Hi everyone. I sit here wondering how to share my thoughts. I am so discouraged at this point and have no idea where to turn. I have been dealing with symptoms for years now. No matter how many doctors I see, none of them will truly entertain the idea of an autoimmune disease. Despite all my symptoms and ANA being high positive three times, they automatically slam the door on that possibility. No other autoimmune blood tests ever come back positive, and they say I don't show signs of inflammation. I don't understand that part because I often have elevated WBC, especially neutrophils, and fevers. Would that not suggest some inflammation? A neurologist yesterday did tell me I am probably dealing with some sort of dysautonomia but she doesn't know which kind and it's highly unlikely anyone will officially diagnose me with that because my symptoms are too all over the place. She diagnosed me with chronic migraines, but I feel that explains so little. She listened more than other doctors in the past, which I appreciated, but I still didn't feel very heard. I truly feel like I am starting to lose my mind. Despite all my symptoms blood work refuses to show anything, and my symptoms are so all over the place and complex that those don't seem to guide doctors either. I have felt this is autoimmune driven for awhile now, but outside of my primary care practitioner no other doctor will entertain that idea. And if it's more dysautonomia than autoimmune no one will officially diagnose that either. I know diagnosis isn't everything, and the last neurologist told me it really wasn't necessary for treatment, but I can't shake the feeling that someday it will be valuable information and play a role in my treatment. Has anyone experienced a fight like this? Positive ANA, symptoms, but other blood tests normal? My ANA also bounces between positive and negative. I am so tired and discouraged. I'm trying to find the correct treatment plan before returning to college soon, and I feel knowing which monster I am fighting could help with that. Is it a good time to give up on autoimmune and accept that an answer isn't possible for me and just try to treat symptoms the best I can? I don't want to admit to defeat but feel that I may not have any other choice. Thank you.
Extremely Discouraged : Hi everyone. I sit here... - LUPUS UK
Extremely Discouraged
Hi BrooklyneDeanne, sounds like you have had a horrible time. The road to diagnosis is extremely long—it took my eight years to get diagnosed with lupus, mostly because my initial symptoms were extremely rare, so they kept getting misdiagnosed. It’s an unfortunate reality for many autoimmune sufferers. You are definitely not alone in this journey, many others here on this forum have been through years of searching before hitting upon the right answer.
In one sense, your neurologist may be right: the treatment may be the same for your symptoms, regardless of the diagnosis. But I also understand your desire to find a name for all this madness. When I was given a diagnosis, I felt the label, as silly as it sounds, gave me credibility as a patient. It gave weight to my blood results. It gave doctors a heads-up every time new symptoms developed, especially when they were unusual. And it gave me a sense of direction with treatment. Knowing what to call this madness has helped to empower me.
All I can say is hang in there! I know it’s exhausting, searching for answers (not to mention good doctors), but it can be worth it. Feel free to ask questions about specific symptoms on this forum, there are no dumb questions here! 🌻🌈
Hi! Thank you for your reply. I’ve had symptoms for 10 years now, but my ANA was only tested for the first time in 2020, so I feel I still am still early into the process of actually getting a diagnosis. I really do feel there is an answer out there, and I have no way of knowing if a diagnosis will make a difference to treatment or not without one. Unfortunately, my blood work is refusing to show anything useful outside of a positive ANA, and evidently that along with symptoms aren’t enough to take us in any direction towards a possible diagnosis. Perhaps it is time admit defeat, but every time I try to convince myself to stop looking for answers it just feels wrong and like I’m giving up. This monster has taken so much from me and continues to do so, and the fact that the monster continues to go unnamed makes it feel even more nasty to me. I want a diagnosis for validation, for comfort knowing I have a name to what I am fighting against, and to open up possible doors to more treatment options.
I totally understand—the name does give us validation, as well as direction and options for treatment. Maybe don’t think of it as giving up, rather sticking it on a shelf for a while, because it can get exhausting. Maybe take a break and go back to it when you’re feeling stronger?
I have positive ANA and I’m also positive for APS (anticardiolipins) which helped me meet criteria for lupus. But it’s worth mentioning my bloods go between being positive and negative. It doesn’t mean I no longer have lupus, it means bloods are not the whole story and can change over time. So keep testing and searching. Hope you find a rheumy who is not guided by bloodwork alone!
