You know what no I’m sick of it 🤬: I’m sick of... - LUPUS UK

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You know what no I’m sick of it 🤬

Buckley123
Buckley123
45 Replies

I’m sick of having to prove I’m sick

Sick of explaining my symptoms over and over and looking for a reason

I’m sick of

Being given the least medication because no doctor will put pen to paper and commit

I’m sick of hearing your results are all negative

Some days I can hardly carry my head and some nights I can’t sleep my neck legs toes and ankles feel as if they might actually snap

Elevated ace levels don’t mean anything - so why run the test

Brain lesions - just migraine

Joint Erosion 🤫 your okay clicky hips

Elevated Thyroid antibodies normal - then why have levels atal

Clearly there comes a point when you are seen as s negative

If there is such a thing then all agree

If not I’m going to actually give up because all I can see is money grabbing or over run doctors that couldn’t give a flying shit about me

And just so they know having a mum who died recently isn’t a reason for the way I feel it isn’t all in my head.

You have real results that you ignore

No plan

If you think my mum actually dying was the worst thing I’ve ever seen then you clearly haven’t seen someone slowly disappear and this started many years ago since I was a child so the next doctor who says that I’m going to choke

Rant over x

45 Replies
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maye1

I’m good at being direct, not as good with the softer stuff so I hope this isn’t too blunt - You’d mentioned that you have UCTD. That IS a diagnosis. Doctors can not return us to 100%. We have to do some (or a lot) of this on our own.

I hope you can find ways to feel more in control.

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Buckley123
Buckley123
in reply to maye1

Hey may1 thanks for your reply.

Your not blunt I understand

But I had received a letter from my neurologist and as usual it’s stated what’s happened but not why no mention of uctd same with rheumatologist told me that’s it‘a uctd

And then never wrote it in his letter because I see a member of his team.

Who thought there was no findings to support uctd diagnosis I had hoped my neurologist letter would state it but it hasn’t I feel a lot of back peddling going on is it or isn’t it and if it’s not can we find out what it is ! This post is a little embarrassing for me now that I have calmed down xx

3 likes
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Salzer
Salzer
in reply to Buckley123

Don't be embarrassed! I know exactly how you feel. I don't have a diagnosis written down either. Consultant mentioned a lots of different names 'lupus-like', 'UCTD', 'autoimmune disease' when he diagnosed me but nothing is written in the letter to my GP which is all I have to bring to my next consultant and new GP. So I will probably have to start from scratch again explaining the whole saga. If I wasn't so tired and worn down by it all I'd be angry too. I know lots of people say doesn't matter what the label is as long as it's being treated, but it does matter when you have to explain it to other medical people and new doctors and pharmacists and fill in health forms etc, etc. You need to know what you're supposed to tell them. And it's not wrong to want to know what you are up against. But unfortunately it doesn't seem that easy and looks like we have to live with this uncertainty for a long time 🙁

5 likes
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Buckley123
Buckley123
in reply to Salzer

That’s exactly it salzer

This is what they do to me too I don’t see how they can do it ! It’s lack of

Commitment because they are not sure 🤔 so if you’re not sure then find out for certain.

One doctor told me IF I had something wrong with me it would show eventually with no one being able to dispute it I asked like what he said some times people have a bleed on the lungs or a stroke 🙄🔨 and then you will be treated 🤨 great thanks 🙏 il look forward to that stroke then 😎 xxx

3 likes
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Salzer
Salzer
in reply to Buckley123

🤣 Jade, I've thought that too! Im same as you, next appointments are late December/early January too so I'm just doing what consultant said until then and surviving on painkillers and hoping hydroxy will kick in soon😒 And hoping noone else asks me if I have a medical condition! They don't put enough room on those forms to say 'well I might have this, but maybe not, I don't know, they don't know, they might know, who knows'😁 xx

2 likes
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maye1
maye1
in reply to Buckley123

