Really lost, is this a familiar story?

[cdow]

Hello all,

I hope you're well and keeping safe.

I would just like some opinions or ideas on what's going on with my fight for a diagnosis story

I have been ill the past 2 years, I am 28, started with severe erythema nodosum, joint pain, rapid weight loss, rashes etc

It is on and off, seeing rhuemotologists, who test for my ANA and it has only been positive once, the rest of the time, its negative. My blood count is normal, and inflamation elevated slightly, highest was 90 at the begining of my illness.

I have no joint damage, they checked on a ultra sound.

I have daily complaints of achey joints, swelling of the knees (looks like water retention) hives from the sun, a ring rash, mucus (from stomach, sorry TMI) chillblains on my toes, massive cold sores on the out side of my nose

I keep being told so many different stories from my GP and rhuemy, some saying its all linked some not

What can I do?

Thanks in advance xxx

[Kevin53]

Are you receiving treatment to alleviate the problems? Best wishes Kevin

[Boudica1]

Hi cdow, yes sadly it seems to be the way it can be for some when it comes to getting a diagnosis.

I hope you are at least getting some treatment for the symptoms.

I have a diagnosis of Sero-negative Sjogren's Syndrome and like you I had one blood test for ANA positive but the repeat tests that they are doing each year since (3yrs) negative. But despite this they also this year repeated the C3&C4 blood tests C3 came back below normal range and C4 right on the bottom number of normal. They seem to be looking for Lupus or whatever but I have given up on the blood tests for a diagnosis.

My symptoms are treated and I have a great many thanks to all the hissy fits my body likes to throw, they came up with the Sjogren's diagnosis because of the dry eyes, nose with sometimes sore spots inside, very dry mouth sometimes sore and dryness everywhere else including the lady bits.

I had a skin biopsy because of the ever present rash on my back and was diagnosed with Urticarial Vasculitis and Jessners Lymphocytic infiltration. Plus I'm photosensitive so have to keep out of the sun or covered up like a mummy and feel like a Vampire sometimes 😂.

The achey hands and feet and sometimes knees. For some strange reason red nail folds and at times very cold or hot hands and feet. My dermatologist got quite excited about this and thinks I also have Raynaud's 😕. Lung problems and Arrythmias plus diverticular disease.

I'm glad I'm not a animal or I'd probably have a one way trip to the vet's 😕.

Luckily most of the time I'm not too bad apart from the occasional flare up but have a tendency to sleep through most of them.

The main drug that they have prescribed me is Hydroxychloroquine and Zapain for the pain and the inhalers for the clapped out lungs, oh and vitamin D because when my Rheumy tested the level it was very low which is common with autoimmune disorders.

Sorry about the long post but you are not alone in going through the long and winding road for a diagnosis.

Take care and keep safe.

♥️💞🥀

[KayHimm]

You have a lot going on and it sounds like you feel pretty unwell. What did the doctor who thinks these symptoms are all linked say it might be? What did the other doctors say?

From the information you have given I can see why they are unsure at this point. You might want to ask what other tests were positive with the ANA. Did the rheumatologist note the swelling in your knee? Have your nose ulcers been described? Although photosensitivity is a feature, it no longer is used in classification. It does not mean that is not significant but that it is a difficult feature to document. Did anyone say whether the hives are consistent with lupus photosensitivity?

A lot of questions, I know. But all of these symptoms are taken seriously. They have to be careful to make the right diagnosis.

Would you consider asking straight out what makes them think you do not have lupus? Would they consider starting you on medication to see if you respond?

I can understand that you would feel lost and maybe frustrated after being sick for so long and not treated.

K

[eekt]

Sorry to hear you've been suffering cdow….there's great info on getting a diagnosis on the Lupus UK website, plus the BSR guideline (academic.oup.com/rheumatolo... lists all the tests to be done in Table 6, and have a look at Table 5 to see if you recognise yourself...nasal ulcers, photosensitivity, joint pain are amongst the clinical signs...you could take these tables and the Lupus UK material to your doctors?

