Can it be autoimmune?

[MatPatP]

Hi all,

I hope you all are doing as fine as you can.

I have written here my story previously with strange episodes I have been experiencing for the last 2.5 years. It started with sudden arrythmias, extreme tiredness(i couldn't make 500 meters without calling ER), and a feeling of "fever" in my eyes. Also, I had stomac problems, nauseas etc...

The episode lasted cca month and a half and then It gradually got better, but never entirely fine since.

In last two and half years new simptoms appeared: Raynauds phenomenon, Dry eyes, dry nose channels, feeling of too little saliva in my mouth(but not entirely dry), legs numbness, lack of strength. Extreme tiredness that is better after rest, muscle aces, as if they are constantly inflamed and I get terrible muscle fevers after excercising simple excercises.

I have made following tests:

Schirmer test: 0mm tears in both eyes, disagnosis Conjuctivitis sicca

ANA titer highly positive: 1:1280, but all ENA negative and low(1,2,7...), only anti-RO 24(but that is still negative).

EMNG - made for legs numbness- showed mild positived for Myastenic syndrom and polymyositis.

I have another neurology exam at 28.02. I will probably have to do Prostigmin test and antibodys for Myasthenia.

Regarding Sicca I need to do Salivary Glands scyntigraphy at April.

Uf! It takes so looong to get dyagnosis. I am from Croatia and here if you go privately to Neurologist or Reumatologist and if you need to enter hospital(For Prostigmin test for example) you need to do all exams you did privately all over again at Hospital Neurologyst :(!

I also have arrythmias, bradyardia(50-55 bpm heart rate) and Mitral valve prolaps with regurgitation 2+.. So I wonder If I ever do need stereoids, can I even take them with Bradycardia and arrythmia? Does someone here has similar conditions?

Thank you all!

[Olderkitten]

Hi, you have a lot going on and several things you mentioned are signs of Lupus or Scleroderma. It's taken about 5 years for me to get a diagnosis of Lupus and Scleroderma. Dry eyes, extreme fatigue, pain and weakness and memory loss and Reynauds phenomenon. What are your doctors doing about your heart? You must be on some kind of medication?

[MatPatP in reply to Olderkitten]

Hi Olderkitten,

Thank you a lot for your reply!

I am not on any heart medication since I have bradycardia and beta blockers would lover even more my heart rate. My cardiologist was thinking of giving them to me nevertheless when that "flare" happened to me 2.5 years ago, but in the end, after 24h holter to monitor arrythmia(that recorded cca 3000 sves and 950 ves) decided that I can go without them. I was then also diagnosed with Mitral Valve Prolaps 2+ regurgitation, but doc said that it cannot be the cause of such fatigue and exhausion i felt at that tim. I am soon going to cardio control again and will show to my doc theese new results:"raynaud, schirmer, ana" and ask if my epizode 2 years ago maybe could have been caused by any of theese.

I am actually a bit angry because, when I had that "flare" 2 years ago, and couldn't make 500meters without extreme fatigue and almost fainting, no one saw fit to make some tests that I have done only after 2 years of not feeling so much better. It is such a long way to get diagnosed.

I cannot believe it took you 5 years?!!

How were your ANA and Lupus and Scleroderma ENA in thoose 5 years? For me ANA is pretty high, but all ENA is negative.

Thank you very much!

[Olderkitten in reply to MatPatP]

Hi MatPatP, I also don't understand why nothing is done when your obviously have a problem. My Rheumatologist said it sometimes takes a while to diagnose autoimmune diseases and since I had no idea about any of it I had no choice. I think she's a good doctor, caring and doesn't jump to conclusions. Right now I'm having a very hard time with reflux and vomiting and diarrhea, not a pleasant topic, and I had second endoscopy and the Doctor took lots of biopsies and everything came back negative! This can't be! It's not normal especially since it's been going on since September last year. I'm going to see him Friday morning to discuss where to go from here. Also think I have a blood clot in my leg because pain is horrible, difficult to walk, had ultrasound yesterday but I haven't heard anything yet. I'm so frustrated with all this waiting and worrying. Ok, enough about me,I hope your getting the help you need. I'm glad I joined this group, I've learned things from so many people who are in the same boat.