Some input as to how to move forward would be most welcome please. 😏
I am just about at the end of my tether with GP’s and consultants.
After many years of trolling backwards and forwards to various medics regarding awful problems with mouth, skin , strange sensations in hands, feet and face and many more. I am told that I do not fulfil a specific criteria for Lupus, MCTD or Vasculitis or, anything for that matter. In spite of plenty of photographic evidence (body like a war zone) However, sadly, the problems are still cropping up and they appear to follow a pattern of what I would think people on this forum consider to be a ‘flare’ of symptoms. I have had a nasty chest infection and that in turn has aggravated my asthma. I have been off work 9 weeks. I was prescribed antibiotics and steroids and I am now on my second round as I am still coughing and wheezing and experiencing the same mouth, skin problems, pins and needles and numbness in face. Not only that, but I am having problems around my neck area. Left with a hoarse voice. A feeling that any pressure in the slightest near windpipe makes me gag and feel suffocated!
GP has said I am ‘anxious, and that it is understandable after being quite unwell’!
I recall feeling like this when my Vitamin D level was 12 and wondered if that could be causing some of the problems again? My B12, I note has gone from 775 to 345 over the last few years. No one seems to think it has any bearing. And, my thyroid levels are always ‘satisfactory as opposed to ‘normal’. I feel I am stuck between a rock and a hard place. Now questioning sanity??!!
I would like to post photographs (not pleasant to look at might I add!) to hear thoughts (I totally appreciate that the lovely people on here, although extremely knowledgeable, are not Drs) as to wether the type of things I am experiencing are just to be accepted as ‘the norm’. And, am I over reacting?
Thank you.
Sue. x
Written by
Minnskimoo
To view profiles and participate in discussions please or .
Hi Sue. You are not overreacting of course. The world is full of people in your shoes, certainly plenty in the UK. I take it that the doctors you are dealing with are GPs rather than specialists such as rheumatologists, neurologists or dermatologists? I also take it you’ve had the full battery of blood tests for all the forms of autoimmunity that GPs can test for now?
If it’s an affirmative for these questions then your next step is to become the expert patient and insist on having copies of all your blood results. The likelihood is that on your notes you have been classed as a MUS patient (medically unexplained symptoms). So the only way you will make progress now is to get hold of your records and blood test results and learn as much as you can about seronegative autoimmune diseases - specifically all those of the connective tissue.
All I can tell you is that my own journey has been more fortunate than yours in that I’ve always been believed re autoimmunity. Sometimes I’ve had a few doctors add in words like functional or Fibromyalgia, IBS or health related- anxiety /depression. I’ve tried my best to get all removed and I think I’ve succeeded. But still, despite certain clinical signs that I have something very untoward occurring and existing Hypothyroidism and misdiagnosed RA - I’ve hit some big brick walls during this journey.
Finally last year my ANA turned clear positive, after three relocations, and a new hospital took a lip biopsy and bingo -they found that I have Sjögren’s.
Despite a confirmed diagnosis I still hit brick walls - mainly due to being under many specialists, none of whom will take the lead and form a plan for the widespread numbness that is acknowledged as Sjögren’s related small fibre neuropathy. Here is a link that might help and a final comment that many with Sjögren’s only finally get diagnosed in their 50s and 60s having been previously misdiagnosed with ME, Fibromyalgia, RA, Lupus and even MS. Getting out of the MUS category will take a lot of perseverance and reading up/ research and some battles with GP receptionists and GPs in all likelihood. But this is the only way to go in my opinion.
Remember - if you don’t feel your symptoms are part of a somatisation disorder then you’re almost certainly right!
Here is a link which might help with getting to the bottom of numbness (which I have in my face and everywhere too). By attaching it I’m not saying you have Sjögren’s of course - Lupus and all the others often go similarly disregarded. But being extra well informed is essential if you want to get out of your MUS soup!
Thank you so much for your comprehensive reply. I truly appreciate the time you have taken.
It seems you have most certainly had your work cut out re diagnosis.
