Autoimmune?

Chelle

Sorry for the long message. Just a bit of background. I’m 32, been having symptoms for almost a year now and I’m absolutely stumped as to what it is. I am a physician but don’t have much rheumatology experience so it is frustrating me even more. My symptoms are:
Painful joints (mostly ankles/feet/hands) always in the morning or after rest
Extreme fatigue
Frequent mouth/tongue/throat ulcers
Frequent sore throats
Scalloped tongue and swollen lips
Poor temperature regulation
Frequent flu like symptoms
Diarrhoea/vomiting
Night sweats
Morning sickness
Peripheral oedema up to knees
Lacking motivation
Hair loss
One episode of blue nail beds
Chronic rhinitis

It has completely taken over my life. I spend a lot of time in bed. Looking to find answers I have had regular blood tests. My ESR is always above 30 and is usually 37-43. My CRP is around 20-30 yet my WBC are always normal. Rh factor was ‘positive’ once at 13.5 but negative 3 other times, all ANA negative, anti-CCP negative. Lupus anticoagulant weakly positive, e-GFR between 65 and> 90. Liver, thyroid, U&Es, vitamins, FBC all normal.

It’s taken me almost 5 months to get referred to the rheumatologist and now I’m waiting another few months for an appointment. Does anybody have similar issues? Or any pointers as to what it could be? Or even what I might expect to happen next? Really struggling quite a lot with this.

[Deleted User]

Hi Chelle and welcome to the Versus Arthritis online community forum.

Sorry to hear that you are finding things difficult; it can be such a frustratingly long road to get answers. I can imagine it's even more frustrating if you are a physician yourself but find yourself in a situation outside your specialist area of knowledge.

As a physician you are possibly doing this already, but I have found it very useful to keep symptom diaries and take photos of my symptoms during flare-ups, where appropriate - when you are waiting a long time for a referral appointment you can almost guarantee that symptoms won't be at their worst on the day you see the consultant and I've definitely felt that my symptoms and myself have been taken more seriously when I've been able to offer a clear concise record or photographic evidence. (It's also useful as a self-reminder if you have symptoms that can wax and wane from one month to the next, especially if fatigue affects you).

A member of our Helpline Team will be along soon to offer a reply and I'm sure members of the forum will also be able to share their similar experiences and symptoms. I do hope you get some answers before too long, keep us posted with how things go.

If you feel as though you are struggling and it would help you to talk with someone you can also access the Helpline Team by phone (free) on 0800 520 0520 (9am-8pm Mon-Fri)

Best wishes,

Ann
(Versus Arthritis online community forum moderator)

helpline_team

Hi Chelle and many thanks for posting on the forum, I’m so sorry to hear that you have so much going on and yet have no answers. I can see Ann’s response to you which I hope you find helpful and which leaves me little to add.

I can understand that as a physician yourself with little rheumatology experience, that it really must be frustrating not knowing what’s happening. As you say it has taken nearly 5 months to get referred to a rheumatologist, I was wondering if you could have the initial consultation privately, if this is something within your means. At least then you might be able to get the ball rolling with trying to get a diagnosis.
If we are talking about auto immune conditions they can take a long time to diagnose.

I also wonder if you could speak to PALS to see if there’s any way to speed up the referral times.

For shared experiences it would be helpful for you to re post on our ‘living with arthritis’ forum https://arthritiscareforum.org.uk/viewforum.php?f=8 the forum members are very knowledgeable around their arthritis and its also a great place for support.

Please give us a ring on our helpline: 0800 520 0520 (weekdays 9am – 8pm) if you would like to talk to us about what’s going on for you, here we can take our time to talk informally and in confidence.

I hope you have some answers soon.

Best wishes
Lynda
Helpline advisor

Chelle

Thank you both for your responses. Funnily enough my appointment came through today! It’s on the 9th December which isn’t all that far away in the grand scheme of things.

I will definitely repost in the living with forum.

Thanks again!

Chelle