A few words of advice/encouragement please. Possible Lupus/MCTD/vasculitis.

[Minnskimoo]

Hello everyone.

I would appreciate some input regarding my questionable (still between rheumatologist/dermatologist) diagnosis of Lupus/ MCTD/Vasculitis.

Apologies in advance for the lengthy post. 😌

After 5 years of numerous visits to my GP, with an abundance of common ailments of which to name a few have been- extreme fatigue, mouth ulcers, (varying in size and severity) pins and needles in arms/hands, gastro-related problems, upper/lower respiratory tract infections, (at least every 6 weeks) one bout of pneumonia, shortness of breath, reactions to certain food, unable to remove self from a sitting position without being in agony. A visit to ER after a suspected TIA (mini-stroke)- MRI scan done - no sign of TIA, but white matter lesions mentioned at the time of consultation!!! Request by my dentist for B12 tests. ( My poor teeth and sore, swollen tongue) Opticians visit because my eyes began to feel blurry (Corneal erosion) There are many, many more I could add. Eventually, after numerous blood tests and nothing showing that required immediate attention, just the usual- Bonjela, antibiotics, "do some exercise' Omeprazole, Ventolin, my GP suggested I go to counselling for health anxiety and depression and offered me anti-depressants. I must add yes, I was anxious and I wasn't sure if I had become anxious because 'something was underlying'.

After all the above, come September of last year, I began to get a red, angry looking rash around my eyelids and awful ulcers at the same time. My feet were begining to feel numb in the toe area. They still do, and they feel like I have chilblains when sitting in a warm bath! My legs are covered in awful, itchy, burning spots that turn into hideous looking purple bruises when healed up. I was informed - "they look like bug bites!" I might add, I do not have the photosensitivity rash across my face and have never experienced it yet. That said, I like to see the sunshine but never feel quite right when out in it. I feel dizzy and disorientated. Always been like this since I was a child. (Anxious child too perhaps? ) 😬

I began to keep a photo' diary and on my next GP visit presented my telephone with the photographs to a locum GP- She took one look and immediately referred me to a rheumatologist. After discussion, photographic evidence, blood tests (no positive anti-body test) I was informed that it appears I am at the begining of some autoimmune activity (inflammation) and I would probably be given 'Hydroxychloroquine' and was then dutifully sent to a dermatologist. I am now still waiting for a fresh batch of spots to make an appearance so he is able to take a skin biopsy. Also in need of skin-antibody blood test.

I feel very overwhelmed, tired by everything and worried that, if my blood tests are negative, why am I the way I am? And, why am I going to be prescribed Hydroxychloroquine when there is apparently nothing to show in my bloods? Is it the fact that some autoimmune diseases are not always reliably diagnosed by blood tests alone? Is it possible to have a combination of lupus/ MCTD/vasculitis? Not really quite sure about anything at the moment. I obviously should have asked this at the consultation but had a lengthy 'shopping list' of symptoms and limited time. 🙆

And, if you managed to reach the end of this - 'thank you very much' for staying with it.

I truly appreciate it👍🏻xx

[PMRpro]

Diagnosing a/i disease is a very convoluted task - not least because patients often show signs of all sorts but nothing 100% suggestive of one in particular. I'm no expert here - but hydroxychloroquine does seem to be a common starting place and if it helps that is a positive. If it doesn't, they try something else. And really, with a lot of a/i diseases they can only treat the symptoms and hope to make life better.

I did read it all - and I'm sure the lovely people on this forum will have far better replies than mine - but I wanted you to know you had been heard.

[Minnskimoo in reply to PMRpro]

Thank you PMRpro for your response. 👍🏻I appreciate you taking the time to read through it.

It makes one feel less alone and more able to discuss illness without fear of being told to 'cheer up' and being told to 'put a smile on your face' 'it can't be all that bad' 'I think you are imagining it' and so it goes!