Thank you! ❤️I think this is a wonderful idea
i have been going through a similar illness for four years. I finally found a Rheumatologist (after consulting four other highly recommended ones) who said “I am going to treat your inflammation with small doses of methotrexate (5mg/wk) and prednisone (1 mg/day) and see if it helps”. He didn’t speculate on what the disease may be. Like you my ANA is always very high, (2680), I am RA negative. 20% of people are RA seronegative but they do have RA. Anyway the meds have made a difference. I have been on them for three weeks. Small changes so far but I feel there is hope for feeling better.
My ANA is usually around 1280, but last time randomly came up negative despite still dealing with symptoms. I’m so glad the meds are helping you!
Hi BrooklyeDeanne I am so sorry that you are struggling. I think most people here will totally understand your feelings.It is so disheartening to feel so ill and not have a reason for it. Thirteen years after testing positive for Lupus I am still struggling for a definitive diagnosis. Each time I see another Rheumatologist or Neurologist my diagnosis alters.I often feel alone, disbelieved and that I simply do not matter. Most doctors seem to diagnose on blood tests alone. Is there a centre of excellence near you that you can be referred to? Are they treating you and if so is it helping? It is an insidious illness so take all support offered. Xx
Hi! I’m so sorry your diagnosis keeps altering, that must be so frustrating! Most doctors definitely seem to diagnose based on blood tests alone. My symptoms could also be so many different conditions too though, so they aren’t helping to narrow down much. I’m not sure about a center of excellence near me, I will have to look into that. Naltrexone seems to help a little bit.
I dread seeing new doctors now. One of the worst diagnoses was Fibromyalgia and “ hysteria”. I was so shocked I could not speak. Whatever the label we need and deserve care and sadly many of us do not get it xx
I dread it too. I am so scared of doctors and gaslighting now. Fibromyalgia is a diagnosis I deeply fear. Goodness, I’m so sorry that happened! I would be shocked beyond words too, that’s horrible!
It completely floored me and it has impacted how I have been treated since then. I am not nor have I ever been hysterical in relation to my ill health. I am however, anxious that I might be faced with a doctor as uncaring, rude and dismissive again. We definitely deserve better than this lazy, disinterested approach to healthcare. It damages much more than our physical health xx
I completely agree. ❤️ I also fear facing being dismissed and gaslighted. 
What medication are you on? Hydroxychloquine usually first port of call, takes a few weeks to work. I feel your frustration. Try to focus on medication to treat symptoms.
Do ypu get rashes? Take photos if so. Are you in the UK? Ask gp to refer you to a lupus specialists.
Xx
I’m currently on Naltrexone, Robaxin, and Ubrelvy. No rash. I don’t actually think this is Lupus, but I still feel I might be able to find guidance through this community.
Hey, I’m sorry you’re going through that. I had to go through that for about 9 months of having horrible problems like joint aches etc which were very sore but yet again at that point I had no inflammation and some blood test were negative I can’t remember what for and even the doctor told me it’s not lupus when I was so sure it was 😡 then because I had no meds or anything I got an extremely bad flare up in august that put me in a hospital but also after weeks of not getting much help from the doctors and I had loads of inflammation and ended up not being able to move at all. They then gave me steroid tablets and after doing tests that confirmed I had lupus started me on proper medication for it. So I do think diagnosis is very important in being able to keep this under control although it’s very hard to diagnose unfortunately. I wish I could help you more and I don’t have an answer for you but I hope this helps in some way I would just say keep nagging the doctors and do not give up ❤️
Hi! Your reply is helping a lot and offering good information and encouragement, so thank you! I won’t give up ❤️
What are your symptoms?
Abnormally slow heart rate with spikes of 30 to 70 BPM upon standing, but will drop back down too slow 20 seconds later, excessive sweating, fatigue, headaches, insomnia, nausea, muscle aches and pains, joint pain, hyper mobility in certain joints, food sensitivities, itching (no rash), dry eyes, dry mouth, difficultly thinking and with memory, numbness and tingling and pins and needles in all limbs and face, intermittent fevers, constantly feeling either extremely hot or extremely cold, frequent urination (possible back to back UTIs) and hand tremors. Less common symptoms include chest pressure, disturbances in vision such as double vision, and an odd sensation that makes it feel like I can’t swallow (only lasts a couple of seconds).
I can see why it is difficult to diagnose. Those could be anything. What helps your symptoms? Did your primary doctor give you a pack of steroids to try and see if that helps? That might show if your condition is inflamatory in nature. Did you try plaquenil for couple of months? It's a mild drug but could point to diagnosis if it helps you. Is there some treatment for dysautonomia that you could try. I dont know much about it but my thinking is if you try to treat it and it helps then you might narrow down the diagnosis.
