Confused Hypochondriac

[Identity75]

Hello all,

Can I trouble you for your thoughts?

A little back history. I am a 41 year old bloke who was diagnosed with Ulcerative Colitis and Primary Sclerosing Colangitis in 2003.

Recently my eyes went very yellow and long story short I've been told everything from cancer to possible liver transplant to autoimmune hepatitis.

I've just had a letter from my gastro which was just a copy of a letter sent to my GP. Anyway it states my ASA was 1:5120 with nuclear homogeneous staining pattern and IgG elevated at 29.1

Always trying to keep myself in the know I went to Dr Google. Lupus kept cropping up. And when I looked at some of the symptoms things started to sound familiar. I've been to the GP over joint pain in my hands, I've suffered from Raynaulds Syndrome In the past, I often get mouth ulcers, I have quite odd skin on my arms and neck, not a rash as such I've always called it my reptile skin.

Does any of this shout to any one as Lupus? Am I just being a hypochondriac?

Any thoughts would be appreciated.

The photo is of my forearm that pattern appears the length of my arms across the top of my hand and around my neck

Mark

[LuckyJC]

Not a doctor but from what I know lupus sounds entirely possible. It seems to appear with a whole host of other diseases including raynauds, and from what I understand it can cause virtually any kind of skin rash - not always the classic lupus rash. Has your GP been able to explain the joint pain etc? If not I'd be asking for a referral to a rheumatologist ASAP, especially with your ANA levels. Hope you get some answers soon x

[Hidden in reply to LuckyJC]

I agree that your GP should be referring you to a rheumatologist now. Only a rheumatologist could diagnose Lupus or other rheumatic diseases but with your high ANA and IgG and symptoms and other pre- existing AI diseases then I'd say you couldn't get less hypochondriac if you tried!

[Jackpen1]

Hi there! It sounds just like me! My eyes haven't turned yellow but that's because thankfully I have no kidney or liver involvement in my Lupus case yet. That being said, my mom ( where I got my Lupus from, if you believe it's genetic. If not just really bad luck on my family's part) died from kidney and liver failure. My family exudes autoimmune disease

My cousin, our first family case, died when I was 14, from Lupus, still in the hospital from having had a kidney transplant from my aunt. Most of ours is Lupus but we have a multiple sclerosis, fibromyalgia and my brother was recently in the hospital repeatedly for what the Dr's can only call some sort of autoimmune disease. Still trying to identify it. I think your joining our club!

Regards,

Penny

[Hidden]

Hello, I have a skin rash just like yours on my forearms, neck and face. I have been officially diagnosed with lupus for 16 years, but have had symptoms much longer. You certainly seem like a case for referral to Rheumatology. Good luck and I hope you get sorted soon

[Identity75]

Hi all,

Thank you for your replies and advice/thoughts. I emailed my GP the other day to see if she thought I was just being a hypochondriac, she kindly called me back today and said that yes it is possible, she said that I've had all the appropriate tests that would indicate Lupus but if my gastro is unaware of my other possible symptoms i.e. The rash on my arm and neck (neither are particularly obvious until pointed out) my past episodes of Raynaulds and the joint pain he may have discarded Lupus as an option and is steering towards the Autoimmune Hepatitis (which I believe used to be called Lupus Hepatitis?).

Anyway she assured me that it would be a perfectly reasonable request to ask my gastro on his thoughts and to make him aware of the other symptoms and that if he agrees he would be in a much better position to refer me to a Rheumatologist.

I've noticed a few people on here mentioning Tinnitus too? I have been experiencing this as well probably for the last few months, kinda when all this first started. It's fine day to day but really notice it when somewhere quiet or going to bed. Occasionally when I get up in the morning my ears feel stuffed with cotton wool. It's very odd. God you just start reading into everything when your body starts failing you.

I'm wondering if Lupus has been sat inside me for some years and is only now raising its head and I'm piecing together all the little clues from over the years. Or I'm going completely fraggle and losing my mind.

Time will tell.

Mark

[Paul_Howard Partner LUPUS UK in reply to Identity75]

Hi Identity75 ,

Let us know how you get on when you speak with your gastro consultant about these additional symptoms. If you would like 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...

[Emily00]

Hi identity75, Joint pain, ulcers and raynauds are common symptoms of lupus but its a complicated disease and everyone presents differently. I would be wary of accepting your GPs claim that all the appropriate tests have been done and interpreted correctly - not because they don't know what their doing but because it is a complicated disease and they are not specialists. Rheumatologists will be more aware of the nuances of the disease and in a much better position to rule it out.

Also, I don't think you should call yourself a hypochondriac, you have symptoms of something and I don't think its unreasonable to want to be sure, after all its your body. If your still concerned after your gastro and GP get back to you dont be afraid to get a second opinion

[Identity75]

Thanks Emily, it's appreciated. I think I'm a bit old school and was brought up to believe that a doctors time is very precious and I should try my best not to waste it. I just worry that I read too much into things and with the hinderance of Dr Google that just gives me a broader scope to look at things and for my imagination to run away with myself.

But you're right and it is my body, and it is my body that is going through some stuff right now, so I need to learn to speak up a bit more for myself. All with respect though. 😬

[Emily00 in reply to Identity75]

Yeah, I'm like you and want to respect the doctor's knowledge and time, and not come across as a pain but doctors are human too with their own experiences and biases playing into their interpretation of symptoms.

I had my first flare in around 20 years about 6 months ago that we're still trying to get under control. I was a bit silly and ignored a lot of little symptoms over the year prior such as a couple of sores that weren't healing, not sleeping well, a bit tired all the time, heart burn and chronic blepharitis. I just thought I needed to have a healthier lifestyle and it would go away but it was actually an indication of the lupus. So now I am wary of dismissing my own symptoms and will make sure I always follow up.

Good luck and I hope you get some answers soon!

[Identity75]

Well I had my gastro appt yesterday to discuss my liver biopsy. Long story short on that, they are relooking at liver transplants being the most likely option.

I asked about Lupus but it was dismissed very quickly by the doc. Which reading posts on here sounds very common.

I'm being referred to Kings for my liver so may discuss it again there.

It's a long ol road isn't it.