Hi ya'll! 24 y.o. male suspecting Sjogren's. Coping, afraid but seeking advice.

[paulc182]

Sup everyone!
The name's Paul. I came across the forum after recently suspecting SS and I was wondering if ya'll can help me out a bit. I supposed I'll start by telling me a bit about my background. (Skip to the 2nd paragraph if you want to know about my condition).

I was born in Taiwan and moved over to California when I was 4 and have been going to school/working in the bay area. I currently reside in San Francisco and have been since college. Up until mid-2016 I was a pretty healthy individual. I got myself involved in a weight lifting injury and that was the start to everything bad. It caused me all sorts of odd pain in the area as well as the groin for 3 months. Clinic told me it wasnt a hernia like I suspected but the pain was so irregular compared to previous sports injuries and kept me paranoid, it just felt like an odd ambiguous strain. Between this and new job, getting sick twice w a cough that aggravated the injury, as well as teeth cavities/sensitivity issues(which I actually dont think were caused by SS as they were there before), I started developing odd symptoms in September.

At work I started getting neuropathy in my hands and feet. It went from tingling>aching>burning>numbing and I even ended up with vision blurring and motion imbalance. And with this I immediately booked a flight to taiwan where my parents resided to get my condition looked. Healthcare is great here and I had nothing back home.
Went to a neurologist and she prescribed me B12 for the neuropathy which helped quite a bit. Even though my B12 serum level was 596 from before, it helped my "deficiency". All was well for a while until I started getting other symptoms: headaches, eye blurring again(but differently this time), shortness of breath, dizziness, dry mouth, mild heat flashes, abdominal pain, IBS like disorder...all these in more or less the same order. I took myself back to America thinking it would heal(wrong decision), and I only continued getting gut pain/pooping, dizziness and eye blur too. I got checked at a free clinic for h pylori, celiac(IgA), and HIV which all came back negative.

During this time I had a panic attack in my Uber and decided to book a flight back to get it looked at AGAIN.
Went back some other symptoms started popping up, eyes burning(and even watery at times), random joint/muscle pains that would "hop" around on my fingers, middle of the limbs even, and eventually dry eyes, dry mouth and breath thing came back too. My symptoms tend follow this pattern: if I'm feeling one or two, I won't feel others; they pop up in episodes lasting a few hours or less, and subside, then another one will replace it. I went to a gastro to check my stool and found bleeding, got scoped and turns out there was a stomach ulcer and a tiny hemorrhoid. Shes doing biopsies to rule out stuff like Crohns. BUT my rheumy got some test results back as well. Some notable ones are SED(negative @ 6), ANA(NEGATIVE), SSRo/SSLa(NEGATIVE @0.5), and Anti-CCP(also NEGAVTIVE at 0.9), BUT...I did get a RF Factor positive at 46 or so. Alarmed, I asked if it was Sjogrens. He said most likely not seeing as how acute with how all these signature symptoms popped up within the span of a month. My Hep B/C was negative so I don't know what else it could aside from MAYBE a case of acute sarcoidosis or Lyme. Will be getting biopsy soon

Its been a stressful 2 months and its tough thinking about my condition. I never thought I'd be affected by autoimmune disease this young@ my ethnicity and age and one that affects 40+ women 9/10, considering no one in my big family has had one except my mother w/ hyperactive thyroid. My depression stems from thinking of all the times I was healthy and regret regarding all the unnecessary stressed I caused myself in the Spring, and especially the future. It bummed me out to hear this was progressive, and I can't even begin to think how bad it'll get my symptoms being acute like they are now. My girlfriend and I are living in the most expensive city and I don't even have the career I want or even the means to support a FAMILY yet.

That being said...what do suggest my next steps should be? What are some supplements, medications I should seek out? I'm currently using Biotene to keep the mouth salivating and taking peppermint oil/HCL for digestion as well as a multivitamin. I hear omega 3 and Vit D(which my blood shows im deficient in), are helpful as well.

