Has anyone had their diagnosis taken away? - LUPUS UK

LUPUS UK
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Has anyone had their diagnosis taken away?

eescvc
eescvc

I have just made another post about my reduced mobility so apologies for that.

I was diagnosed with SLE in January 2018. In the time from diagnosis until now I have had the following antibodies: ANA, dsDNA, Mi2b, Ro52, Rheumatoid Factor and anti-cardiolipin.

For some reason UCTD was the diagnosis put on my consultants letters. In March when I saw my consultant she put in the letter to my GP "I have no doubt she has SLE and not sure why UCTD was on her letters."

Last week I was admitted to hospital for steroid infusions following severe muscle weakness. In this time I saw maybe 6 different consultants. Not once have I seen my own.

Today I saw they had written to my GP after my discharge. They said this:

"Please note ANA now negative. Considering possibility of Fibromyalgia diagnosis. Will explore when we see patient in September."

What is going on? I'm scared and confused. I have no doubt I have lupus. My consultant said the same thing only in March.

Please help!

40 Replies
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I can definitely see why you are confused. With your positive anti-DNA and anti-cardiolipin, the doctors were definitely seeing that as pointing more specifically to lupus or at least lupus-like CTD. It would be very odd for a rheumatologist to go from SLE to fibromyalgia because one ANA was negative.

Could it be they meant two different things? One is your ANA is negative now. Two is the muscle pain is fibromyalgia related to your lupus.

Do you mind telling us your symptoms that led up to the blood tests?

K

eescvc
eescvc in reply to KayHimm

My initial symptoms that led to my diagnosis? Mainly joint pain and inflammation. GP thought I had RA. Sun sensitivity, headaches, ulcers, hair loss etc were all discussed at the initial Rheumatologist appointment. GP had already done full bloodwork so I was told lupus in that first appointment.

I don't really know what they mean with the fibromyalgia and ANA comments. I'm tempted to call my consultants secretary to ask for clarification but I've never done anything like that and don't want to make a fuss.

I have also been referred to neurology for muscle biopsy and other tests for my muscle weakness. That's over the next few weeks.

KayHimm
KayHimm in reply to eescvc

If you are confused , definitely call for clarification. I would be stunned if the rheumatologist is changing your diagnosis for the reasons given. The UCTD vs lupus is not very important, particularly early on. Some doctors have a higher bar than others. But your doctor said “definite” lupus. And you have both clinical signs and lab results consistent with lupus.

You have been on steroids and MTX. If you were misdiagnosed, that would be a huge error. I really do not think that is what the doctor was saying.

Keep us posted.

K

Maya23
Maya23 in reply to eescvc

I was also referred to neurology to check if the Lupus was causing the burning/tingling/feeling of weakness in my arms and legs. A diagnosis of Vasculitis was looked at but no evidence in MRI - I ended up being diagnosed with Fibromyalgia.

Maya23
Maya23 in reply to eescvc

..it’s also possible to have Lupus and Fibromyalgia at the same time. Also see my other reply - my ANA went negative after a few years and lupus is now ‘dormant’ and I have diagnosis of Fibromyalgia.

I have been taken off steroids because they don’t want my illness to be masked until they know exactly what is going on.

It could be possible that your medications have masked your diagnosis . I’m sure they will not take your one negative as you have been cured .

Can I ask if you can explain to me what your muscle weakness feels like? I have very weak days but I’m more in pain then feeling a sense of weakness 😏x

eescvc
eescvc in reply to Lisalou19

It just makes me struggle to walk/stand or climb stairs. Lifting something even light feels impossible. My muscles basically feel heavy and tight yet weak like I have flu.

Lisalou19
Lisalou19 in reply to eescvc

I struggle with stairs it’s like lifting dead weights. Can not keep arms up for long periods of time and my lower back feels like it’s going to break. These symptoms come and go and when I’m asked about weakness it feels more like pain . I don’t know 🤷‍♀️ x

eescvc
eescvc in reply to Lisalou19

I haven't really been taken seriously regarding the weakness until my physio took strength tests and results were worrying. But honestly how I'm feeling now is the weakest I've ever felt and just playing the waiting game now.