Nothing to feel embarrassed about. At all. Xx

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thestorm

Hi Buckley, First, I am so sorry to read of this post, it is quite disturbing to many of us, and true pure frustration, with suffrage. I promise to pray for you on my list always. Second, I wrote a post back here a few months ago, called "on the hamster wheel and help." I can truly relate to how you feel, and so can others here. And at least you have here. The here and now from us all. Posts that spin the mind, chase the Doctors down, nauseating rollercoaster and all of us like it or not in one way or another, are caught on this marry-go-round system. The health care industry has great minds, they are just not all in the same place, as we would like them to be. I strongly encourage you to pursue your truths, never give in or up! Keep the Doctors on there toes, keep them thinking, keep them wondering, always question them, and never show them defeat! You are a strong one, with a family riding the ride of your life. Do it for them and yourself. We, meaning people here will always look for ways to connect with people like you, that's how we all help each other. So know you are heard at least here, and we do care. I send you comfort, peace and all my blessings for better days ahead. thestormxx🤗🤗

8 likes
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honeybug
honeybug
in reply to thestorm

Great reply sweetie

EJxxx

2 likes
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thestorm
thestorm
in reply to honeybug

Blessings and wellness to all.....:):):) thestormxxx

1 like
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honeybug
honeybug
in reply to thestorm

Xxx

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Buckley123
Buckley123
in reply to thestorm

Thanks so much I will have a look at your Previous post it’s not a normal post for me I just feel lost with it all.

I literally have one Doctor Who believes I have UCTD muscle weakness problems with myself Oesophagus accouted for the brain brain lesions

Joint pains which I told him at the time I didn’t get much heat to them but now I do seems to come on a lot worse you know he really did say all the things that are wrong with me and I went to see somebody else and he wrote a letter saying that there was no findings to support the UCTD diagnosis no muscle weakness gave me some acid reflux medication told me I looked fine

I tried to get back through to Dr d Cruz I can’t get past the secretary I said he will reconsider look at all my paper work again and let me know in January I asked if I could be seen but the clinic are full of have to wait till the 31st January for appointment or for November if I pay but I don’t see why I should have to keep paying I have all the findings are there or they’re not and my neurologist is going off of what dr Cruz had said so he can’t provide me with any more medication then 200mg hydro a day the bare minimum because it’s more of a rheumatologist area to treat to him it’s job done.

My joints are getting worse I have been up 3 nights in the last 8 days all night for pain I’m my legs and hands.

I still have to get up for my children I can’t work my life Is turning missable

I was so terrified when I got the ms diagnosis because of my mum but now it’s taken away and no one wants to help me 🤦🏼‍♀️ honestly feel defeated xxx

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Buckley123

I don’t know why some words are like that 🙃😌🔨 xx

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stiff19
stiff19
in reply to Buckley123

So sorry Buckley, it’s frustration that makes you rant I have done it and can feel embarrassing but then embarrassment is the least of our problems. For years I searched for answers and as a whole told medically unexplained, told fibro, told on clinical presentation possibly this this or this, then bloods clear so not , this test clear so not that neat little box,but not once then do they acknowledge symptoms and how they affect you, when they need to acknowledge if they don’t have an answer but persistent problems need the same help as a diagnosis, I find it painful that we have to wait for an emergency before acknowledgement, when told if you get this or that see your doctor. If prevention is better than cure, although there’s often not a cure but worsening, I cannot understand why not more is done to help undiagnosed equally. I am slowly worsening myself over past couple of years, I find it comforting that I’ve not had a huge emergency, but I do worry that all these problems are going to lead to it. Why wait for something to show in bloods for years when visible symptoms are present,and I’m not totally clued up but when a healthy person can have something show in blood that if they got certain symptoms could help diagnose yet someone unwell who doesn’t have that something show in blood yet suffers symptoms and doesn’t get diagnosis then ? Help should not be down to luck of what your blood might or might not show,we are affected by symptoms the same way I just feel mentally if you know the reason by way of diagnosis can help make it easier to understand your health and maybe a bit more understanding from others.it is a living hell. My clinical presentation apparently suggested a few possibilities but clear bloods apparently ruled it out, but not everything is going to show in bloods and proven countless times. Even worse in my situation just skin findings alone which told not right and suggest vasculitis after clear blood test , so was my skin clear! (NOT) or symptoms. I asked why is skin suddenly like this? Why is that like that and told it’s normal.so what do you take from that , it’s normal if not in bloods, it’s not right if it is? This is just one thing, but I think we just have to do our best and carry on, I am embarrassed but simply can’t afford to go private, so try and do what I can to carry on alone, I get moments where I think I need answers but in all honesty I haven’t got the fight in me, , or the faith I don’t even go to doc no more and know I should but cant,I was so certain once my symptoms led to visible ones that I was going to get some answers , I was convinced I’d know what was going on being referred to rheumy but no. I have found great support on here and hopefully some cyber friends and in all honesty that has helped me more through tough times than going to doc , maybe not medically but the support and understanding stops me becoming depressed .

