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I’ve shared in the past different symptoms of something autoimmune/maybe RA. My doctor does not refer me to a rheumatologist. My insurance insists on the referral. I’ve had elevated ANA positive speckled. I am achy and every joint throbs off and on. Now I have pins and needles and weakness in all four limbs. I woke up last night with numbness even on my cheeks. My doctor just wants x-rays and says I have degenerative disc and degenerative joint diseases. I don’t doubt that but I’m 47 and feel like I should not hurt this much. I’m an exerciser and healthy eater. What the hell do I do and what the hell is this? I’m contemplating an ER visit to try to go around my doctor. I love my doctor otherwise and I live in a fairly rural area, so I’m driving 40 min to switch. I will if I need to but I need help.

I had the same blood patterns in my early autoimmune testing. Recently diagnosed finally with Sjogrens. I was 39 when I had the testing I am almost 50 now.

Insist on a rheumatologist referral. If not, switch primary care doctors.

Call the clinic administrator and say that you need a referral or you'll be looking for a new doctor and submitting a sub par rating for the doctor's care in their "hey, rate me" survey.

Positive ANA, Speckled is indicative of autoimmune process.
Maybe you can discuss w/ your PCP that give you a round of steroids to see if it helps, if it does he gives you a referral for a Rheum.
The other option is reach out to your insurer, and ask them if there is a way to go around PCP. But if your PCP isn't willing to refer something that is outside their realm of practice then they are not a good dr. They may be nice, but that is not cool.

Thank you. I am double checking again because I’m super symptomatic lately. Steroids give me a heart palpitations, so I’m not really willing to go there. I’m hopeful another path works. I’ll try insurance if my doctor still says no.

[This message edited by deena04 at 4:51 PM, Tuesday, April 4th]

I went in today. Numbness got really bad. He ordered all kinds of tests, blood was taken and said a rheum referral will follow as long as blood still suggests it should.

Find a new doctor. He does not have your best interest.

Nope nope nope.
NOT OK, unless he did a fellowship in rheumatology he has no business denying you to be seen. Seriously. There is a large segment of the population that are seronegative but still have an autoimmune arthritis.
The first Rheum I saw in my 30's told me I just needed to lose weight, and my PCP from that moment forward treated me like a drug seeker.
I switched PCP's with the next job change, and found a good Rheum eventually in another 10 years. Guess who was diagnosed as seronegative, and started on meds at the first visit w/ this new Rheum? Yup and guess who also has SIGNIFICANT permanent damage because I wasn't taken seriously, or treated like a drug seeker, or considered a crazy person.
NOPE now I'm 52, with joints so damaged I can't tolerate exercise. I am on 3 meds to quiet my immune system.
ADVOCATE FOR YOURSELF. Regardless of what labs show.

Tushnurse and everyone - thank you. You’ve made me feel not crazy. My doctor is the opposite. I am looking at switching. My ANA test was elevated 3 times in a row. Those results this time are not in yet (lab out of office). While we wait, he said the other tests appear normal so he said no referral needed without anything abnormal on my cbc. I’m doctor shopping now. I hate that but am doing so. Ugh.

My positive speckled ANA before was 1:780. It climbed each time. I freaking hurt. His answer was to give me meloxicam.

Is your sed rate, or CRP (c reactive protein) elevated at all?
Your ANA is enough to send you to a specialist though.

Those were barely elevated at the top of the threshold.

The meloxicam can help with some of the inflammation.
I take it daily a d have for years. When I had to stop it for 6 weeks it made a difference.
But the elevated ANA and CRP/sed rate indicate that you do need to at minimum have joint imaging and antibody studies. I would also advocate for a Lyme titer.

Thank you. They did run Lyme but the result has not shown up yet in my chart. I made some calls and it sounds like someone from Mayo is going to be in touch with me. It’s a couple hour drive for me to go there but I’m willing to do that at this point. They said they can get around the referral.

deena, Mayo is a great choice. Instead of doctor shopping, why not just go straight there and send your PCP the results. I did something like that back in 2019 and saved a major surgery. Hard to compete with Mayo or Cleveland Clinics!

That’s the new game plan - Mayo. I shouldn’t have to go there frequently and it’s about a couple hour drive. Then I’ll find a local new doctor for general purposes unless this one gets on board fast. I felt better after talking to them and after reading all of your comments because I’ve been made to feel like I’m just a crazy person sometimes with this stuff. I HATE meds. I have all of the weird reactions that they list in the fine print It seems so I’m not just drug searching. I just want to feel better and normal.

[This message edited by deena04 at 8:31 PM, Friday, April 7th]

Mayo is a great option.
I also hear ya about the meds but sister when they find something that helps it is life changing.
First line of meds are DMARDs I suggest you see a real eye dr before heading to Mayo as it is recommended for Hydroxychloriquine and that often is first choice with Seronegative disease. It worked for me for 3 years.
The second line meds are biologics like Humira
Third line which have worked better than anything for me are JAK2 inhibitors like orencia and Xeljanz.
Since you have had issues with steroids in the past they may try a low dose so it doesn't cause issues with palpitations. Prednisone or solumedrol can provide almost overnight relief.

Have you been blood tested for PMR, polymyalgia rheumatica. . It’s an autoimmune connective tissue disease and it’s pretty much a sudden onset. I had such severe pain in every joint making it extremely painful to even stand up from a seated position. My general doctor initially referred me to a physical therapist thinking it was pain from the outside in as I just moved into my new house and was unpacking, lifting, and moving around more than normal. Instead of helping, the physical therapy massages made my body hurt even more. I just KNEW there was something wrong internally so I asked for a blood test, found out I had severe inflammation levels, went to a rheumatologist and he diagnosed me as soon as saw me sitting in the chair talking about my symptoms and the way I was holding my body. He started me on 20 mg of prednisone and told me it would work within 48 hours. And it did. I’ve now been weaned down to 5 mg after 6 months, am totally pain-free, and am on my way to being weaned down to 2 mg. and perhaps off of it completely. Your symptoms sound very similar to mine, so please ask your docs about the possibility of PMR. Good luck hon.

[This message edited by YankeeGal at 9:29 PM, Saturday, April 8th]

You all have great ideas. Thank you. I do not believe I have had a PMR test. I will double check everything that rolled in. My Lyme did come back negative so that was the latest one. I do not believe I have had a PMR test. I will double check everything that rolled in. My Lyme did come back negative. Basically, it was mainly my ANA that was pretty elevated.

Deena, the blood test I had checked my "C-reactive protein". The result showed elevated inflammation levels which indicated PMR. I hope you can get your blood checked again. Insist on it!

Ok. C-reactive was normal on mine. It was only ANA elevated and quite a bit to boot. It’s typically the only one elevated for me. That is what is so odd. However, I hurt and I heard bad.