With regards to consultation - I was referred to a rheumatologist in the Summer, last year. The GP I saw at the time was aghast at the photographs and the amount of times I had been to the surgery without any real concern being shown. Her initial comment was “Goodness me, this looks to me like some form of type 111 hypersensitivity!” A letter was sent without hesitation to see a rheumatologist, who then organised various blood tests and a skin biopsy.
The rheumatologists initial thoughts were perhaps Lupus or MCTD or Vasculitis. He actually said that, from listening to my symptoms and looking at the diary of photographs he was of the mind that Hydroxychlorquine would perhaps be the first line of fire. This however, completely changed after the skin biopsy. The diagnosis from the dermatologist was - a mild form of venous insufficiency-or stasis dermatitis. Strangely enough, the dermatologist said to me at my follow up appointment that the Hydroxy was perhaps a good idea and he would state this in a letter to the rheumatologist. The rheumatologist thought otherwise. To cut a long story a little shorter he was of the mind I do not have RA, Lupus, MCTD or Vasculitis. My blood tests must have confirmed this.?? He did say before I left that I should be very thankful-but, should I encounter any more problems not to hesitate to contact him!
I do have access to my medical records but....not everything is accessible. There are blood test results and general comments.
Prior to all of this and with reference to somatisation disorder I had chronic endometriosis, undiagnosed for 7 years. During that time of trying to get a clear diagnosis I was deemed ‘anxious’ and this was causing most of my unexplained symptoms. I bit the bullet, went private and within one week of having a laparoscopy I was told my reproductive organs were a complete mess. Total abdominal hysterectomy followed. I knew all all along my body wasn’t functioning as it should. And so, here I am in a similar situation feeling frustrated and not very well at all.
Thank you for the link too.☺️It is very informative. And, I can most certainly identify with some of the symptoms listed, especially the facial pain-even my tongue hurts at the back. Like a very dull ache. Have to place a heat pack on my face to try and relieve it. My feet feel as if they have chilblains when soaking in a warm bath. I could ramble on forever but I will perhaps sign off here.
Reading your post has made me determined to continue and not sit back and accept that this is all down to anxiety. I do admit the symptoms create some anxiety at times. I think that it is very understandable to be honest and I defy the GP disagree with that fact.
I am very grateful to you, Twitchytoes. It is helpful to hear from a seasoned HU contributor. We all need one in our complicated lives. x
Hey I’m delighted to be of use to you. Had that doctor said to me to be glad I would have replied that there’s nothing worse than the uncertainty of suffering undiagnosed. I got to the point with my neuro symptoms that a diagnosis of MS would have been a welcome relief. I mean either we are sufficiently nuts and fanciful to be capable of dreaming up this stuff - which isn’t to be celebrated - or we are still undiagnosed while horrible things are going on externally or internally of both.
How on earth can we be expected to be thankful for such a state of affairs?
A friend had the same problem as you with undiagnosed endometriosis. After years of being told it was all in her head a hysterectomy led to some kind of infection which was ignored by her GP until it reached the point where she had to be catheterised. Her husband experimented with collecting and measuring her pee from her other kidney and they found and were able to demonstrate to another GP using a spreadsheet - that one of her kidneys had become entirely defunct! Honest to goodness I could never fully trust any doctor 100% to get it right for me now.
Even in my case I’ve had pancreatitis and sepsis dismissed as cholecystitis and anxiety respectively and had a follicular rash on legs misdiagnosed by a dermatology professor as Scurvy?!!
I agree with PMRPro that it would be well worth contacting Vasculitis UK helpline with the skin involvement you are describing. It took 3 consultant rheumatologists and2 neurologists before I gotcha my Sjögren’s definitively diagnosed as my primary disease! X
Hello I have finally made progress with my symptoms and got some treatment after my fourth rheumatologist ordered a lot of tests and scans, finding positive ANA, ANCA,MPO, raised CRP. Enlarged lymph nodes, and damaged salivary glands.I had a liver auto immune condition diagnosed around 7 years ago after first visit to rheumatologist.So it can be very hard to get answers I can not express how grateful I am to this final rheumatologist who ordered so many tests and scans to get this far but it shouldn't have taken so many doctors or so long!!So if your not happy keep going until someone listens.My doctor said some of my tests had been negative when done in an automated way by lab, but he didn't believe it so asked them to do by hand and then they were positive so they are certainly not 100%.It took 3 year's to get treatment, this time and 7 overall as I didn't see rheumatologist for 4 years after liver condition was found ,it can be a long hard road.Good luck don't give up.Jane
Sorry to hear you have also been through the mill to get a diagnosis but relief that you have finally made progress and getting help with treatment.
