I've been having symptoms for the best part of two years, it initially started off as memory loss, fatigue, numbness and tingling in hands/feet and legs and then I began to develop more and more symptoms. Initially I was told it was all due to a Vitamin B12 deficiency but after having an initial loading dose of B12 and top up injections regularly I didn't feel any better.
Along with the symptoms I already had I started to develop horrendous pains in my abdomen and ended up in hospital and at the Dr's office several times before anybody took me seriously. I was referred for an internal scan but nothing was found. It was suspected at the time that I had a cyst on my ovaries that had ruptured but I wasn't convinced.
Fast forward a few months of recurring UTI's, constant cold's/flu symptoms, general feeling of being unwell , chest pain, swelling of fingers/knees and severe joint and muscle pains I finally decided enough was enough, I felt so run down like I just could no longer cope with the pain and tiredness, I went to my GP who by that point was sick of the sight of me and gave her a list of every symptom I was having or had and a list of my full family history. Finally she agreed to do some testing.
It took around 2 months before I heard anything back from my Dr, I had by this point assumed that everything had come back normal but that wasn't the case. I had abnormal results with significantly elevated Anti B2 GP1 and IGg. I was told to wait 3 months and then re-test my bloods. which I did.
Again, the Dr's took ages to get the results and I had to phone them consistently to see if they had been checked by anybody. At this point I made an appointment with the GP who told me that my results had came back positive again and that my Antiphosoholipid antibodies were more than 10X what they should be.
I saw two GPs who both told me that there were 99% sure I had SLE and I was referred to Rhuematology.
I had to wait almost 3 months for the appointment and it finally came around yesterday. My Rhuemy discussed my family and medical history at length and suggested that she thinks that at the moment I have Undifferentiated Connective Tissue Disease with Antiphospholipid Antibodies. She then preformed a physical exam and found that I have Carotid Bruits, she has referred me for Lung,Heart,Neck and Liver Scans, Chest X-Ray, MRI, CT scan and a kidney biopsy but I'm not totally clear on why all of these tests are needed and what she might be looking for?
I'm 19 years old and this is all very overwhelming at the moment, I don't feel like I really understand whats going on and I'm a bit confused about it, I'd really appreciate any advice anyone could give to me.
Thank you.
Written by
Hnewman2
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I am not diagnosed with anything yet, still waiting to see the rheumatologist, but from what I have gleaned from other members and Dr Google the tests will be to see if there is any organ involvement to aid a diagnosis of lupus - see lupusuk.org.uk/diagnosis/. Other people on here are far more knowledgeable than I am and will probably explain it all to you fully having been there, done that I have found this website:
very helpful in explaining the various blood tests you may have - someone on here recommended it
Hopefully you will soon get a diagnosis and appropriate treatment. My issues started when I was 18 and I found it hard to get my friends to understand why I couldn't go pubbing and clubbing anymore. It is overwhelming at that age to become chronically unwell but I think you have done amazingly well to get your GP to take you seriously, order the appropriate tests and refer you!
Yes they will be checking to see if you have lupus in your organs , lupus can attack any organ of the body , the kidneys are the most common organ affected which is why they will do a kidney biopsy but other organs like heart , lung , brain etc can also be affected . Just because they are doing these test doesn't mean they will come back positive so don't make yourself more ill worrying they will just want to rule things out so that they can get a proper diagnosis and put you on the right medication. Let us know how you get on and take care .
Thank you so much for your response, It's already been a long journey but I know there's a long way to go! I will definitely have a look into those sites you recommended, I want to ensure I can learn as much as possible and try to understand whats going on in my body.
👋👋👋👋Hello there Hnewman: I think you're doing a really amazing job of coping and understanding all this. You're being hit by A LOT of info all at once. This can only be really hard to process....especially while you're working hard as your own healthcare advocate and coordinator. We all know what this is like. Am so glad you've found this wonderful forum and have got these great replies
Clearly your consultants are alert to the nature of your version of immune dysfunction & connective tissue disorder. All this imaging and tests will help them understand your individual case across the board. The diagnostic & treatment process needs to start with "baseline" multisystem tests & imaging so that your response to treatment can be monitored against your condition before hand. Hope this makes sense.
My rheumatology lupus & vasculitis clinic has a young patients group...have you had a chance to see whether your clinic has something like this? Also, have you checked out your local Lupus UK support group? Some groups hold coffee mornings on a regular basis...might be helpful?
Am giving you a big gentle hug & a big pat on the back. My lupus was infant onset...and here I am at 63 with combined therapy treatment plans helping me lots. I've had a fulfilling career and am in a very happy marriage. So take this one step at a time...you'll get the hang of it. And meanwhile, we're here for you
PS I have a feeling you do understand this, but I'll just add it anyway 😉:
the diagnostic process often takes time...we start out with provisonal diagnoses which get firmed up over time while we're monitored as we respond to treatment. There are quite a few here on this forum without actual lupus diagnosis who are totally at home because their versions of immune dysfunction & connective tissue disorder are similar enough to lupus to mean we really understand one another....sometimes, but not always, such patients are considered lupus-like or lupus-spectrum
Thank you so much for your response, It's really informative and very encouraging.
It does make sense that they are checking everything over to see if any damage has been done and I feel very lucky to have a good Rhuematologist that is ensuring all the tests are done. I don't have a very strong support network so finding a forum like this one in which others that can understand what im going through and have had their own experiences of Autoimmune disease and can relate to how im feeling is already really useful and helpful for me.
I'm sure my Dr explained things well but as you said, its just an information overload and difficult to take it all in.
Don't worry it's all normal for lots of tests. There are so many illnesses that are similar they just want to be sure that u are getting the right treatment. I won't lie it does take a lot of time and some people don't get properly diagnosed for months/years but in the mean time make sure u are getting meds to help ur symptoms. I'm afraid in this day n age u will have to be strong and fight for a diagnosis as quick as they can e.g. Reminding them of symptoms , reading up n maybe asking to be referred to a certain consultant which is ur right but any more advice ask me on here. May seem very daunting but I can get swallowed up in nhs as so many people need help. Also cit advice really good for help with this and I think some people forget that they can go to them too Remember I'm here good luck
Thank you for taking the time to respond! I must say what I'm finding difficult at the moment is how some Drs make you feel like you're a total time waster I guess it's just what happens when you have an invisible illness, I'm just hoping that now I have a diagnosis - sort of.. that I will actually be listened to.
I'm next seeing my GP on 3rd Jan I'm going to make sure to ask about meds because I haven't been given anything as of yet.
Welcome to the forum. It's great to see that you've already received some excellent comments and support from our other members.
At this point it is likely that you will undergo a large battery of tests and investigations to see what level of involvement you have and what treatment may be best suited for you. Do you have a follow-up appointment booked yet?
As Barnclown has suggested, it may be good to connect with a local support group. What area do you live in? I'd be happy to provide you with more information.
If you need more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...
Unfortunately we don't currently have any active groups that meet in West London or the Thames Valley areas. I believe your nearest group may be our South London Lupus Group which meets every couple of months at St George's Hospital in Tooting. For more information about this group, please email southlondonlupusuk@live.co.uk
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I have found this website:
Anyone else with UCTD or Lupus have tooth loss?
UCTD
Lupus anticoagulant antibody
Antiphospholipid syndrome
The Vanishing Diagnosis - UCTD?
