High ana titer >1:1280, ena negative

[MatPatP]

Dear people,

First of all, I am sorry we are srtuggling :(!

My battle started two years ago with extreme fatigue, such exhaustion that I could hardly get up and walk to couch from bed. I had horrible palpitations all the time, half dizzyness, arythmia, lightheadedness, and a feeling of being attacked by some strange heet, like in virus.

After month and a half and some usuall blood tests, kardiologic exams, holter and ergometry, the state got better and I was diagnozed with mitral valve prolaps, pannic attacks and gastric problems.

Since than I am better but not my self. I am teeribly tired. I have no energy to train sport any more. I hardly manage to work and then I need much rest for another day. I have some strange "visual auras-scintilating scotomas" that are as freequeng as few a week, sometimes 2 per day. I have brain fogs, zaps... I sometimes forget things that happened(only two occasions). I feel strange unstability in my feet and hand wrists(fingers), like weekness. My sholder hurts like I have twisted it and I cant fully move it(I cant bend it behind my back). The joint of one of my fingers hurts and I have some strange white spots on my nails since few months ago. I also have constant vitamin D deficiency last few years, all other vitamins are fine. I have shakiness/tremmors in the mornings and episodes of sudden weakneses sometimes with no rule.

And most of all, I am sick of it!

All blood tests were mostly normal so far, besides Vitamin D and constantly high eritrocites(microcite anemia of unknown origin).

And now my doctor gave me ana and ena since she is trying to conclude what is wrong with me.

Ana returned highly positive >1:1280, but all ena is negative. My pattern is homogenus.

Also, my tyroid gland looks in ultrasound as I have Hashimotto, it is big and inflamed, but tyroid antibodies are all normal.

My question is: does what I wrote seam autoimune to you? Can ana be so highly positive without indicating autoimune desease? What can cause my tyroid to look as it looks like without it being Hashimotto?

Thanks a lot to you all and may we all overcome all our health issues :***

[Melba1]

Sorry you’ve got so many unpleasant symptoms ☹️

Has you GP/ PCP (sorry not sure what country you’re in) referred you to a rheumatologist? With an ANA that high and your symptoms you definitely need to be checked by a rheumatologist. People can have raised ANA and be healthy but you’re not feeling healthy so it all combines to make a picture of what is wrong. And that is quite a high ANA so more chance of indicating autoimmunity.

It might not be lupus but you need some medical help and answers for your symptoms whatever it is and a rheumatologist would be a good to start.

Good luck x

[MatPatP in reply to Melba1]

Thank you very much!

I ended up here because I was googling what can be the cause of such high ana but no ena.

I have reumathologist examination next tueseday, so he will probably have more to say. Reumathologist I will see is also imunologist and internist, so I think he could clarify at least something for me.

Thanks again and all the best to you!

[NeuronerdDoaty]

I totally agree with Melba.

[Hidden]

I agree with Melba too. The higher the titre of ANA the less likely it is to be just a coincidence. The enlarged thyroid sounds not right either. Good luck getting to the bottom of things and don’t give up until you’re satisfied about what’s wrong.

[MatPatP in reply to Hidden]

Thank you very much for your answer.

I will not give up till I find what it is, because it really bothers me for the last two years and that is not a little time..

Thanks again and all the best to you

[CecilyParsley]

Hi I feel so sorry that you are so unwell. You are ill they just have not found the cause yet. I hope your Rheumatologist can provide some answers and that you get some relief from the relentlessness of it all. Please let us know how you get on

[lupette]

Please could you post again after your visit to the Rheumy doctor? I would like to know what he/she thinks about all of this! Thanks!

[MatPatP in reply to lupette]

I will post here as soon as I get his oppinion :).

[Mifford in reply to MatPatP]

Ditto the above - I’d be interested to know what your rheumatologist says and fingers crossed you start getting some answers. Good luck

[MatPatP]

Hello dear people,

As promissed, i am letting you know what my reumathology doc said.

He suspects Sica syndrom(Sjorgen, I guess), but he said he is far way ftom diagnosis, since many tests are to be done and observations to be made.

He is worried because I was active in sports, and then suddenly, since two years ago, I have no energy to train properly any more and I am constantly tired. He is also worried because my joints are making many cracking sounds, and because I have some strange pains in wrists sometimes(especially when excercising). Also, he is worried because I had few years ago two unexplained inflammations of salivary glands(didn't even think of it untill he started questioning me).

My eyes are also dry most of the time, but that can be because I work with computers, but he wishes to see the real cause of it.

He recommended salivary glands scintigraphy and Schirmer test for the eyes. Also HLA typography(A,C,D), RTG of my fists...

I hope I don't have that Sjorgen thing, but if I do, at least I will know what causes my fatigue and weekness.

I just hope someone tells what it is so that I can get better and do things I did before(sports, mountains...).

Many luck to us all