I know, and that’s the problem. I’ve been symptomatic for many years now and my body refuses to produce symptoms that help narrow it down. It’s so discouraging and at this point I think it’s time just to give up on finding out what this horrible monster is. 😞 I haven’t tried any of those medications.
I dont think you should give up as there are so many things you could try. For example, as you mentioned, you didnt try even some basic meds, and there are so many of them.
I am going to show this medication list to my primary care doctor. Thank you! I agree, I shouldn’t give up yet. I still feel there is possibly an answer out there. It’s just hard not to get discouraged after all this time. =)
Of course it's hard. But you gotta try keeping your mind as straight as possible so you can make proper decisions and think of ways to help yourself. This is a good froup of people that understand what you are going through and can help w advise. Even if you do have dysautonomia, it could be cause by autoimmune disorder. You probably have both.
Thank you for the encouragement. You’re absolutely right, I will keep going =) Both sounds accurate.
I have the majority of these symptoms. Also shortness of breath going upstairs/ hurrying up/ bending over/ showering. Fatigue is horrendous after small luxury tasks such as having my brows waxed. 😒 I've been diagnosed with POTS and some form (not labelled) dysautonomia and LC. I'm currently on BP meds to increase.my Blood pressure and betablockers to reduce the fast heart rate. I'm in the UK 🇬🇧 it has taken 9 months of symptoms to get diagnosed. Prior to this I was hitting the gym 3 times a week, even after a 12 hour shift. I worked 50-60 hours a week as an ambulance technician. I did all the housework, and had energy for social dates.
Now....now I can barely sit at a desk for a shift due to fatigue, aches and terrible temperature dysregulation.
I'd be pushing for a cardiology review. Go armed with what you think it is. Or what you think it could be.
Good luck.
It took 14 years to diagnose me with Lupus with years of tests and multiple biopsies. I was eventually transferred over by my local hospital Dermatology Consultant to see a Professor of Lupus at a bigger hospital where all my historiology was carefully examined by a specialist team and I was finally diagnosed after they found markers from my tests which was a great relief after all these years. I didn't even know I had an option of seeing someone higher in the field. Push to see if you have any options of seeing a specialist team. I have started treatments and feel so relieved as I thought I was going mad.
Thank you! I feel like I’m going mad 😅 I will be looking into this option.
I think it is due to the criteria changing and some Rheumatology departments using 2019 EULAR ARC criteria intended for research. Before 4 of 11 got you past the post. Now only one symptom is scored. Kidney involvement can give the necessary 10. Otherwise the next highest eg arthritis only gives 6. In such cases the remaining 4 points need to come from specific blood result(s) being positive..
Not sure the criteria will last long but while they are they are there guess it provides handy excuse to send many of us out the door..
I got a second opinion in the end from a more experienced rheumatologist who preferred treat symptoms.
Don't give up...
This is good to know, thank you 😊
Hello....I'm so sorry, as it is so stressful to go from appointment to appointment, sensing in yourself that something is not quite right, only to be told that your symptoms do not fulfil a clear diagnosis. Many things on your list of symptoms rang a bell with me so you are not being unreasonable...in fact, if you can, you are being sensible to keep on trying. I agree with (above) asking your doctor to refer you to the autoimmune specialism of a rheumatology dept as they are more likely to think outside the box and not take so much notice of blood results (which can go back and forwards). Personally I have found neurologists not to be quite so up on the variations of autoimmune illnesses and symptoms.
I was in your situation when I was younger and, although it took a good while, I finally got a diagnosis (SLE). I was so disheartened after the first appointment with a new GP after many years who refused to refer me to rheumatology... ("We all get aches and pains at your age")... to the point where I felt I could not cope with pursuing it any longer. So I decided it was time to regroup..... I gave myself some months to recover mentally and feel a bit stronger, changed to another GP in the surgery, tried to not check or think about symptoms in the evening so that I could sleep a bit better and then started to look into details further to see if I could produce some 'specifics' that might take me further with a new consultant. One of these things was to look back over any illnesses of immediate relations as autoimmune issues often run in families...I found issues going back 2 generations that I was not aware were connected. This was a more objective starting point for a conversation, so I typed out a clear bullet point sheet of my symptoms in historical appearance, trying very hard to keep it factual and not include my emotional reaction to it all...that came later. I asked my GP to send my typed information along with a referral to rheumatology and there were enough bits of information in it for them to look into things and ask me further questions before starting on treatments.
