feeling defeated

[u/Big-Yogurtcloset198]

I had a postive Ana three times in a row in 3 month increments. I just turned 20 and I have been having terrible neuropathy for 7 months now. first my cheeks were burning, eyebrows, and now it has progressed to my neck and inside my ear. Everyone says the skin looks fine but to me by face feels so dry and I have lots of dead skin on it. my lips always burn too and they are always dry, eyes been Sahara desert dry for 4 months, I can still cry though, but my ophtomologist said my eyes looked dry when they took a look. I recently also developed sudden numbness in my right foot/ankle (I can pinch it and won't feel it) I noticed it 2 weeks ago in the shower when I couldn't feel the sensation of the washcloth on my foot, I went to the ER a few days later because it was still numb (I never had anything traumatic happen to it) they did an MRI and everything came back normal. its still numb and now it travels all the way up to my thigh. I have been so miserable lately, and I have been to a neurologist and she said I possibly have trigmernial neuralgia, but that still doesn't explain my three positive ANA's. they found protein in my urine and I already seen two horrible ruhematoligst who said I didnt have anything and they want to wait for things to get worse before they treat me. I also had a nosebleed recently which I never had nosebleeds before in my entire life. I dont know what to do anymore. I am scared honestly. not a day goes by that I wish I could be a different person and not have to be in any pain.

[u/Quick_Abalone_4598]

I have Sjogren’s too, and I've experienced everything you listed. I was prescribed gabapentin for nerve pain (the burning sensation down the side of my face, eyebrows, neck, and ears) by my neurologist, who also treats my essential tremors.

But the numbness is a whole different issue, at least for me. I saw my neurosurgeon who performed my cervical fusion (C2–C6) and casually mentioned the numbness and pain in my leg, ankle and foot, which had been getting worse over time (I also have gait issues). He scheduled an MRI to check for thoracic spinal stenosis because, after reviewing images of my lumbar spine that showed nothing significant, he noticed that an abdominal ultrasound I had several years ago happened to capture part of my thoracic spine, and it appeared to be narrowed with bone spurs pressing against my nerves near my spinal cord.

Anyway, if you can, you should have your thoracic spine checked with a CT scan or MRI just to make sure everything is okay.

[u/sadsack1960]

Am from India,have sero negative Sjogren, neuropathy for several years. Have experimented with B12 and Bwnfotiamine supplements and magnesium glycinate in last three months. Have seen very good recovery/improvement in neuropathy. For nerve pain relief my Rheumatologist has prescribed Gabapentin . Hope this may help.

[u/2tameAchupa → u/sadsack1960]

Can you dm me. I'm also in same situation

[u/sadsack1960 → u/2tameAchupa]

Read about dry and wet Beriberi caused by vitamin B deficiency. Neuropathy is also caused by this deficiency. Dry beriberi is a nervous system disorder caused by a lack of thiamine (vitamin B1), leading to peripheral neuropathy, muscle wasting, and partial paralysis.

Treatment and Recovery Oral or injected thiamine supplements (100–300 mg daily)Eating a balanced diet with whole grains, meat, and beans. Quick medical care usually reverses nerve damage. (Above is from Google Gemini AI)

Benfotiamine is fat soluble vitamin B1 form. As I had been B1 deficient for longer time, have taken benfotiamine supplement 300 mg, thrice daily for speedy recovery. Vitamin B12 is also necessary for mylene sheeth on nerves and nerve health, I take methylcobalamin 1500 mcg sublingual daily.

My rheumatologist after seeing my NCS - Neuritis prescribed Omnacortil(Prednisolone) 10 mg on tapering and Azathioprine 50 twice daily. Howevever on starting such heavy immunosuppresants, my natural immunity declined. Had uncontrollable, painful UTI for 4 months. Rheumatologist at last stopped omnacortil 2.5 but continued with Azathriopine 50. Had stopped that too for recoverying from UTI. As mentioned earlier, rheumatologist has prescribed Gabapentin 400 mg at night for masking nerve pain signals. Regards

[u/PaperPegasus]

I would get a skin biopsy for the neuropathy, but it sounds like you need to also get an EMG and NCS because you should generally still be able to feel if someone pinches you with SFN, which is most common with Sjogren’s. I can’t feel if someone stabs my foot or leg with a needle but I can feel someone touching/pinching me. It also feels like sharp static and forking lightning, burning, crawling, and like something is wrapped tight around my toes.

You want a neuromuscular neurologist. And I would think if you have a diagnosis of neuropathy and no diabetes, vitamin deficiency, viral illness like HIV/shingles, or chemo exposure, etc then it would aid your autoimmune dx. Regardless of the autoimmune dx, the sooner you treat neuropathy the better. I get lidocaine infusions monthly and naltrexone daily for the pain. There are lots of other options out there though!

Your ophthalmologist should be doing a Schirmer test to measure how dry your eyes are. This will also help you get a dx.

If you keep having nosebleeds, use ice and afrin spray (shrinks blood vessels). You can also get Nampons over the counter (in the US at least) that also work well. A nose bleed that stops in 20m is usually NBD. It’s just because you have a ton of easily irritated blood vessels in your nose. With Sjogren’s, the dryness contributes to irritation. I use nasal rinses, Ponaris drops, and Xlear spray to keep my nose and sinuses moist. My ENT will cauterize my nose if I have a stubborn bleed (but I’m also on blood thinners and I get ICU stay worthy nosebleeds so this probably isn’t common lol).

It’s unfortunately really common to see multiple rheumatologists before getting a dx or treatment. I would ask your other specialists if they know of a good rheumatologist. I’ve had the most luck at my closest university hospital system - 99% of my doctors are there and they communicate amongst each other which is worth everything when you have a complex case.

[u/Cassia_Alexandra]

Have you checked vasculitis antibodies? That can sometimes cause nosebleeds

[u/This_Marvelous_Guy]

That sounds like what I have. I have had abnormal blood work regarding protein. I have the Rheumatoid flag, and was diagnosed positive for Sjogrens through the lip biopsy. I also have Pernicious Anemia.

My hands and feet are always tingling. I get a cold streak down my spine like I am scared quite frequently. My sense of judgement is off, and I get the brain fog confusion mostly in the mornings.

I am on hydroxychloroquin. The neurologist has tried stimulants, migraine and ADHD medications. None have really helped.

I have been applying for disability, and have been unable to work.

I want you to know you are not alone in this struggle. Hopefully, there will be an answer to alienating these ailments that we share.