - with the suggestion of arginine. There are several things in that DX that would suggest POTS symptoms. If you want PM me. I don't want to get off this topic too far. There have also been those to find that using B2 has helped tremedously with miagraines. And the CQ10 helps with mito and energy type things. Look into those suggestions on the wiki page. I have normal ANA and have hypogammaglobulinemia - at IGG subset 1 level and also am now having auto-antibodies coming back with positives.Issie Quote Link to comment Share on other sites More sharing options...
issie Posted August 24, 2012 Report Share Posted August 24, 2012 Forgot to add --- with the new med that I'm taking - Diamox - it causes you to be too acidic. I swear that is almost as bad as POTS symptoms and very similar to POTS symptoms. I have to do a ph test several times a day and make sure I stay alkaline or else I feel awful. So, being too acidic with your ph may be something of great interest.Issie Quote Link to comment Share on other sites More sharing options...
diamondcut Posted August 24, 2012 Report Share Posted August 24, 2012 Thanks for all info, I have tried reading up primaryimmune.org. and those types of sites and I feel whether its an auto immune deffiency or desease it needs to be looked or atlease ruled in or out! As far as the MELAS goes the Dr said it could me a fluke, the diabetes or something more serious like MELAS being present. I have symptoms of it yes but the trouble is i have symptoms of so many things when you start reading, i can not be satisfied that the fact the Lactase test came bac as "can not be tested for" though. Im hoping my referral will not be too long. Quote Link to comment Share on other sites More sharing options...
misstraci Posted August 24, 2012 Report Share Posted August 24, 2012 Arizona Girl, Thank you. I would like to look into it further. I hate being told, "that's normal", "most people have that", and all that garbage, it sounds like the story of my life, that AND, "its' just something you'll have to learn to live with". I get so frustrated with teh medical field, they are just ridiculous sometimes, not everyone, but the people I see I guess. If you don't mind me asking, what conditions are you being treated for or currently have and which of those pertains to the ANA stuff? And you're right, I am here because I feel and live terribly, I'm constantly trying to figure this out (my being sick that is).Thanks Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted August 24, 2012 Report Share Posted August 24, 2012 Wow,this is a wealth of info. Thanks to all of you for posting.I too have a positive ANA but all the individual antibodies my dr checked for are within normal limits (dsDNA, ssDNA, Ro, La, RNP, Sm, Jo-1, Scl-70 etc), my complement levels are also fine, so are my inflammatory markers (CRP and ESR), rheumatoid factor is OK, and also my lg A lg G and lg M are all fine.I was on a beta blocker at the time of the testing, and I've been told that some people develop a positive ANA while on betas.It may help to ask your dr for an ENA panel (where they check for individual types of antibodies) if it hadn't been done already.I hope you'll be able to figure out what goes on and find proper treatment for the condition (if any) - as sometimes POTS gets better (from what I read) if the underlying condition is properly treated.I'm still struggling and trying to convince my dr to do further tests, even though to be honest I have no idea what other tests can be done...Good luck to all of you.bestAlex Quote Link to comment Share on other sites More sharing options...
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