Oh, and to all those living in California, what are some health plans I should considering its open enrollment? I know I want PPO as I want to see a specialist who knows this well in my city. I hear great things about Nancy Carteron on here and I'm fortunate enough to be just miles away from her. I think reimbursement is 70% if out of network if i'm not mistaken. And should I get Humana for Dental? There's plan for $15 and one for $50 and the dentist my family goes to is under the coverage.

Cheers!

[Joe S.]

Welcome to the forum. Currently, Sjogrens is a diagnosis of elimination. The average time to diagnosis is 7 years. Your dentist and eye doctor may think you have Sjogrens but your rheumatologist is the one that will make the decision. One of my first clues came when a neurologist said that I was sent to him for the pain related to possible Sjogrens. About 4 years later I got the DX.

Before you take a medication or supplement, always check for side effects, interactions, and counter indications. Check everything you are currently talking, also.

Good luck in your search for a diagnosis.

[cccourt1942]

Paul, You don't know this, but I have said numerous times how smart you kids are.  I would google severe dry mouth and answer would be diabetes or Sjogren's disease.  Regular check ups had never indicated diabetes, and of course, I KNEW I didn't have a funny sounding disease.  You all pursue.

Since I didn't, I went to the various specialists for EACH symptom.  None of them got it.  But I never told any one of them about anything they didn't address.  So, ophthal took care of the eyes, ENT took care of salivary gland prob (sialadenitis), pulmonologist for breathing (had nothing to do with breathing), gastro for stomach (diagnosed GERD ..and treated for it--upon my insistence it felt NOTHING like GERD), didn't even see anyone about joint aches, etc...bought a Pilates reformer and added that to treadmill daily.  btw: it took decades for all my symptoms to advance enough that when I finally visited a rheumatologist, even he didn't think I had SjS.  Why?  because of my age.  I was "too" old.  Well, he was wrong. 

Now I am treated medicinally..but still have to see all those various specialists for the various organs SjS affects.  And that's my advice.  Instead of going to the titular head of the SjS pyramid, start with the lower blocks.  Address the eyes:  Ophthal.  Address the oral concerns: ENT, etc, etc.  See if one of those finds enough to support your other concerns.

As to the insurance, it sounds as if you can afford the insurance, so yes, get yourself covered..including dental.  I'm not in California, so won't offer any choices there. 

If you don't have SjS, once you are aligned with your various specialists, they will take an interest in your symptoms.   They may be able to help you on a diagnosis.  Since you've had so much done in Taiwan, make sure you keep up with all that has been done (medical records) as well as which supplements.  Western doctors in California, especially, are aligned with Eastern doctors and will understand said treatments. 

One more bit of advice I see on this site frequently:  ask for meds to make you more comfortable with or without a dx. For instance, dry mouth is xerostomia--can be treated w'out a disease attached to it.  Dry eyes?  If your cornea is affected (blisters, various abnormalities) a dry eye med can be Rxed.  These won't cure your conditions.  Well...I take that back: the prescription meds for your eyes can deter damage to your eyes.  For instance, by the time I was dxed, my lacrimal glands had atrophied.  My eye coverings have been improved greatly. btw: all these eye problems with sjs have never affected my visual acuity.  That's just me though. 

This is an observation---and I know ONE male who has Sjogren's.  But on this board, the men freak out more over this dx than the women.  The long term and no cure aspect of SjS (really, all autoimmune) upset men more.  Just an observation.  You will brush "shoulders" with lots of people on this site.  You will see we all keep living, we all keep moving, most keep working, and most are glad to have found this site.  It's the only place to go and hear all sorts of hints and to feel normal with this condition. 
Wc...and good luck
Sjoldier c3

[irish]

Good response ccc. You hit on all so many things so well. Irish

[paulc182]

Thanks for the words of encouragement.
Alot of us do the opposite. Google the crap out of our symptoms, go into paranoia mode, and then bring all this up with the doctors, which almost always results in them looking at us crazy/saying we're too stressed out. But I suppose after all that research, I'm closer to knowing what this may be and coming to terms/coping with the realization it could be something life long and incurable.
One worry is that I'll be in debt trying to cover my bills for all the visits to these 5-6 different specialists on top of potential dental bills. San Francisco being an expensive city to live in is an understatement. And its even worse when you and your partner don't have ideal jobs to pay off whatever future housing you'll have.

