help me figure things out pls

[Blury]

I have suspected for a couple of years that I have sjogren's
But not typical in the sense of my mouth being dry. It seems to affect my skin the most, it feels inflamed alot of the time, my hair follicles hurt when i rub my head or beard and i go through stretches were my skin become very itchy, my armpits and around my bum get inflamed easily,  i sweat perfusely from my neck and for head with very little exertion. I also get flushed in the face for no apparent reason. I also suffer with dry eyes when I wake up in the morning but seems to get better through out the day.

Most of these symptoms started about 3.5 years ago when I went to the hospital for a panic attack and was told I was having a heart attack, so I had to get a angiogram done, everything came back good so they called it myocarditis? (a doctor also mentioned maybe it was a artery spasm).
But after that test I notices that my eyes were really getting dry and my face was flushing almost constantly. I told the doctors that I thought I was allergic to the contrast dye they used but they said that after a few hours it was highly unlikely . So about two months after that I was still having symptoms and it even seemed to move down to my digestion which seemed really slow and could get down very much food, my face would still flush everyday. So I went to the er were one doctor seemed to believe me and gave me a high dose of prednisone to take. The prednisone stopped the flushing and seemed to help with my digestion issues.

Through this all I have been on Dr. Google alot. First I came across mastocytosis but didn't really fit everything there, but that lead me to vascular Ehlers danlos syndrome,( i have very large viens on my hands and have had veins collapse when getting blood work done . so i finally got sent to a genetices for testing, only to be told  that I didn't have it and they werent going to test me. So I was starting to think maybe this was in my head and making me anxious and causing symptoms.

But then I came across sjogren's and alot of stuff added up, so I got my doctor to send me to a rheumatologist, and after six months of waiting, he told me I didn't have this and wasn't going to persue testing. So I went to a naturalpath and got them to do some blood tests, it turned out my ANA titer is just on the border but the one for lupus was at a 7 which is high. my Ro or la are normal. So I got another referral to another rheumatologist and waited another six months. Only to have him be more concerned over who did the Blood work on me, then if i had sjogrens

[Blury]

Since seeing all these doctors, i have had a few diagnosis.
i saw a ophthalmologist and was told i have inflammation of the veins at the back of my eyes.

i saw a gastro doc and had a colonoscopy and endoscope done and was told (and saw on the tv screen) that i have small ulcers through out my large and small intestines and asked if i had chrohns, but that was the end of the conversation and never ended up getting a diagnose, but got sent to get a mri done to look for fistulas.

I saw a allergist and was told i have dermagraphia and have a whole list of things im allergic too

Out of blood work that i have gotten done, there has just been a few things off, one being my testosterone which is at a 7.9 (which is low for a 35 year old man), my cholesterol is high too

So this bring me to now, things feel like they have gotten alot worse in the last few months, I seemed to have started having high blood pressure all the time and i think it's because of dysautonomia (Baroreflex failure) .
I have read up about it online. i have always had good blood pressure but now it seems to hovers around 140 over 87 and can go up into the 200s with a panic attack (one time when i was in the hospital i look over at my blood pressure and saw 145 over 55, i guess that was just an off reading though)

another thing that i have been going through these past couple of months, is breathing problems especially at night when im going to bed. its a strange breathing problem though, i know my o2 is normal and i dont feel light head, it feels like maybe my gases are off, i know what hyperventilation feels like,and  its not that. i also wake up sometimes and see patterns on walls for a minute or so.

i am starting to feel hopeless, ive been through the doctor gantlet and know that i would have to wait another half year or longer to see another specialist. its feeling alitle discouraging  to tell you the truth, i feel like if my body cant regulate my bp, im not to sure the doctors will have anthing for that. i love life and have a good one but just feeling like im not sure how im going to manage from here on. i feel like maybe i should just wait till i have to go to the er for something serious and then they will have to deal with me , but if it is sjogrens, i dont want it to do more damage and i want to be proactive.

any thoughts on this would be appreciated


Cheers

Trevor

[irish]

I am sorry that you are having such a hard time. You have a lot of things going on plus it seems like you are doing a lot of searches online trying to find a diagnosis. I think it would be prudent for you to just take your records to a new doctor and ask if there is something that can be done to further investigate these health issues.

I would avoid telling the doctors all the things that you think you have. Telling them an over abundance of information clouds the picture and the doctors have a hard time sorting it out.

I would advise that if the colon issues are documented and the Lupus bloodwork is high that this would be a good place to start. I will add that searching the internet can really get us upset and chasing down the wrong path. It also causes docs
to choose not to get too involved because they don't like patients playing doctor. It is good to be informed but is wise to back of cause it makes doctors think we are hypochonriacs. This is something that most people with chronic illness have to learn to control on the way to diagnosis.

Just hang in there and good luck. Many of us had to wait years to get a diagnosis as autoimmune issues are very hard to sort out. Good luck. Irish

[lorigacc]

Such a fine line there.  It is always wise to be informed, and learn all you can about the issues you deal with. Sometimes, I feel like I am forced to do so because of doctors who just don't do their job.  I know they don't like it when patients do this.  Sometimes you have to fight for yourself though.  2 years ago, I had to fight and cry for doctors to believe me.  I knew something serious happened with my back.  Finally, a neurologist ordered an MRI and found 3 fractures.  No one else would listen. They said I likely pulled a muscle and were ordering physical therapy, which could have had negative consequences.  I think I will always try my best to understand my medical issues, and not be afraid to stand up for myself....guess that doesn't make me the ideal patient