Lisalou19
Lisalou19 in reply to eescvc

That is not good. Have you had your ck levels checked? X

eescvc
eescvc in reply to Lisalou19

They're normal.

I had a diagnosis based on blood work and kidney involvement years ago and had a long course of steroids and got better. All my bloods disappeared but I was still followed by rheumatology for years afterwards but was eventually dismissed and followed by just my GP, who tested urine protein yearly.

I was well for over 20 years until this fall when I had a massive stroke. In the hospital my Ana, ds DNA. Ro and la were positive but Antiphospholipids were all negative. Four weeks later a new neurologist thought the hospital forgot to issue a beta 2 glycoprotein 1 test, they did not forget it it was buried in 80 pages of tests, but he reran the test and this time four weeks after my stroke it was over 150 with a 20 cutoff so highly positive. 12 weeks later after exercising, vitamin d supplementation, CBT mindful training and a high fiber diet the beta 2 dropped to 35( moderate low) and last month my lupus panel again went negative.

I thought this would mean I would be dismissed from rheumatology and hematology but it didn't. I think the high stress of my stroke caused elevated antibodies and doctors agreed but said stress is impossible to always control and antibodies might come back and with a history of stroke I will need life long treatment with at least warfarin. They are holding off on HQC if my antibodies do not reappear.

There is a lot of over lap between fibromyalgia, lupus and connective tissue disease. All involve inflammation as a cause of symptoms. Chronic inflammation increase both white blood cells and antibodies. Fibromyalgia has recently been proven to involve excess glial activity and brain inflammation which could explain your weakness more than lupus might. massgeneral.org/News/pressr...

No matter what name your disease is given, treatment and getting better are the goal. Stop focusing on diagnosis and start focusing on improving your whole body. Ask about your CRP, sed rate and white blood cell counts. If they are elevated ask about using statins, diet, and exercise to lower inflammation. if cardiolipin is still elevated twice with 12 weeks inbetween tests ask about HCQ and aspirin treatment. Aspirin lowers systemic inflammation and HCQ can lower antiphospholip antibodies.

Ask about being treated psychologically too. The last few months including weakness and hospitalization is bound to cause great stress. PTSD is very commonly caused by serious illness and if left unaddressed worsens our diseases by increasing inflammation and neutrophils.

Please take care! Xo

KayHimm
KayHimm in reply to Roarah

I thought about you. You can lupus in remission but can’t really ever not have lupus if it was correctly diagnosed, right?

😘k

Roarah
Roarah in reply to KayHimm

To be honest my rheumie, neuro, hematologist and cardiologist all meet regularly about me. They are quite stumped about my antibody fluctuations. APS antibodies are very known for fluctuating so that diagnosis will remain and since I see a rheumatologist and hematologist for that I will remain covered with or with out a lupus diagnosis. The rheumatologist will see me every three months for now and will reassess how to proceed after a year. Xo

KayHimm
KayHimm in reply to Roarah

You are the kind of patient that will make doctors lose their hair! I feel for you but also know they are trying to do the right thing.

😘k

Roarah
Roarah in reply to KayHimm

I think all most all disease from cancer, autoimmune, cardiac, autism, depression and dementia is caused by excess inflammation so as long as the doctors continue to treat my inflammation with statins and blood thinners for now or HCQ and steroids if lupus antibodies raise again, while I treat my inflammation with diet, meditation and exercise I do not mind if I have a name to my disease. The key to feeling better and living longer no matter what ails you is to reduce inflammation and stresses that cause it. ;)

Maya23
Maya23 in reply to Roarah

Thanks for the link! I did have Lupus but after 4 years it went dormant with negative ANA and then I got new diagnosis of Fibromyalgia. I’ve also had lots of other problems due to inflammation including Pericarditis which put me in hospital twice in June, so I am certain that inflammation is the key. I eat a low inflammatory diet (no gluten, no cane sugar, limited dairy) and I’m guessing that has helped but who knows.

Roarah
Roarah in reply to Maya23

I hope it works for you too. feel better soon! Xo

This is precisely why I take my present stance regarding Lupus and autoimmune conditions.

I believe we harbour a genetic disposition to these conditions but that extra factors trigger them. If they can be triggered, then potentially absence of the same triggers can quieten them. I believe that this is why some conditions go into remission in some people.