I don’t know the answers for us but I know they are not forthcoming, so try and stay strong, you are not alone , I am sick of it too, but we will just have to try to live as best we can on this bumpy road but don’t have to do it alone with some of the people on here, but yes it is a lonely, scarey frustrating road.

Nothing will help other than know what we are dealing with, but know you are not alone with your struggles, no comfort I know , so rant without embarrassment i think we have to.

Take care 🙏

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KayHimm
KayHimm
in reply to Buckley123

Oh, Jade, my heart really goes out to you. After losing your mother to an autoimmune diseases, you now have scary symptoms that point to an autoimmune disease but no agreement on the part of doctors.

I can’t get your doctors together to give an accurate diagnosis. But I can tell you my experience that is similar, and you may feel less alone. When I was your age, when the understanding of connective tissue diseases was expanding, I had symptoms that led my internist to eventually send me to a rheumatologist for possible autoimmune disease. Though I had had anemia and minor ESR elevation, I had no other lab abnormalities like you. The rheumatology tests were all negative except for a false positive VDRL. They didn’t have anti-cardiolopin tests back then. Graham Hughes had discovered them but they were not available in labs.

I was told I showed signs of autoimmunity (didn’t know what that was) and that since I was improving, maybe it would be a temporary thing. But I was also told that I would be watched. I think that is the difference between what you are experiencing and what I experienced.

Medicine is just not that advanced to be able to make diagnoses much of the time. So with these illnesses they need to see how you develop. Could they be taking a risk that damage is being done? Apparently, they do debate that, particularly if they highly suspect lupus. But they use their best judgement.

In no way to I feel you will be abandoned by your doctors. Your neurologist will follow your MRI, as mine does. The radiologist and neurologist can only speculate as to the cause from what you describe. It is not like a lung biopsy for cancer or an MRI after a major stroke. You will be evaluated if you have new symptoms.

Finding a balance between getting answers and being comfortable with the doctors not knowing is a long process.

Dr d Cruz is a very experienced rheumatologist from looking at his research and position. He has diagnosed you with UCTD based on your total picture. Others can disagree. My rheumatologist told me if years ago when I questioned him about my diagnosis that if he presented me to a panel of rheumatologists, some would say lupus, some UCTD and some nothing. Sounds like you, right?

These diseases evolve over time. You may, like many of us, develop new clues and become positive with respect to diagnostic tests.

I do think you should see your GP when your joints are hurting. They need to know if there is swelling.

This process is a tough one. We can all understand your frustration.

