struggling to diagnose SOD

[adhdpeachykeen]

hi all, I am 24 female and I have been struggling to find answers. My primary won’t write me a referral to a rheumatologist due to labs being normal.

ANA, ESR, and WBC were all neg

Despite having a PPO insurance multiple offices I’ve inquired about require a referral before hand anyways. I am trying not to self diagnose. Nor am I trying to invalidate anyone else’s diagnosis. I just am looking to gain some insight/advice.

Symptoms include:

•Fatigue

•CAEBV Diagnosis confirmed

•Hot flashes

•Muscle soreness/muscle cramps (feels like intense growing pains)

•Skin rashes (itchy)

•Hair loss

•Intermittent low grade fevers 99.8-100

•IBS Diagnosis confirmed (Digestion issues)

•Anxiety/Palpitations

•Interstitial Cystitis Diagnosis diagnosis confirmed

•Poor blood circulation in extremities shown by previous LE Doppler Ultrasound

•Suspected Endometriosis/PCOS by PCP

*Mother has Ulcerative Colitis

Maternal grandmother has Lupus

Maternal grandfather has Crohns (no longer alive)

All information is appreciated

[OldTed60]

I can understand the need to look for an underlying cause connecting all these problems. From your symptoms and diagnoses list I would maybe look more into Sjogren’s, Myositis and even Systemic Sclerosis rather than just focusing on Lupus or IBD. Autoimmune diseases can have a hereditary component sometimes but not specifically. If your bloods are normal this hopefully buys you some time as you’re likely seronegative for now if you have an autoimmune disease, and the prognosis is usually better for seronegative.

Endometrosis is a horrid condition of itself - sorry you have so much on your plate. Best of luck in your search. Rheumatologists usually require evidence of inflammatory arthritis to accept referrals - at least here in UK.

[adhdpeachykeen in reply to OldTed60]

Still a helpful bit of information, thank you!

[dg70]

If you are in the UK keep pushing for a rheumy. You can pay privately yourself. Cost me £200. Best money I ever spent. I am negative bloods same as you. Except double stranded dna which only a rheumy can order. A gp can't as far as I understand. My dsdna positive got me my lupus diagnosis. Recently I have just started being positive rheumatoid factor bloods. I"m 54 and its taken 10 years of being passed around various specialities since my symptoms worsened to final diagnosis. Now I have sjogrens disease, joint hypermobility, no proprioception, rheumatoid arthritis. It can be a big box of trouble you may open! Still without knowing you cant access medication, help and support. Keep a diary and pictures of symptoms and pay privately if you really feel you have an autoimmune condition or change your gp practice. You need to explore this to at least seeing a rheumatologist. Don't give up yet.

[adhdpeachykeen in reply to dg70]

Thank you for the information and your kind words!

[DogHospiceMom]

I absolutely understand your frustration as it took forever to diagnose me with my first autoimmune disease. My suggestion would be to get tested for all tick born illnesses. In addition, see if you can get a homocysteine level test. MTHFR is also a problem but hard to find a doctor who knows about it. However, if you do have high homocysteine in your bloodstream it would possibly mean you have MTHFR and are not metabolizing B vitamins which cause a wide variety of symptoms. Best wishes.

[KayHimm]

One thought is your GP may want to watch for more indications before sending you to a specialist. I would keep a log of your temperature. It is not specific but indicates something is off. That was one of my symptoms too.

Years ago my GP continued to run tests when I was similar to you. Even when I was sent to a rheumatologist and had more extensive testing, I was still « watched » until more symptoms made things clear enough to diagnose.

I hope that is helpful. You aren’t being dismissed because you aren’t being referred. Your GP can watch for signs like rashes, anemia, swollen joints. You should get seen for any new issues.

A young woman with fatigue, low grade fever and aches needs to taken seriously.

Best of luck.

K

[adhdpeachykeen]

Thank you for the information and the support!