But they can equally be reactivated. I have for a long time thought of my various conditions as a series of labels that can be added to or taken away from. Part of this is a coping mechanism, but I do actually believe it to be true.

I work to quieten my symptoms. I think sometimes it may be possible for a complete reversal, but sometimes when the body has been seriously under attack there may be damage that cannot be completely reversed.

So where does that leave a patient who has been given a prognosis that they have interpreted as there being a bleak future? Very confused and uncertain.

If my theory is anywhere near correct, then in future doctors may change the way they inform patients of what to expect of the future.

In APS at least. you pretty well describe the two hit theory! I too believe we have a lot of power to self heal or as you so nicely put it, quiet our disease, by following anti inflammatory life style choices.

See my reply to KayHimm on Twitchys post.

See what you think

I so agree about chemicals, diet and modern western lifestyle as a cause of more autoimmune illness and more allergy sensitivities. I also blame our over cleanliness as a cause. Too much hygiene is proven to alter our gut flora and might be a cause to higher incidences of blood cancers, autoimmune disease and allergy in western societies vs third world countries. Literally this is really all " food" for thought. Xo

I think the allopathic approach tries to quieten symptoms, but the pharma method just places a sticking plaster over the symptoms. If that sticking plaster is removed without any changes the symptoms are still there.

If the drug approach deadens the symptoms but the root cause is not removed, the symptoms can increase in strength requiring a greater medical cosh.

Longterm if the triggers are not removed the body will succumb to greater levels of damage.

That's my belief and I think that is why we must try to identify the triggers that affect us the most and try to make changes.

The pharma approach is necessary for most newly diagnosed patients. It may be necessary for ever But if we can learn what triggers the symptoms for us personally we may be able to take greater control.

I also know many patients who do not wish to do the work sometimes necessary to improve their condition holistically and just want a script to make it all better. My mom is this type of patient. When given the option of pharma or lifestyle changes she always pushes for pharma and goes out for cheesecake with her statin script in hand after a cardio appointment.

To be fair my doctors, as well as my mom's have forever promoted diet, exercise and lower stress way before drugs are offered. Cholesterol assays are always taken again in six months here if the first test is elevated before giving statins. Half the patients will try to control diet and exercise more but the other half continue on as is and get the statin in six months.

I blame a certain type of patient as much as Pharma and doctors sometimes. If there were less of a market they would not be so strong...

Xo

I agree that some patients may not want to make changes. But I dont think this necessarily come from a belligerent stance. Their viewpoint is led by prevailing societal attitudes. And the power of the WHITE COAT. By this I mean that if a doctor does not specifically outline changes that must be made, there is a belief that is must be ok to continue without changes. Allopathic doctors receive next to no training in nutrition. Unless they take it upon themselves to educate themselves after their studies.

It is often said that oncology doctors will tell patients that it is ok to eat whatever they want, when there is growing evidence that dietary changes can be beneficial in many cases.

Personally I differ with you in regards to statins. They are not a class of drug that I would take. Cholesterol is necessary for brain function.

Dr Malcolm Mckendrick, The Great Cholesterol Con (a Scottish GP), is an interesting read. He also has his own website

I am in an area where all doctors I and my DH see are md/ PhDs so my experience is they are more naturalpathic than maybe just MDs. My hospital's oncology has a functional team of doctors available to all patients, a nutritionist, behavior health services and yoga. It is shocking how little these free services are utilized.

My neurologist suggested behavior health for stroke pain and my former immunologist suggested the diet changes specifically and a cardiologist suggested to " walk like your life depends on it , for it does" I guess I am lucky to have doctors who focus on the whole patient.

I only take a statin, my cholesterol was already low, now because it is shown to lower inflammation and is showing high protective value in APS. I would never have agreed to statins or plavix or warfarin pre stroke but having had two massive strokes before 50 I now will do anything to avoid another.

I also no longer drink, I never skip my exercise, I meditate, I no longer focus only on my health possibly failing, I eat 40 grams of fiber all this to hopefully avoid another stroke and although I will continue to take the chemicals used for APS I do believe it is the other changes that have improved my antibodies.