Be well, stay safe xxx

[ShannonB]

Sorry to hear that - diagnosis can take a long time but I encourage you to be persistent and continue reporting the symptoms you have. I have only a few times had positive bloods so am considered seronegative lupus but have a definitive diagnosis (or as definitive as it gets with lupus) for over 35 years now. And unfortunately my symptoms continue to confirm it’s autoimmune. Try to find someone who will listen to you. Wishing you well.

[stiff19]

Dear cdow

I’m with you here, you sound like me, and have my sympathies and best wishes as it’s very hard.

I read so many post like yours and my own , many suffering same sorts of symptoms and searching for answers or help that does not come readily for many , your symptoms seem acknowledged by the query of linked or not which is something.

Like Boudicca I have given up on blood tests. I know whatever inflicts there are all different levels and we are all different.

I have no understanding of what causes my problems yet, with array of symptoms, the hot weather we’ve had of late exaserpated som symptoms the change in weather today has changed them again , so quickly . I’m not receiving treatment other than tramadol for pain vit d and iron , I would give anything to take hydroxy again, I don’t like drugs but in two years that was the only thing that afforded some relief.

I could have written your post and relate totally , I was lost and found this forum , just keep searching, if you are lucky to have a good gp use them ( I’ve not) and rheumy. Have you kept a diary? Are you given anything to help treatment wise or any investigations.

I can’t help with anything like that or advise as in no position of knowledge but someone here might,but if it helps I can tell you , yes it’s normal in looking for answers to feel lost and it’s a tough situation, but there are many of us so understand how you feel.

I don’t know why but it’s a big battle for some to get diagnosis but keep pushing for answers and help .

Best wishes , best of luck and take care 🤗

[LalSD]

Dear Cdow, hope you get better and find a diagnosis. Difficult to say anything but IF there is a slight chance of your illness being lupus related with over active immune system issue, I can share my route to diagnosis. Lupus is a set of illnesses under one roof- I call them LUPUS family. This family has many underlying illnesses BUT all caused by lupus(over active immune system). As our immune system behave in a strange way and hurt us. The process is repetitive until we interfere with this production to stop immune system attacking us(supress and protect from other infections too). There is no cure but we can have a healthy life span given we are careful. There are around 11 symptoms where doctors could call 'possibility of lupus' but it can get years to get a diagnosis. Mine took about 4 years. The initial stages can be diagnosed as 'Undifferentiated Connective Tissue Disease'.

(I once took an established therapist friend to assure the doctor I was not mad, this illness was not in my head, it was in my body. Smiling!)

I was so sick but there was no cure nor illness to be confirmed. I had pains as if someone crashed my bones, red dots on my upper pallete and over my legs, mouth sores etc etc.

Until Dr. Pamela Mangat at Royal Free who took me on as a last minute patient from another doctor who thought I was really mad (i am so glad he thought that:))

Here is what Dr. Mangat did: Started me with 400mg hydroxychloroquine (then known/called as plaquinil) to see if I would respond well to this treatment. She did not diagnosed me but started me on a medication FIRST.I am grateful for this decision.

Lupus patients are deficient of vitamin D. Almost rule of thumb. Also gave me vitamin D injections until I had enough to reserve for a healthy levels.

To this day, I take this medication and readjusted my life generally.. I learned to sleep very early, sometimes 7.00pm, I work less, only do activity per week, ie local coffee or supermarket. Ahh I also leaned to say 'No' as well as manage my energy as if it is tank of petrol which I fill in everyday, leave some spare for emergencies and refuel as early as possible end of the day. I was about 30 when it all got out of hand . My daughter joined my journey about 6 years back. She was 17 years old and started sleeping about 20 hours a day. I knew why. So I used the same strategy with her.

Hope you get better and a diagnosis first...

With love,

Lxx