Xk

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lupette
lupette
in reply to KayHimm

Me too :( I was actually diagnosed with lupus in 1997. I had lots of symptoms back then and the bloodwork to match. Since then though, the blood tests are more specific, and the doctors now say UCTD or nothing. I have all of the autoimmune stuff that everyone else has . . . Hashimoto's, Raynaud's, Pernicious Anemia, widespread tendonitis, etc. In the past I had a frozen shoulder, ganglion cysts, ovarian cysts every month that ruptured twice. I had an ectopic pregnancy when I was younger. I have always been unable to stay in the sun without getting sick. Stress makes me sick and some foods too. The sickness manifests in lots of different ways. Brain fog is the most worrisome for me. I also get migraines, and I have strange tongue swelling and night sweats (day sweats) and I am constantly getting hot and cold and hot again. Sometimes, it happens so quickly that it becomes almost disabling. Sometimes I get joint pain and the tendonitis pain that is always there often gets really bad. I always know when I am about to get sick because my scalp starts to hurt.

I have mostly treated myself over the years. I had a good gastro doc who started me on fish oil supplements years ago. I have taken them ever since, along with lots of other supplements, and I believe it has helped me to stay well, by reducing inflammation.

I hate these days to go to the doctor because they look at me like I am a nut. They always want to give me anti depressants too and I am NOT depressed. Recently, I had bloodwork done. I was in the middle of the worst flair up I had had in years. They looked for some inflammatory markers . . sed rate and CRP but both came back negative. I think it was impossible. I have always gotten positive inflammatory markers when I felt sick in the past. Additionally, and at the same time, I had a skin condition on the heel of my foot that didn't respond to any treatment. The dermatologist gave me prednisone just days after the blood was taken. The steroids worked and almost immediately the stabbing pains subsided. It took about a month to clear up but now it's fine. The Prednisone also halted the flair and stopped the migraines I was having. I googled the skin condition that I had and found that it would almost always . . 97% of the time . . cause one or both of the inflammatory markers to be elevated in the bloodwork. So now I wonder . . did the doctor even send the bloodwork to the lab? Or, if he did then, did the lab even test it?

Sorry. . I will try to just stay away from the doctors now. I hope that I will be able to.

Now my rant is over . . smile.

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KayHimm
KayHimm
in reply to lupette

Can relate to a lot of what you say, Lupette. Yes, I agree that with better testing they don’t like to diagnose lupus unless you meet certain criteria. UCTD is more appropriate.

Are you sure they aren’t trying to put you on anti-depressants for your migraines? All those neuro meds are used interchangeably. You might want to ask. My head is better on a cocktail of anti-seizure, anti-depressant and beta blocker meds. All these drugs sort of quiet the brains, I think.

Sometimes they have to treat without seeing signs in the lab work, right? You are like me in that the neuro stuff responds to prednisone. They are learning more about the ways these auto-antibodies affect our brains.

Keep in touch.

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lupette
lupette
in reply to KayHimm

Actually yes . . .the most recent suggestion to take the meds was for the migraines. (good catch!) I have been pretty well lately, and haven't had any headaches that were very bad (a couple of mild ones only) , since I took the Prednisone last month. Having read your reply, ( thank you for that) I think I will pick up the prescription that I left at the pharmacy, and when they return I will try them. Thanks!

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Buckley123
Buckley123
in reply to lupette

You know lupette I really appreciate your reply we are also very similar symptoms wise and negative bloods almost exact.

My thyroid is playing up also with raised tpo antibodies pointing to hashimoto’s

I have so much pain in my

Tendons what is widespread tendonitis?

I have pcos also and pernicious anaemia

Stress makes me so ill my face aches and my scalp tingles as I get sick hot patches

And my face feels so full and stabbing pains in my eye with funny vision

I get Tongue swelling and twitching of the tongue which is so odd

I also get so hot for no reason can make me feel very unwell in seconds.

I really do appreciate your reply

How are you on yourself xxx

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lupette
lupette
in reply to Buckley123

You sound just like me . . I feel for you. Do you take fish oil? I find it to be what helps me the most. I buy the good ones at Costco (I live stateside) and I take 2 or 3 a day. When I first started taking it . . I took even more. It takes around 45 days to fully take effect. My gastro doc's name was Michael Lyons. He wrote a book about it . . here is a link .. . amazon.com/DAYS-NEW-LIFE-Fr...