I understand. I think everyone has to look at their own set of complaints and decide on balance the best route for them

My fella was put on statins for heart related issues but became one of the many who developed severe aches and joint pains. His doctor was reluctant to revise his medical opinion re statins but my fella weaned himself off them. In doing so the pains disappeared.

Now that he is doing active health research for himself and taking various supplements his numbers are better than before he was put on statins and he is no longer encouraged to take them.

I think its necessary to do your own extensive research if there is a particular drug you would prefer not to take. Its unsafe to just stop a drug without tackling the reason for being placed on it initially.

How ironic, My husband's doctor just took my DH, who has very high colesterol even on statins, off his statin due to gout and arthritis like symptoms with no known serum causes to see if the statin was responsible for his pain. He suggested to try flaxseed oil and beta glucans while off the statins to see if he could lower his cholesterol with diet.

I am researching ways to go off warfarin at this time. Fish oil is something I might consider if in a year or two my antiphospholip panel and d dimmer is still negative but it is a scary roll of the dice but my hematologist supports my choice in treatment.

I was on warfarin for eight or more years. I had what I really believe was a heart attack after it had already been suggested that I was a candidate for anti coagulation but I was unwilling at the time.

The event itself caused total paralysis, incredible chest pain and all the regular reported heavy arms and inability to breathe. I had a few days earlier been discharged from hospital following an admission for chest pain. Home alone at the time and unable to summon help I managed to over balance myself on the couch and reach my medicine bag. At this time I noticed symptoms that I judged were similar to a lupus flare in that in addition to all else that was occurring my hands felt arthritic.

I considered that my situation was serious enough to need attention but I was alone and the phone was out of reach. I managed to reach my prednisolone (steroids) and put some in my mouth to suck. I then lost consciousness.

I awoke some hours later feeling washed out but ok. I couldn't breathe deeply but was breathing. I then had a choice to call for emergency help.

But I had a preplanned clinic appointment with my cardiologist team the following day. An ambulance would have taken me back to my local hospital. It was my judgement call at the time that i would be better served by my specialist team than my local hospital. If I could hang on long enough. I had patient transport to the clinic appointment the following day, so I packed a hospital bag to take with me. I was admitted to hospital from clinic and my warfarin journey began.

More recent research of mine has showed that blood clumping can be seen by dark field microscopy and that this can occur with inflammatory processes. Maybe in this instance the steroids saved me?

I am not suggesting anyone do similar. I am not medically trained. I was in a situation with very few options.

But now years down the line I have been taken off warfarin. In recent years I have made great dietary changes which have possibly made a difference to my inflammation levels. At present doctors consider I am at more risk from anti coagulation than without it. I have now to ensure I stick to anti inflammatory foods to keep me in the safe zone.

What a scary event! I hate warfarin and plavix and hope to be one day without them too.

I am bruising so much presently but I have recently had a heart surgery so need to be on an antiplatlet for that and warfarin for the APS diagnosis. My CRP is still higher than I would like even though it has dropped substantially from when I had my strokes in the fall. Diet and activity are so much more beneficial for me personally than just my antibodies but also for my mood.

I feel mentally stronger now than I ever had even before the lupus. I honestly think my life long anxiety disorder may have increased my inflammation, white blood cells and antibodies more than my diet. I have always eaten pretty healthy. I stopped eating beef, pork and chicken in my teens.

Always loved fruits and veggies, have low BMI, cholesterol and blood pressure. Yet my CRP and ESR were elevated most of my life until I started CBT mindfulness. For the first time in my life I no longer experience butterflies in my stomach daily. I have not had that sensation in months and I have felt great since their disappeared and my serum reflects this change too.

The mind and body connection is a bidirectional highway. When one is blocked the other fails. My mind was blocked with anxiety and my body followed. But I know the other happens too. For some the body is blocked first and the mind follows. So treating both with diet, exercise and stress reducing therapies will hopefully keep benefitting my whole self. Xoxo

If the CRP and ESR are high there is likely still a degree of inflammation from some source. It could be an infection of some sort or the body reacting to something else.

If you manage to rule out internal factors then there are external factors to consider. Yes stress can cause huge problems but foods, chemicals, EMFs can all be contributory as well.

Its a puzzle to work through.

