Introduction to me

[ScienceGuy]

Hello everybody! I'm going to share my shockingly typical AI story with you all. I am a middle-aged male with some type of autoimmune disease/diseases.  I am several years into a intermittently painful and chronically frustrating journey through symptoms and medical silliness. 

Starting six years ago when I went to my PCP with joint pain, my PCP referred me to a rheumatologist.  My first rheumatologist diagnosed me with MCTD (positive ANA with anti-rnp). He did seem somewhat skeptical due to my lack of Raynauds.  He put me on plaquenil which led to some improvements. 

I had to change doctors due to insurance changes leading to rheu#2.  He told me that he didn't believe the diagnosis of MCTD and took me off the plaquenil.    He told me the symptoms I had described were "normal  for my age".  Yes, I know people my age running marathons and I can sometimes barely get across the room.  It does not seem normal for my age.  This appeared to be an exercise in "disproving the exception" by a scientist rather than any effort to help a patient.  I never returned obviously.

I was referred to rheumatologist#3.  He began by pushing the idea of fibromyalgia and sleep deprivation.  He ordered blood tests including Vit D.   As usual, positive for anti-ds dna, but now also elevated uric acid, and very low on Vit D.  Next visit showed positive for SSA.  He refers me to a local research operation about being evaluated for sjogrens.  Sjogrens makes some sense with the positive SSA and my chronic dry mouth.  Blood tests find elevated liver enzymes.  Follow up visits and more tests show anti-smooth muscle ab and possible "autoimmune hepatitis."  So, visits upcoming regarding sjogrens and liver issues.

There is no way to describe how frustrated and depressed I am with the whole process. No real diagnosis and no treatment right now.  People reading this here will understand the frustration I'm sure.  Somehow knowing that other people have similar experiences is helpful, so I joined the forum despite having a strong diagnosis of sjogrens yet.

[Pisces24]

We all here totally understand your frustration!  Quite a few on this forum are Sero-Negative for SJS but have a dr who still treats them for it.   We Soggies just don't fit the "textbook" definitions/symptoms for a lot of specialists and most we find don't want to really do the work and some lack even the expertise.

Me my SS-A, SS-B and ANA were sooooo high that there was not doubt BUT it took me 6 years to find an intelligent dr would would work to find out what was wrong. I finally got diagnosed at a research/teaching hospital here in Iowa - University of Iowa Hospitals - and would recommend these type hospitals to anyone. They actually did the work and didn't have to diagnose me out of a textbook. No G.O.D. complexes and all my ologists are there and intereact with each other.

I'd suggest go to a different Rheumy until you find the right one. In my 6 yr "journey" I saw many specialists. I heard everything from "I think it is some type of cancer but you are not sick enough" to "it is probably something you got from your cat" and I didn't have a cat then!    Hang in there and at some point your wil lfind the right doctor.  Good Luck and Welcome to the group!

[Cheryl]

Science Guy,
Rheumy #3 sounds as if he is on top of things - looking at all possibilities and trying to get you some help.  I'm sorry that you are having these symptoms.   Hang in there!
Cheryl

By the way, you are welcome here, with or without a dx 

[dbab]

Hi ScienceGuy, Welcome... We almost have the exact same positive antibodies except for the anti-RNP.  I'm also positive for SSA, anti-dsDNA, and anti-smooth antibodies (although my liver enzymes are ok).  Have you been to a hepatologist to do a workup on your liver?  I just went through an MRI to rule out any AIH issues at this time.  Anyway I know the process is frustrating.  It can take time so just be patient, I know its easier said than done but it looks like your doc is trying to get you some answers.  Glad you are here for support, looking foward to more posts

[Carolina]

Hi Scienceguy:

And welcome to the wonderful world of Sjogren's (or Sjogren's wannabes like me).

Just hang around.

Welcome.

Keep us posted.

Hugs

Elaine

[jcbritguy]

I'm in the chat room if anyone wants to chat up a bit -

[Scottietottie]

Hi ScienceGuy 

Welcome to Sjogren's world. There are many of us who had quite a journey before getting a diagnoses. The label almost came as a relief. My GP had me branded as a raving hypochondriac but really had to back down once I was dxd.

I hope you find the site useful. You'll certainly find it friendly and supportive.

Take care - Scottie 

[Joe S.]

Welcome ScienceGuy. You will find a lot of information on this site. Some of us have posted what we are taking in our signatures. I have had bad reactions to traditional medical treatments. Because of this I have chosen alternative treatments. I suggest that you use our lists and do your own research to find what works for you. ALA - Alpha Lipoic Acid, ALC - Acetyl L Carnitine.

It took many years to for me to find what works for me. I hope it goes easier for you. The sooner you can manage your AI disease the better you will feel. If you wish to PM me you can but I do not agree with the cause and treatment of AI diseases the fit typical western medical modalities.

[mnlana]

Dear Scienceguy,

Thank you for posting.  I amnew to this site and I was just also saying how depressed I was after a recent doctor visit.  They never really know what's wrong with you do they?  Also I love it when they tell me that "everyone goes thru these things as they get older".  Hello, i'm like 38 years old, thin, and active!

Sounds like you're on your way though.  hang in there!

mnlana

[cremer]

Hi and welcome to SjogrensWorld.

My advice would be to get back onto Plaquinel, you said you started feeling better, so the quicker it gets into your system the better.

Like yourself I'm a male aged 45 and have SSA and SSB, ANA of 1:640, high liver emzynes and feel alot better since being on Plaquenil.

Mick