I also take Meloxicam off and on. It helps the tendonitis. I don't like to stay on it long term, so I take it only when I really need the extra help. Interestingly . . it also helps me think better. I often wonder if I have inflammation in my brain. The MRI's show some stuff . . I think it said lancune (??) Anyway I did google it and it said these are related to migraines and can be caused by mini strokes.

Do you have a positive ANA too? I bet you do. We are very similar.

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Buckley123
Buckley123
in reply to lupette

I have scarring on my brain lesions they call them this is why I was first diagnosed with ms..

No my ana is always negative But I have heard it can be negative for years and then turn

will defo try the fish oil and the meloxicam.

Xx

1 like
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lupette
lupette
in reply to Buckley123

Mine is positive (it used to be highly positive 1:640 or 1:1280) but then when they do the panel . . . anti Ro, anti DS, etc. . . it comes back negative. I have also been tested for Sjogrens and found not to have it, in spite of having all the symptoms. I have dry eye, dry other stuff and I get nose bleeds all the time. Oh . . and I have alopecia but not on my head . . it's down further . . wink wink ;)

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Buckley123
Buckley123
in reply to lupette

I have never asked the readings of my Ana just always been told it’s negative 👎

All my antibodies have been negative too. I have dry eyes just put my drops in and my mouth last year was so dry not so bad now but I get swollen scalloped tongue also my skin is dry.

I have higher ace levels and thyroid levels but that’s it and pa

I don’t think it’s quite shown itself yet tbh

My joints have hurt In my hips for years but not like now I’m my wrists and ankles fingers and feet neck and only recently I’ve noticed heat coming from the joint whilst it hurts xx

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lupette
lupette
in reply to Buckley123

I went into the hospital in 1997 for 6 days. They had no idea what was wrong but eventually figured out that I was seizing because of no thyroid hormone in my body. My tsh was 97 at the time. I didn't go coma though :D What an ordeal that was! They almost committed me.

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Buckley123
Buckley123
in reply to KayHimm

Thanks Kayhimm every time I think I’m getting somewhere its ten steps back tbh I wish I never had the brain scan to be honest with you it’s put the fear of god in me 🤦🏼‍♀️ I should be happy that the doctors are not concerned when they thought it was ms I would have given anything to be in this situation but this isn’t much easier more of a battle🤦🏼‍♀️

We are Very similar in stories i hope to keep on the same path it’s just hard to un see or trust professionals that have let you down in the past and with my mum doctors did time and time again.

I do try to put myself in a different category to my mum but when no one will agree or commit to anything it’s hard.

I get so frustrated with it all I know it’s autoimmune and I’m 90% sure it’s uctd and I do believe I will be fine struggle but okay 👌

It’s just hard now mums gone I said to my partner last night I don’t have a single person in my life who would put me first since she’s gone.

My mother in law comes to some appointments and she’s good but she doesn’t care like my mum would 🙄 and I know that is obvious

Any ways looks like my thyroid is starting to play up antibodies are rising

So hope to have more to say. Dr d Cruz at the end of January xxx

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thestorm
thestorm
in reply to Buckley123

You are amazing, and passionate about knowing your own body, and its symptoms. I will bet that you journal all that you experience. If not, please start a book. Call it, your life, day by day. Take pictures of anything that shows up, and keep putting that to your Doctors. Also be honest, and tell them how theses things make you feel in the "real" world. We here you, and know the feeling very well. I personally have a very hard time with Doctors, as I also lost my mom to diseases that could have sustained her life a bit better, but that's a long story I will not but on anyone. You keep faith, care for your loved ones, post here as you have many friends, with caring things to share. I will keep praying for us all... Be at peace, blessings, thestormxxx🤗🤗🤗

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Roarah

(( Buckley))

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Buckley123
Buckley123
in reply to Roarah

❤️❤️

Reply

I think it might be useful for you to take a second person with you to some of your appointments

Then there is a witness, if you like, to proceedings.

It may not change the outcomes but you will have a better chance of your points being given serious consideration.

