High Ana Blood Test Results - Could It Be Mcas Related?

[jpjd59]

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.

Arizona Girl:

It is a different doctor that is running the autoimmune test. I don't see anywhere in the records where the doctor that wanted my daughter to have the IVIG ran a total quantitative immunoglobulin test, but I am not sure. Anyway, our insurance denied the IVIG for POTS. I'm really interested in the MTHFR gene test. I'll have to look in to that. Also, you mentioned a skin biopsy. No one has mentioned that. Would that be to check for a MCAS issue or autoimmune issue? Sorry for the dumb questions, but I am overwhelmed with all of this medical stuff.

Pam

[lillybits]

yes i had that done a year ago and it cam back normal I go back to froedert next week so hopefully they will be able to fugure some things out. they have me on the z pack right now hopefully that will level things out.

[diamondcut]

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 BS 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.

Just to update you on the MELAS thing.

I went to ER today because i felt so terrible on Verapamil, they did my full blood works re done and my lactase was normal so thats good news it rules it out. But I am still going down the immune system avenue and thanks for your input on this so far.

[arizona girl]

Lbits, it is a test that can be repeated if infections continue. One normal test does not mean it will always be normal. Couldn't hurt to have them do it again, if you have the opportunity.

Those of you who have an ana and your rheumy tests were normal, might consider the thyroid antibody tests. There is a good chance my hashimoto thyroiditis contributed to my ana. Also if you google the lupus foundation and ana they have a very good description on how an ana is interrepted.

Traci, the most likely cause of my ana is the hashimoto and or the undefined connective tissue disease UCTD, my endo treats one and my rheumy the other. I know also have a positive ssa and briefly had a positive sm/rnp which can point to lupus and sjogrens. Not enough to prove either at this point therefore the uctd diagnosis. It is treated the same though, I'm on plaquinel for it and synthroid for the hashi.

Pam, the results of the TQI test will show numbers for IGG, IGA, IGM. If that helps you to recognize it. For sure ivig is not approved for pots, it can be approved though for autonomic neuropathy w/antibodies and polyneuropathies. The skin biopsy test looks for small fiber neuropathy, which can't be found with an emg which only looks at large fiber nerves. The small fiber nerves include the autonomic nerves. My ivig is approved because I had low igg and no igm. My neuro uses it a lot to treat autoimmune neuromuscular diseases like ms and polyneuropathy.

I googled c4 and ana, and that looks like it is pointing toward lupus, it will be interesting to see what the labs say when they come back. As mentioned earlier you can also go to the lupus foundations website, it has very good information. There is a newer biologic treatment for it as well, steriods are usually prescribed but I had a terrible experience with them, so I avoid them.

Yes, that mthfr is interesting isn't it? Had no idea my cardio had order it, I also had a lot of inflammatory markers along with it. I see her again next friday to go over this in more detail, I'll let you know what she says. Women with recurrent miscarriages are also often checked for it. Pretty sure that it is why I have no children, inspite of fertility treatment. Don't know much about mcas, sorry.

Hope I answered everybody, let me know if I missed anything. Take care ladies!