Four rheumatologists? Seven years? Goodness me! I can truly appreciate that I am obviously not going to be sorted anytime soon. And very interesting to read that there are automated ways to test blood and, for a more accurate result ones done by hand...I had no idea! Persistence is obviously key. I will not give up.
I do hope your treatment helps to make your days more bearable.
Thank you.I hope you get answers much more quickly.I think finding the right doctors the key.With regards to the antibody testing the doctor said the automated process looks for most common antibodies and the one I had was an unusual ANA but it shows the limitations of the automaled test and the importance of a rheumatologist who listens.Jane
Please don’t ever think it’s all in your mind just because they haven’t managed to find out what’s wrong. So many of us have been in a similar position and like previous responses say, it’s a case of learning as much as you can, getting copies of your results and often helping the doctors put the pieces of the diagnostic puzzle together.
If you can afford to go privately to a rheumatologist that might speed things up? I did that and I only had to pay for the first consultation (just over £100 I think but a while ago!) as the blood tests were nearly £1000 and I looked so horrified he offered to put me on his NHS list straight away so got the testing on the NHS and further appointments but he started treatment straight away.
It might not be one of these diseases you have but you know you have something wrong that needs diagnosis and treatment so unfortunately you have to keep pushing for answers.
After repeated visits and no comeback you begin to ask yourself - is it anxiety?
I know I am not in the best of health for one reason or another - I have never had a chest infection for 9 weeks before (I do get them but have recovered by week 2 normally) so something is amiss with my immune system.
And you are right-it might not be any of those diseases - but I do know something isn’t quite right.
Welcome Sue and, as you can see, there's a treasure trove of support and advice here. Nothing from me - the others have covered much more than I know - but a wee welcome anyway x
I have accessed HU before but I dipped out for a while after hearing above diagnosis. However, because of ongoing symptoms not leaving anytime soon I felt I needed some reassurance as to wether I was losing the plot- or to continue investigating further. Last year was a miserable year. So, this year I need a new attitude and outlook to get back on track and address my health in a better way. More proactive and not accept anything without making sure we have covered everything possible. I appreciate that it is easier said than done ...but I am not giving up.
Bless you. I empathise with your current situation. Last winter I had very similar symptoms. I had to take antibiotics, back to back, four times! I had never had antibiotics repeatedly, in fact, hardly ever needed an antibiotic prior to becoming unwell.
Yes. We know our body! I knew something wasn't right. As everyone has told you, the journey to definitive diagnosis, is challenging! I was diagnosed Sjogrens syndrome ?lupus. (Already diagnosed thyroid problems 25 yr ago).
Until last winter, I had never experienced chilblains, ouch! Nor, sinus infections, or chest and ear infections. They all came together! Additionally, I had a chronic cough, night sweats, weak muscles, joint pain, skin eruptions and finally, a full body rash.
Anxiety is a key word many GP use these days, especially when they cannot diagnose, let alone find a cause!
Fortunately, I had a v good dermatologist, she recognised I had been over prescribed pain relief (prolapse discs and sciatica), and levothyroxine. There began my referral to rheumatologist, and fighting back for improving my health, and my healthcare givers!
After 28 yrs, I changed GP practice. I am willing to tell consultants if you cannot help, please say so, I won't waste my time, or yours. I manage so much better knowing I have some control.
HU friends have helped me enormously. Twitchytoes offers great support and knowledge because she has been there.... but most importantly, she cares.
BSSA (Sjogrens association) is also a fabulous support as are lupus HU, and administrators here.
Get through this flare. When you pick up, you will have more energy to get to the bottom of the illness and manage better.
Your reply, as with others is fully appreciated. x
Yes, always a struggle to concentrate on Dr's appointments and trying to get to the bottom of everything when you are under the weather and barely managing to get through the day.