[irish]

I would suggest that you start out slowly to these docs. The ophthalmologist is invaluable as having dry eyes diagnosed right off the bat sort of sets the tone and docs sort of take it from there---or at least they should.
The next doc would be the ENT to check out salivary glands and dryness in mouth, etc. Also, make sure that you get your specialists to send your medical records to you. Make copies and if you want your GP to see the notes then send them or drop them off.

I learned early on to not ask the specialist to send medical records to my GP as sometimes the stuff they put in the records is not going to help me one bit. Sometimes they come out and say things that would make the GP think we are a hypochondriac. You just have to watch what records are set to your GP cause you want him on your side. If he turns against you then things can get dicey. I had one clinic that bad mouthed me so bad that the internist I was seeing told me I would be hard pressed to get a doctor in the state of MN to ever treat me again. He suggested I go to Iowa to the doctor.

Boy, I cried all the way home and my hubby told me that the way things were going I might end up dying cause I wasn't going to get treated. Actually, I was lucky I didn't die of infections cause was having such bad ones and it turned out I also had severely low t-cells and that was dangerous. You just have to keep abreast of the medical stuff and be careful what you tell a doctor so something doesn't get misunderstood and put in your records. When I would read my records early I did not recognize the person they were talking about as being me. Hard to understand but charting is difficult in this day and age due to computers, privacy laws and all the rules and regs that are out there.

Do not panic but think ahead. My home looked like a medical office for many years and both me and my hubby had chronic autoimmune disease and lots of doctoring, etc. Good luck. Irish

[paulc182]

Man, sorry for the rough experience with GP, sounded like a dbag.
I'll be sure to do all the above. Should the ophthalmologist be covered under the health coverage I get? Or do I have to buy a vision plan in addition to that?

Side note: How do ya'll send private messages? I keep getting this error saying "you are not allowed access to this section."

[Pete0211]

Base insurance covers eye disease and other ailments of the eye, and typically covers eye exams. "Vision coverage" is for corrective eyewear.

[warmwaters]

Man, sorry for the rough experience with GP, sounded like a dbag.
I'll be sure to do all the above. Should the ophthalmologist be covered under the health coverage I get? Or do I have to buy a vision plan in addition to that?

Side note: How do ya'll send private messages? I keep getting this error saying "you are not allowed access to this section."

I sent you a PM. Click on My Messages button near the top, and see if you can see it.

To send a PM, I usually click on the person's name,  and then click Send PM.  If for some reason it doesn't work, you can post a topic to the forum  and ask what to do. The admins are helpful.

[Linda196]

Regarding Personal Messages (PM); the function becomes available when you become a regular member, which I believe is after 50 posts, but I will check on that.

[paulc182]

Regarding Personal Messages (PM); the function becomes available when you become a regular member, which I believe is after 50 posts, but I will check on that.

No wonder. Thanks!

Man, sorry for the rough experience with GP, sounded like a dbag.
I'll be sure to do all the above. Should the ophthalmologist be covered under the health coverage I get? Or do I have to buy a vision plan in addition to that?

Side note: How do ya'll send private messages? I keep getting this error saying "you are not allowed access to this section."

I sent you a PM. Click on My Messages button near the top, and see if you can see it.

To send a PM, I usually click on the person's name,  and then click Send PM.  If for some reason it doesn't work, you can post a topic to the forum  and ask what to do. The admins are helpful.

Hi warmwaters,

Yeah I wanted to reply to your PM but couldn't, so I guess I'll just post here. It's a relief to hear how thorough Dr.Carteron is. I'll be sure to book an appointment ahead of time. The timezone here is 16 hours apart so it's a bit of a challenge getting a hold of her unless I stay up late. After consultation does she prescribe medication, or do I go to my primary care for that?  Thank you for the info.

[paulc182]

I think I'm going to take a break from this website ya'll. I'm not experiencing any major pains as of now but my anxiety/depression is ramping up a bit from from reading a lot of old posts here, especially ones from younger males
You can bet I'll be back if things take a turn for the worse, but I have most of the information I need to help myself when they do. Again, appreciate the help.



Peace
Paul