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Buckley123

Thanks you know I do but it’s Sod’s law when they agree with me 9/10 I’m on my own for some reason and when I see another doctor who disagrees and says I’m fine my partner is there which can cause a lot of issues for me then I get no help with my kids and he puts pressure on me to go back to work xxx

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honeybug

My dear friend Buckley 123

🤗🥰🤗🥰🤗🥰🤗🥰🤗

OMGoodness can I relate to the emotional hurricane that you just stated.

I hear and empathize with you sweetie.

I’m 68 1/2 now. Let me give you a little bit of my struggle...

I was born with a serious case of thrush because my late mother was experiencing a bad case of yeast infection at the time. Bless her...having that curse and unable to be treated until after birth!!! I pray NO other woman experiences this...I shudder to think of it.

I could barely nurse due to being infected throughout my entire GI tract. My dad had to paint my esophagus using a 12inch Q-tip for weeks which had many I’ll effects on my health in the future...one being staining my adult teeth yellow (which life long embarrassment ensued). I was underweight an malnourished which effects every cell.

Fast forward 6 years my mother enrolled me in ballet and tap dance classes...after all the expenses of costumes and accessories and lessons I was rejected because my ankles and feet simply COULDN’T carry out the precise movements my brain precisely understood and ordered my limbs to do. I was devastated...fast forward to 2002 my rehab specialist diagnosed me with hEDS.

I had joint issues and severe reactions to high heat and humidity as young as age 4 which progressed lifelong w/o diagnosis.

At age 12 puberty hit which caused a plethora of symptoms. My mother never believed my explanation of excruciating pain and severe symptoms with my monthly cycles and the doctors said psychosomatic/all in her head.

I also experienced my first bout of unexplained numbness and freezing.

Age 18 experienced severe heart symptoms that worsened with time. Hospitalized 3 years later with heart overwhelming heat and pain difficulty breathing and countless hot swollen bright red lumps covering my legs from knees to my soles.

Age 27 had another plethora of symptoms doctor diagnosed as overwhelming unbalanced hormones. Overwhelming weakness and fatigue.

I will spare you the ongoing never ending suffering and being assaulted accosted dismissed judged erroneously hated constantly being called a liar or crazy by the countless doctors I’ve seen.

Results of years for diagnoses:

Inherited Erythromelalgia......60

hEDS......................48

Raynauds Phenomenon.......12

Seriously chronic Endometriosis with multiple ovarian tumors and uterine polyps................................48

Mitral valve prolapse..........21

Erythema Nodusum............21

Flushing skin mottling.......21

Systemic Osteoarthritis .....65

Chronic Fatigue Synd..........27

Severe Fibromyalgia............41

Cervical and Thoracic scoliosis...64

I have 60 confirmed diagnoses and 2 pending so I’m not going to continue to detail them for obvious reasons.

My main reason for this lengthy reply is to let you/and others know that you are not alone in your struggle to get anyone (especially the medical profession) to believe YOUR TRUTHS.

What many doctors/practitioners fail so miserably at is the fact that the textbooks they learned from are just baselines from where to start. Each and every patient is an individual with variants in symptoms because of our individual construction is as individual as our fingerprints. We all are composed of the same ingredients that makes us humans but with obvious differences like ethnicity and traits.

They forget to accept not everything will be found in those books and that they MUST think outside the box for the unexplained/unusual.

I’ve cried an ocean of tears (which broke my tear makers (Sjögrens Syndrome ....55years) over all the deplorable mistreatments I’ve endured. I’ve gone through all the gambit of emotions and depression that ensued afterwards as I continued to suffer without ANYONE to turn to outside of Heaven. So I truly get it.

I AM here for you. I do truly relate to all you are going through with your invalidation...it STINKS...but it is your reality.

NEVER forget that no matter how many times you experience negative treatments/results you are telling your life truths.

You are NOT:

crazy

Psychosomatic

munchhausen by proxy

Lying or

Delusional

Don’t ever let THEM win by convincing you if whatever THEY tell/told you.

