New User with no diagnosis. Looking for advice.

[AmanDuh]

Hey from Florida. I don’t have a diagnosis again and my last appointment made me feel farther away from one than before. I feel like I’m going crazy and I have NO clue where to turn at this point. I have seen many doctors over the last 3.5 years with no confirmed diagnosis. They say that it’s not normal but no clue what it could be. I am getting depressed because I feel like I’m getting the flu most days and my brain function is nowhere close to what it should be with no relief or help. I’m pretty sure my husband thinks I’m faking things. I’ll try to make this as short as possible but can someone tell me if you have experienced anything similar?


I was a busy type of person, always doing some type of project or craft on top of a full time job. My symptoms hit out of nowhere. Started simple but then I would develop a new one every month it seemed. My symptoms include running low grade fevers everyday, constant runny nose, bone and muscle aches off and on, pain on left side towards my back, dry eyes so bad I can’t open them some mornings because they are stuck. Bruises everywhere for no reason, weight loss, absolutely no appetite, rashes and weird discoloring on my legs, enlarged liver, partially collapsed lung, blood in my urine, bladder pain, horrible stomach discomfort and heartburn. The worst has been the fatigue and brain fog. Over the last 3.5 years, I’ve had biopsies of my stomach and was told it was very inflamed but they couldn’t find a cause. Gave me a prescription for Prilosec. I’ve had many many blood test. They are all over the place. They have ranged from normal results to not. I have found that the results never match how I feel at the time I’m giving blood. I have tested positive for Proteinase-3 Antibody each time I’ve been tested so my Rheumatologist thought I had GPA but due to the ENT not seeing polyps in my sinuses, she couldn’t diagnose me with it. She’s labeled my autoimmune as connective tissue The consistent, not normal results are always low white blood count, positive PR-3, urine test show low protein & creatinine but not really low. I did test positive for ANA about 6 months ago and the notes said Nuclear, Dense Fine Speckled (don’t know what it means). However my last test in December was negative so my rheumatologist told me this week she wants to see if my symptoms are neurological and she couldn’t begin me on a treatment. I cried like a child. To me, this just tells me she doesn’t know what’s wrong and I’m probably imagining my symptoms. Then today I wake up and felt like I had been drugged or took a sleeping pill that hadn’t worn off. I’m so frustrated.

[me2]

So sorry you are having so much trouble. Not having a diagnosis magnifies it by 10X. Since your Rheumatologist suspected GPA was a nasal biopsy done? This is one of the gold standards for GPA diagnosis.

[AmanDuh]

No biopsy. He only scoped me and said I had a lot of inflammation but no polyps so he prescribed me antibiotics and nasal spray. Runny nose returned a few months later. They ask me if I’d had recent surgery due to the partial lung collapse but I had not. Once the next x-ray come back clear, they dismissed it as a fluke. I was referred to USF in hopes to be helped but they didn’t think my blood test results were bad enough to take me on as a patient.

[Dirty Don]

I agree with me2. I had a lung section taken and it was terribly accurate! At a time when docs treating me had absolutely no idea what was going on, I was scared and even became resigned, all very quickly. Fortunately, with a great support system, and one smart doc who said send the sample to Mayo...voila, dx was back in 24 hrs, from there I've been thru all the regimens, and finally feel pretty damn good. Hang in there, get a better consult if current docs are stumbling, and know that the depression is part of whatever it is that you may have...it will be fixed also. If you can travel, there are many on here from the east coast who have gone to some of the best docs in the world, they will 'chime' in...Hey, we need a chime on here...but I digress...best to you & keep getting after it! You will win...

[AmanDuh]

I am willing to travel if I have to. Sounds like I need a different doctor. Thank you!

[gilders]

Nasal biopsy is a good idea, but there's been quite a few people who have had false negatives. If your kidneys, or lungs are effected, then the biopsies from these tend to be more reliable.
I would always say that nasal biopsies are best done first, as they are less invasive and the nose is often a target of Wegener's, but don't completely rule out Wegener's if a negative result comes back, especially if other areas of your body have symptoms.

[Peter Marsham]

Sorry to hear you’re being put through the wringer, mate. I have to agree with gilders, nasal biopsy is a good indicator but certainly not definitive. I had very little upper respiratory involvement, but did have to get kidney and lung biopsies. Did your GP specify an ANCA count on your blood tests? That’s usually the first primary indicator of GPA, but it has to be specified to be tested for. Also, it will hit the kidneys and lungs primarily, so a biopsy from one or the other will show granulomas pretty much in the spot (I’d go the kidney biopsy personally, it’s far less intrusive and only requires a local)

That said, my medical knowledge has been gleaned from drunken reruns of Doc Martin, although it’s amazing what you can learn when you have to.

No insult, but I actually hope we don’t see you back here, because you don’t have Wegs. Though if it is Wegs, you could end up in worse places.

[drz]

Have you asked about a referral to Mayo since they often like challenging cases? You could also self referral but a good doctor will generally support and facilitate a referral for a second opinion.

[AmanDuh]

The Proteinase-3 levels have ranged from 4.5H to 2.1H. And I totally get what you mean by hoping not to see me back. ☺️

[AmanDuh]

My insurance starts in Jan and I’ve made an appointment with my new primary already. My plan is to ask for that referral to Mayo. That’s my goal at this point because I’ve heard so many people getting results from them.

[me2]

My insurance starts in Jan and I’ve made an appointment with my new primary already. My plan is to ask for that referral to Mayo. That’s my goal at this point because I’ve heard so many people getting results from them.

That's great news. I wonder if you could speed things up by asking for that referral NOW from your old doc and the new doc if the old doc says no? Can't hurt to ask. I've had good luck working with the nurse of some docs rather than the doc directly. Be a pest. Be persistent without being pushy. This is extremely important to you. Sometimes they are too busy seeing too many people and need some nudging.

[Dirty Don]

I would add to me2: start calling Mayo now for an appt., should be with rheumatology, as it may take some time to get in. My 1st appt with them took 2 weeks of phone calls every day to get an appt as quickly as possible. They are booked, but vacancies appear pretty regularly, so you can get lucky! Best to you.

[Susan B]

I’m sorry to hear you’ve been struggling with these serious symptoms for so long—too long. Others have already mentioned getting a second opinion and being persistent so I don’t have any new advice. I certainly hope you can find answers and a suitable course of treatment

Here are the U S News and World Reports rankings for rheumatology. Some are much closer to Florida than Mayo if that helps.

https://health.usnews.com/best-hospitals/rankings/rheumatology

[Island girl]

Hi, I am sorry to hear how badly you are feeling. Your Dr ruled out Wegeners which is GPA, but did
they sat anything about MPA? That is very similar to GPA, Treated the same way. The positive anca
is why I am asking. Good luck 🍀 in getting a diagnosis. Wishing you a Healthy New Year.

Island girl