Autoimmune diseases can mimic other illnesses and often there is a crossover of more than one. For that reason, I think it is good advice to try treatment of symptoms because sometimes that uncovers another piece of the jigsaw along the way, depending on how your body responds to certain drugs etc.. My symptoms changed over the years and I was seronegative when tested at the surgery....but I am an example of someone who was diagnosed late but finally got there. Please do hold on to the knowledge that many of us on here do understand what it is like to feel so poorly and not be able to explain it to yourself or to others.
It may be worth checking again if there are any regular triggers for your symptoms...it helps to feel more in control of them....e.g. weather (humid/cold), any infections such as dental, overheating for itching, muscle aches, muscle weakness, joint pains....helpful to distinguish. I would add that when I was younger I was known by my friends as the founder member of the TWBC (teeny weeny bladder club) as I needed to go so often ( not UTIs). Now I am older I know when my inflammation is going up or I have a temperature by the behaviour of my bladder. So some symptoms can give clues you would not expect. I also had symptoms that would be described as autonomic and am finding that some of them are improving with my treatment for SLE, so there is plenty of overlap.
I had an early diagnosis of ME stuck on my NHS record that was not correct and it seems it is coded so followed me round the system. I kept on asking for it to be taken off and it finally was when I was diagnosed...my consultant made a strong point to my surgery that it needed to come off my record as it had played a large part in my not being diagnosed years earlier. I thought it might be worth mentioning this.
If you are not sleeping, you may like to try ClassicFM weekday evenings7pm onwards and during the night....it has helped me so much to lie and relax and subsequently fall asleep...just a thought.
I do hope you can get some more support as the time goes on ...there is more and more being learnt about some of these diseases now and I am proof you can get answers in the end.
(Sorry I have gone on a bit but not so concise these days!)
Hi! Thank you for reply, I have been reading over it and taking some notes. I do have things that regularly trigger my symptoms. These include weather changes, stress, certain foods, menstrual cycle, over exertion, being too sedentary, and more. I am gathering from several of the replies here that I may very well be dealing with both autoimmune and dysautonomia, which makes a lot of sense. Unfortunately, it seems that my symptoms fit too many conditions so nothing can be diagnosed without blood test results coming up positive. That so far hasn't happened. My dysautonomia is odd too. I qualify in almost every way for POTS, but heart rate is odd. It spikes by about 30 to 70 bpm when I stand up, but drops back down super fast. I can go from around 110 to 50 bpm in less than 30 seconds. I hope I get more support too. I need more people on my team, and am growing increasingly nervous as the new semester for college gets nearer. So far I have been told I have been told I have chronic migraines and "general dysautonomia". I did have classic migraines as a teenager, and might be dealing with acephalgic ones now. It's hard to tell though and feels like it explains so little. I hope I can get answers in the end too. My ANA was tested for the first time in 2020, and I only started seeking answers the year before that, so I keep reminding myself it's too soon to give up.
Your High ANA, dry eyes and neurological symptoms and dysautonomia might possibly point to Sjogrens. Or Lupus/Sjogrens overlap, Sjogrens is very similar to Lupus. Peripheral neuropathy is a common symptom of Sjogrens, also autonomic neuropathy and dryness of eyes, mouth, vagina. Like lupus, its systemic so can affect any part of the body. And unfortunately also hard to get diagnosed. Plaquinil is the first line of treatment. I also have negative blood work now, had ANA and RF before I started on plaquinil.
Good Luck! Here is a link- sjogrensadvocate.com/
Hi! Sjogrens would make sense. I have been tested for it before. A positive marker came up one time, but then quickly disappeared, of course. I am going to ask my primary care doctor about planquinil. Thank you!
Hello, I was diagnosed with lupus in my twenties but over the years they changed it to sjorgrens then connective tissue disorder 😱Whenever I have a high inflammatory marker my Drs say it's down to something else.
I also have 2 friends diagnosed in their late 50's who never tested positive for any of the lupus specific tests but we're found to have lupus on biopsy , something my Dr says is impossible 🤔
Goodness, it seems the doctors can't make up their minds for you. I'm pretty sure lupus can be found on biopsy. 🤔 The last doctor I saw said I didn't show any inflammatory markers, this was while looking at a history of blood work provided by my primary care physician. I don't think she had all the results because I have a history of elevated WBC and neutrophils, as well as fevers. I thought those things indicated inflammation but maybe I am wrong.
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