NEVER give up or in. Lick your wounds as they say and carry on.

Keep searching until someone truly listens/ cares about YOU and your wellbeing.

I understand it is more difficult in the UK due to your healthcare setup and the nearly impossibility of getting the same doctor for continuity. If at all possible go private. For the worst of your conditions try your best to go private.

Ask those in your region who they would recommend and try to see that doctor if at all possible.

My health has deteriorated exponentially. I now have narcolepsy that totally controls my life. My thyroid is nonfunctional and so my fatigue is rampant atm. However I will respond to your replies as soon as I can should you choose to have me as a friend and supporter.

I truly do wish you the best outcome sweetie.

As I’ve said countless times on this forum if I only had a healing wand I would heal you/everyone myself included. Since I don’t the best I can do is pray for everyone lend my support and love ❤️ to all

Take care sweetie and a abundant blessings.

Much love.

EvaJo 😊🌿🌸🦋🙏🤗💗😘😇🕊

9 likes
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maggielee
maggielee
in reply to honeybug

Here, here - nice to read your positivity before facing another day 🌅....great feedback.... 😄 ml

3 likes
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honeybug
honeybug
in reply to maggielee

Than you maggielee 😊🌿🌸🦋

I hope you have a great day and know that I care about and love you too sweetie.

EJ xxx

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maggielee
maggielee
in reply to honeybug

Ahhh thank you, super kind & helps...woke up to see my husband dismantled the attic (for insulation) & left it all in my daughters clean bedroom - boards, tools, etc...not a drop cloth anywhere 😰 just more work before work or lots of non violent communication on the little things that would help, bless him 💝 still sleeping..

So hopefully buckley & I will benefit from your inspiring words today...biggest hugs to you & buckley, we battle on 👌💪...ml

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Buckley123

I hope you do have a lovely day xxx

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Buckley123
Buckley123
in reply to honeybug

Thanks Evajo

Such a supportive post I have replied to you and the storm up above xxxx

1 like
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honeybug
honeybug
in reply to Buckley123

xxx

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honeybug

OMGoodness ml...I have had countless similar incidents myself where OH is doing great things to upgrade our home w/o considering the aftermath and that I had to do all the cleaning up too. Big hugs and much empathy for your situation dear. As you are doing the cleanup remember my hugs and loving support.

EJ xxx😊🌿🌸🦋

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Poppypig

Don't give up Buckley. Think of other possible solutions, change of rhem maybe, but no letting the b*****ds get you down. Xox

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Buckley123
Buckley123
in reply to Poppypig

Thanks poppypig

You know I thought at first major organ involvement would speed things up but it hasn’t.

My rheumatologist is good unfortunately his team isn’t so good they don’t seem to be of the same opinion 🤦🏼‍♀️ basically cal each other liars 😂🔨 leaves me in a situation of no one committing 🤦🏼‍♀️🤦🏼‍♀️ xxx

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Sara_A

How long has all this been going on for you?? When did u start feeling unwell initially?

As I think mine started age 21 and didnt really properly get a diagnosis until about age 29 yrs??

They diagnosed rheumatoid at 21 which it isnt and then I've had different hospitals say there is nothing wrong despite having already been diagnosed somewhere else already. I now have to travel nearly 2 hrs for my appts to a lupus specialist just so that I get the right care as the rheum at my local hospital said I was fine!

You cant give up I know u feel like u want to but u know ur body and that something isnt right so u have to keep on at them.

Have they tested for Antiphospholipid syndrome?

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Buckley123
Buckley123
in reply to Sara_A

Thanks Sara that’s a long time for you I have only been doing this a year half officially since it really kicked in and I felt The brain changes with jolting and pain. But actually my brain has multiple scarring so it has been going on for some time as I have felt not right for about 6 years after my son was born but put it down to stress because he was not well and then I had to nurse my mother and three kids ect but it became obvious after my mum died from ms.