S x

[EOLHPC]

Hello Minns...I'm so glad you've found our wonderful forum. I agree with PMRpro, and I am totally relating to everything in your post...it dismays me that so many of us find diagnosis such a bewildering, scary ordeal....mainly because many medics seem to be affected by a sort of ingrained reluctance to even begin to discuss immune dysfunction & connective tissue disorders with patients...let alone to actually launch appropriate in depth investigations

So you are definitely not alone...for instance this link takes you to a popular recent discussion here on this subject....I'll add another link as a PS. I send you these links because they both contain excellent "legit" links to really helpful & "accessible" (i.e. Understandable...not indecipherable Dr-Speak" 😉) papers by officially recognised health system experts in this field, because answers to your questions are in these papers AND because both discussions are full of really great contributions by fellow forum friends who have been, and, sometimes, still are going through the early stages of the diagnostic & treatment process...as you are now:

healthunlocked.com/lupusuk/...

Courage....hang on in there...you are "talking the talk & walking the walk"! I think you are doing a grrrreat job of contributing exactly the right effort to the diagnostic process 👍👍👍👍...I wish I'd been as clued up re what I needed to contribute towards my diagnosis back when my signs & symptoms meant my medics began to realise immune dysfunction & connective tissue disorder was underlying my lifetime of progressive multisystem debilitation + unmistakable signs & symptoms

I hope something in my reply helps

Please keep us posted

🍀🍀🍀🍀 coco

PS here is that other link 🤗

healthunlocked.com/lupusuk/...

[Minnskimoo]

Thank you so much Coco for sending me the two links . 👍🏻Extremely helpful indeed. 😉

Molly's Fund page is very informative and easy to understand. And, reading through, as daunting as it is being told you have/might have a chronic illness, the words of advice at the end is something I am going to 'bottle' and then re-open when I begin to let things bother me! Whatever I have or eventually am told I have, I will not let it define me! I need to remember that and push ???? into a less important place. Sad as it is, I felt some relief when the words "Lupus/MCTD/Vasculitis" were said to me. Sounds crazy doesnt it? Then after the relief- slight panic and anguish. I guess that is a normal response?

I am feeling a little more upbeat today😊. I appreciate there are many people, dealing with far worse. It is good to have some help and reassurance from anyone with experience of the same or, similar symptoms. A huge benefit.

I thank you again, and very much appreciate the time you have taken to reply. 💐

S.👩🏼‍🏫x

[PMRpro in reply to Minnskimoo]

I'm not sure they were suggesting you had them all - but that that you had elements that suggest lupus or vasculitis and perhaps that MCTD might be the piggy in the middle that included them both. Which at least indicates a broadness of mind that means they will keep digging.

I think it is a perfectly normal response to hear any diagnosis - because 1) it affirms to you that they also think there is something real present that needs to be dealt with and 2) they have at least the outline of a plan in mind for management in the longer term.

They aren't just going to say "it's all in your head" which is something far too many people experience. BUT, they may still have to admit they can't offer a perfect answer. Yet.

[Minnskimoo in reply to PMRpro]

Hi PMRpro.

I can see it might read as if I have all three! I appreciate that is not the case. I understand I might have symptoms that 'overlap' And my being relieved at hearing the possibilities was indeed, due to the fact that my GP thought I was constantly "over anxious"

I am educating myself through this site about the complexities of autoimmune disease. HU seems a good place to begin. Lots of links and varied experiences. Very useful. Very helpful.

Thank you so much and for keeping me 'grounded' with sound advice. I can appreciate I might not get the answers I was hoping for, but at least for now, I am being listened to and receiving some help.

A great response.

Cheers

S x

[Treetop33 in reply to Minnskimoo]

You've had some good responses and I'm sure it's really difficult when the blood tests aren't showing (I think in these cases doctors use medications in the diagnostic process).

I've been reading this book on MCAS called Never Bet Against Occam by Lawrence B Afrin, which may be of interest, in order to help me unravel the mysteries of autoimmune and allergic diseases (I am no doctor though...).

[Minnskimoo in reply to Treetop33]

Thank you Treetop for the heads up re the book. Sounds interesting. I will feedback when read!

Yes, some helpful information provided on this excellent site.

.....and not being a dr is fine. I'll not hold it against you! 👍🏻😉

[EOLHPC in reply to Minnskimoo]

👏👏👏👏👍👍👍👍🍀😘🍀😘

[Paul_Howard Partner LUPUS UK]

Hi Minnskimoo ,

I'm glad to see that you have had some very helpful and supportive responses from PMRpro and EOLHPC already.

