View Full Version : Hi I'm Don and just had my test results back....

05-16-2013, 08:44 AM
Hi there, my first post here and I'm not sure where to start,
I'm 43, based in the UK, married with 2 great kids.
I've had rashes (mainly on upper legs and upper arms and some on face) and joint pain plus problems with tiredness and lack of energy on and off for years. Over the last 5 years or so I have also developed a lot of new allergic reactions to things such as plants, hay fever, allergic rhinitis etc..
but all sort of liveable and not affecting me too much - most of it I was putting down to getting older. I have also had very high cholesterol which was diagnosed about 5 years ago which does not fit with my diet and weight/physique.
I had some real problems with being always blocked up in the nose and sinuses for years which had been put down to allergies and no medication cleared it up.
Then I started snoring badly so my wife made me go to the Dr about that as it looked like I ought to have something done to my sinus's plus that my tiredness could be coming from sleep apnoea and so was referred to hospital ENT where after consultation I was booked in and had a Septoplasty and Turbinate reduction procedure (not a pleasant experience I can tell you). When the operation was carried out the surgeon was concerned as she noticed that I had thinning and a perforation of the septum and said if I didn't have any improvement in 3 months then some more tests might need to be done.
I went back after the 3 months and of course no change - still blocked up and so I was sent for a number of blood tests.
Things were beginning to join together for me and so I took this point to make sure my consultant at the hospital was aware that my mother has SLE and she said that is interesting as that is one of the things that we will be testing for but she also suspected potential vasculitis.
The tests came back yesterday and most were negative apart from I tested positive for ANA (incl screen test showing speckled) and RF. So I have not had the 'official' diagnosis but will be seeing my GP next week who will probably refer me on to a specialist.
I suspect that it will take some time and too-ing and fro-ing before I get a diagnosis but I have spent my whole life in the shadow of my mothers SLE as she was diagnosed after a PE when giving birth to me.
Any thoughts, ideas, input etc would be much appreciated plus if any of you UK based members can recommend an good consultant then that would be appreciated.


05-16-2013, 09:14 AM
Hi Don;
Welcome to our family! I am sorry that your surgery did not give you the relief that you hoped for. Many of the symptoms that you describe are familiar to those of us with auto-immune diseases. Many of us suffer from more than one overlapping illness. A positive ANA and positive RF factor does not necessarily mean Lupus. However, they are highly indicative of some sort of auto-immune issue occurring. You are right, the diagnostic process can be quite lengthy as it is really a process of elimination until the true source of your issues are found. Sometimes, we never get a definitive answer and are told that we have MCTD (Mixed Connective Tissue Disease combines features of scleroderma (https://en.wikipedia.org/wiki/Scleroderma), myositis (https://en.wikipedia.org/wiki/Myositis), systemic lupus erythematosus (https://en.wikipedia.org/wiki/Systemic_lupus_erythematosus), and rheumatoid arthritis (https://en.wikipedia.org/wiki/Rheumatoid_arthritis) (https://en.wikipedia.org/wiki/Mixed_connective_tissue_disease#cite_note-6). Some doctors also include polymyositis (https://en.wikipedia.org/wiki/Polymyositis), dermatomyositis (https://en.wikipedia.org/wiki/Dermatomyositis), and inclusion body myositis (https://en.wikipedia.org/wiki/Inclusion_body_myositis) (https://en.wikipedia.org/wiki/Mixed_connective_tissue_disease#cite_note-urlMixed_Connective_Tissue_Disease_.28MCTD.29:_Aut oimmune_Disorders_of_Connective_Tissue:_Merck_Manu al_Home_Health_Handbook-7) and, as such, making MCTD and overlap syndrome.
Another diagnoses that we often receive in lieu of a firm Lupus diagnosis is UCTD (Undifferentiated connective tissue disease). In this case, many people who have features of connective tissue disease, however, they do not have enough symptoms of any one disease in particular that would fulfill the diagnostic criteria established for any one disease. In such circumstances, they are often considered to have "undifferentiated" connective tissue disease. Over time, people with UCTD may evolve into one of the more specific connective tissue diseases, such as lupus, Sjögren's or scleroderma.
There is a genetic predisposition for connective tissue diseases and/or auto-immune diseases. So, it is good that you explained the fact that your mother suffered from Lupus.
I hope that I've been helpful.
Again...Welcome to our family
Peace and Blessings

05-17-2013, 07:08 AM
Hi Saysusie,

Thank you for the reply and kind words. I just hope that I can get somewhere quick enough with the medical profession so that I feel better soon. I also realise that I am quite a rare breed being male - there doesn't seem to be many on the forum and the men's section doesn't seem to have a lot of life in it either.
I have my GP appointment on Wednesday and will concentrate on explaining my symptoms and making sure that I tell all rather than being a usual bloke and not saying anything.
I spoke to my mother last night and instead of it being a shock for her she said it was a relief that I was being checked out properly as she had seen signs and symptoms in me on and off for quite some time and had told me before to make sure I get things checkout fully just in case. It is good to have her onside as she has had almost every drug and treatment tested on her for the last 40 years.
Thanks again,

05-18-2013, 06:39 AM
I also realise that I am quite a rare breed being male - there doesn't seem to be many on the forum and the men's section doesn't seem to have a lot of life in it either.

Thanks again,

We're not in the men's section because we're all over in Lauri's Lounge flirting with the women...

Welcome to WHL!

05-18-2013, 12:02 PM
Thanks Rob, I know where to hang out now... LL it is...

05-18-2013, 11:09 PM
Hi Don,I am also new to the site.I am in the UK I was diagnosed with SLE 17 years ago.
My rheumatologist is Dr Oreilly at the West Suffolk Hospital.I have been seeing him for many years now since my old one left,he is very good and the main thing he is always there for me and never let me down.