I’ve had leg pain for years hip pain caused by corrosion of both hips and bone marrow changes which I never had a answer for.

I have been tested for sticky blood my Nan has it but it was negative 👎 all blood work is negative xxx

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Sara_A
Sara_A
in reply to Buckley123

The majority of us I think have an average of 6-7 yrs to get a diagnosis, it's a long hard battle and u end up getting labelled as a hypochondriac, depressed or anxiety or something.

U just have to keep on going and find someone who will listen!

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Buckley123
Buckley123
in reply to Sara_A

I have read this before 6-7 years seems like such a long time ❤️❤️ thanks for your replies how are you xx

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Twitchytoes

Hi Jade. You know my story I think but I just wanted to say that seronegative diseases often show up in tissue biopsies rather than blood - but for some reason lots of doctors don’t know this or don’t encourage patients to go through with them.

Having been diagnosed with RA for 4 years (I always knew I didn’t have it fully) I was then undiagnosed when I relocated. The chap who undiagnosed me made very cynical comments about the London Lupus Centre just diagnosing UCTD, Lupus etc to keep numbers you for the research funding - which shocked me at the time. 🤷🏼‍♀️

I was then rediagnosed in a third Scottish hospital with Sjögren’s by lip biopsy. My ANA has been negative/ normal, equivocal, clear positive and last taken, weak positive during the past 5 years. My RF was positive when RA was diagnosed in 2011 but never again since.

However I’m a great believer that seronegative rheumatic diseases can present neurologically first, and this is what several rheumatologists have observed in practice. I think one day the world will understand that we human beings are highly complex and organic creatures and cannot always be be neatly boxed. Seronegative has a different and unique pathogenesis of its own I increasingly believe. Much more research needs doing on this.

Meanwhile is there is any way for you to get to see Dr Price in Swindon? She charges much less than those you have mentioned and only does private work for personal interest and because she knows how under diagnosed Sjögren’s is and wants this to change. So it might be worth you seeing her as she will at least give you her straight opinion and won’t be influenced by what others have said to you.

I really relate to your vent. I recall writing a poem once called “Just Sjögren’s” (after the “Just William” books) and it simply listed all the many “just” diagnosis’s and comments I have had from doctors over the last 8 years. I kept having to add to it as I remembered new “Just William’s”!! 🥴🤷🏼‍♀️😳

When I was your age I didn’t know that autoimmune diseases, other than AIDS, existed let alone that I had suffered one already as a child and post gestationally and was going to be diagnosed with one at 40 and then another two or three as the years roll on. Sometimes I think it was easier not knowing that there was a reason for my symptoms other than that I was just lazy and hopelessly allergic! Hang in there and keep venting when you need to. Xx

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Hayleyrose28

Hi

I’m so sorry you’re going through this, I completely get how frustrating this must be for you.

If it gives you any hope, I was diagnosed with UCTD / ‘lupus-like’ for a while (due to only having positive ANA). I was tested for ENA and dsDNA multiple times, and the results were persistently negative / in normal range. I think my old rheumatologist must’ve tested me at least once or twice a month. However, suddenly at the end of September, my dsDNA came back extremely elevated - which Prof D’Cruz called sero-conversion, I think - and I could then officially be diagnosed with SLE. Also, this summer I had highly elevated antiphospholipid antibodies, which were negative in 2018. Although I understand there are guidelines, I found it somewhat frustrating that it took for the dsDNA to suddenly appear as positive to be officially diagnosed with lupus.

Anyway, I guess my point is, blood tests can be extremely frustrating when the results do not correlate with the serious and very real symptoms you are suffering - but they can alter suddenly as mine did last month. Equally, as Twitchytoes says above, sometimes sero-negative conditions can only be detected through biopsies (this happened with my mum, who would have never been diagnosed with her rare and serious condition without the biopsy).

I really hope you get the medical support you need, and someone who listens to you. I, and I’m sure many others on here, appreciate how frustrating it can be on this journey - so always feel free to rant on here. xx

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