I have now reached the stage where I do not care how many times I have to visit the surgery to find someone that might be remotely interested. I feel fobbed off for most of my visits and sent happily on my way with repeat prescription and told to "pop back if no improvement". I am surprised the surgery haven't installed a chair for me with my name inscribed on the backrest! Especially this year.
I will perhaps use your lines for my next visit and see what transpires!
Back to the lead Asthma Nurse today to discuss 'air hunger' and why, even with steroids and antibiotics I am unable to function at a reasonable level.
Forums such as HU are a godsend. I scroll through many times to read how others cope. The encouragement and advice given is fantastic.
Thank you. Yes, the support HU is so good. We never feel alone knowing we can pop on here, good or bad days.
So, I had my first, ever, endocrinologist appointment today! Only waited 25 yrs! Lol.. old GP was one of the best gatekeepers around, refusing referrals....
To be fair, I managed very well until my health deteriorated 3 yrs ago. Then, (as I wrote in the post, once I learned the art of fighting our corner, as a patient), I persevered until my latest rheumatologist did an endo referral.
The most fabulous news! Endocrinologist spent nearly an hour with me! He went through some of my previous test results I had taken in. He really understood how hard I have been fighting to reclaim better health. In fact, I'm having a blood test tomorrow, a change of meds, (for now), I have been given a further 2 blood forms to follow up.
And, wait for it, he suggested I phone his Secretary to tell her how I'm doing!!
And, yes, I said it to him, "if you cannot help me, tell me, ..... I will walk away"...
Today, this Consultant, has given me more hope in my belief that, I can, and I will, get better, than I have felt in 3 years. He has helped me regain some faith in the NHS too.
Good luck, sit on your named chair, with dignity. Think to yourself, how embarrassing for the doctor, that they still haven't managed to find cause and solution, so I've had to return!
We all know that chair, but why should we feel embarrassed? In private health care, we wouldn't return to a provider that doesn't help. Well, NHS doesn't give us much choice. So, just persevere. X
What excellent news. I can sense the relief. (After all, 25 years isn’t that long- if you say it quickly! )😉
It is good to have your faith restored in the NHS. We all like to have moan about the negatives. It is human nature I suppose. But, it does sound promising and that can only be a good thing! A great start to your New Year - with improved health! 👏🏻
Yes, I will continue to sit on my chair with dignity and hopefully, and eventually, the chair will no longer be needed- by me at least! Or not as frequently. Perseverance has to be the way forward.
I shall look out for your posts re- the progress you are making.
According to The Lupus Encyclopedia, “A flare is when someone has either a worsening of lupus problems, or a problem that was under good control then comes back, or a new problem occurs that was not present before”.
Dryness of the mouth can cause many different problems including dryness of the passages that lead down to the oesophagus (the tube that leads to the stomach), as well as the trachea (windpipe) and vocal cords. Dryness in these areas can cause difficulty in swallowing, coughing and hoarseness.
The Lupus Encyclopedia provides general measures to help alleviate dryness of the mouth:
•Drink plenty of fluids, especially water, throughout the day
•Avoid dehydrating fluids such as alcohol and caffeine
•Avoid smoking
•Use gum and mints that contain xylitol throughout the day
•Eat soft, moist food if you have trouble swallowing
We published a factsheet on ‘LUPUS: The Mouth, Nose and Eyes’ which I hope you will find helpful: lupusuk.org.uk/wp-content/u...
It currently takes an average of seven years to diagnose lupus. We published a blog article called 'getting a diagnosis of lupus' which you can read here: lupusuk.org.uk/getting-diag...
Although you haven’t been diagnosed with lupus, you may like to chat with one of our LUPUS UK contacts over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at chanpreet@lupusuk.org.uk .
Lots of information for me to take in - and all extremely helpful! Good to educate myself with ways I can try to alleviate some of the unpleasant and sometimes worrying symptoms - which can and do limit your day to day living.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
How to get your doctor to take you seriously?
I am on fire!
It May or May not Be Lupus
I am not leaving this group...
Make-up coverage