I agree with the mind body connection. See Bruce Lipton.... Your thoughts create your reality

My ESR is very low but standard CRP is at 3 so for autoimmune it is low but for cardio I think under 3 would be ideal. I am off to luck into Bruce Lipton I find if I say something out loud it comes true often. Xo

Are you able to contact your own rheumologist to get his input. Yes i would as for Ck levels to be checked as mentioned here. Lou xx

That has happened to me. I was diagnosed with Lupus in 2010 with positive ANA over a 2 year period, joint pain, face rash, sun sensitivity, fatigue and flu like aches.

Then 4 years later in 2014 I was getting joint pain, muscle pain/weakness, tingling & burning down arms and legs, and the same fatigue and flu like aches but my ANA was now negative.

I got a new diagnosis of Fibromyalgia and was told Lupus now inactive/dormant. I could tolerate being in the sun again (hurray!) Fibromyalgia is less understood I feel, and much of the treatment is trial and error but I’ve found drugs that help me manage it.

Was told it’s common for autoimmune illness to trigger Fibromyalgia. I have other health problems that link with it too. Good luck in getting your own results clarified. X

Roarah
Roarah in reply to Maya23

I believe my post stroke centralized pain is the same as fibromyalgia but since I had acute infarcts and subsequent inflamation on scans it was given another name. But treatments are identical with anti seizure drugs, ssri's, and CBT working best to help elevate either diagnosis' symptoms. I found CBT to be enough for my pain but am not at all against pharma if needed.

Xo

NewEngland3
NewEngland3 in reply to Roarah

Roarah,

I could not agree more with you on the stress of the anxious thoughts of my health further failing which I have also started projecting on my family members--seems most of the time the only thing in my head is further illness --it is very unhealthy and I am really trying to get out of it--what has helped you? I have gone vegan, taking omega 3s, turmeric and resting more, I do plan to get back to exercise soon.

Roarah
Roarah in reply to NewEngland3

After my stroke I began CBT therapy to help with PTSD. Although my PTSD diagnosis is stroke related I have always thought that every odd sensation I had or symptom a family member had was always something terrible rather than possibly just a benign idiopathic thing. A head ache was instantly a brain tumor in my mind. My husband's dry cough meant his rectal cancer had spread. So I obviously had a long history of health anxirety.

My PTSD therapy mostly is CBT with mindfulness. I feel this has changed my life. I also practice kk meditation which is shown in MRI to actually shrink the amygdala after eight weeks of practice. A large over active amygdala is connected to depression, anxiety and fibromyalgia as well. I also now practice yoga.

So for me I think a diet high in fiber, and brain rich foods( antioxidants, nuts and low sugar) combined with good sleep hygiene, meditation, CBT therapy and daily exercise are helping to alleviate my life long anxiety patterns.

Off topic, I live in New England too, in Connecticut.

Yes yes yes I was told it’s sle 12 months later luckily they said mmmmmmm think it’s mctd but don’t worry the meds are exactly the same as you have been on 🤔

It's so frustrating when that happens. In 1990 an xray showed crumbling vertebrae and I was referred to a hospital in Liverpool where they were carrying out a study on bone disease. Following 10 days as an in-patient they measured my 'input' and 'output' and carried out numerous tests including scans 2 bone biopsies I was diagnosed with early onset osteoporosis (my mother had it prior to her death at 54 and my sister was diagnosed in her twenties) so there was no doubt about the diagnosis the diagnosis. Their tests also showed that I'd started with early menopause so along with the meds of the osteoporosis they also started me on HRT. I was 42 at the time. Fast forward a number of years when at a visit to my GP practice I mentioned to the doctor (not one I normally saw and who had since left the practice) that I had osteoporosis and he looked at me as if I was making it up, telling that I didn't have that, I had osteopenia. Because of other things that were going on in my life at the time I didn't challenge him and never did find out how he came to that conclusion, so now if asked I simply say I have osteoporosis/osteopenia, but bearing then number of fractures I've had over the years, I'm pretty sure the first diagnosis was right. Good luck with it all :)

My Lupus and APS are technically in remission (via bloods) but no doc thus far has suggested I don't have it. And I still have plenty of symptoms, from fatigue to photosensitivity. They've just said what I am experiencing is typical for Lupus that is under control for now.

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