As they have mentioned, diagnosing autoimmune/connective tissue diseases can be very difficult because they present with varied, fluctuating symptoms that can overlap with and/or mimic other conditions. Blood test results can fluctuate or in some rare cases not be positive at all.

Hydroxychloroquine is often prescribed for lupus other suspected connective tissue disorders. It is the safest treatment available and can help with a number of different symptoms.

Good luck with your further investigations. Please keep us updated with how you are getting on.

If you need more information about lupus and how it is diagnosed, you can request or download one of our free packs at lupusuk.org.uk/request-info...

[Minnskimoo in reply to Paul_Howard]

Many thanks for your welcome. Gratefully received!

The response has been really good and has made me realise how helpful being part of a forum like this can be!

I will be posting again as soon as I have more details from the dermatologist re skin antibody test and skin biopsy.

Cheers.

[misty14]

Himinnskimoo

So sorry to read of your symptoms and diagnosis difficulties!. It can be a long road but I'm sure you will get there!. It's good your GP is referring you to a Rheumatologist. I just could add that there's a particular antibody that's found in bloods for people with MCTD!. According to Graham Hughes 's book Talking about lupus. It's the anti - RNP antibody!. When you see your Rheumy he will do these specialist tests to include this to help make his diagnosis. You may be like me and get a diagnosis of UCTD or undifferentiated connective tissue disease. This includes Vasculitis, schleroderma and lupus under one umbrella!. It means our bodies can't make up its mind what to be as we have symptoms of many CTD's. If so you will need to be regularly checked as these illnesses can change quickly. Good luck and keep us posted how you get on. X

[Minnskimoo]

Thank you Misty14 for taking the time to read my post. 👍🏻

I am begining to understand how difficult it is to diagnose autoimmune disease! It seems everyone's case shares a little (or quite a lot) of the many symptoms these chronic illnesses display. For me, they appear to move around in a cycle. Not the 'monthly cycle' I might add! That, has definitely been and gone -many moons ago! 😬 (Total hysterectomy for chronic endometriosis.) I swear I have never been 'quite right' since I had that done! And, until my symptoms became more severe and recur more frequently did I realise these were not really, 'just a simple headache' or a case of ' overly dry eyes and mouth' ...... and so on and so forth! Hence, the photographic evidence of the outward signs was extremely helpful, although - alarming, very painful , irritating and unsightly!

And thank you for the MCTD antibody information. There is definitely lots to learn!

Will keep you posted.

S x💐

[PMRpro in reply to Minnskimoo]

A few years ago it was suggested that the average length of time to diagnosis in autoimmune disease was 10 years! It starts with the vagueness of many symptoms and finishes with the difficulty of deciding what to label it once you have decided it is autoimmune in origin. It isn't just doctors not taking us seriously though that DOES have a role to play.

[Minnskimoo]

It does indeed PMPro!

And I can relate to the 10yr diagnosis too! I had 7 years of chronic pain and problems before it was discovered I had severe endometriosis. Prior to that, I had a consultation with an immunologist, as my GP first mentioned autoimmune disease then. However, nothing was showing in my bloods and the consultant said quite openly to me that I "had a case of hypochondriasis' My records still contain this information and I still find it upsetting to this day! I knew my body wasn't functioning as it should have been, so I bit the bullet and arranged for a private consultation. Yes, I had a severe case of endometriosis, both my ovaries the size of small grapefruits and to quote the consultant - "you are in rather a mess, and the only way to relieve it would be - a total hysterectomy" Within the week I was operated on and along with my reproductive organs as much of the surrounding tissue removed as possible.

Needless to say It seems like a case of deja vu with regards to diagnosis.

It's a job!

And thanks for msg 👍🏻

S

[PMRpro in reply to Minnskimoo]

My daughter, at uni and just 19, was told to "go and have a baby" to deal with HER endometriosis. Somehow I missed that at the time - or a complaint would have been made! Hope you at least told the guy his mistake...

[Minnskimoo in reply to PMRpro]

Such sound advice don't you think? Or perhaps, NOT !😡