Getting a consultant referral for a CT-PET scan for relapsing polychondritis?

[Sarah030609]

About 2 months ago, I started noticing chunks of my face rapidly atrophying - nose cartilage and around eyes especially, but also my jaw bone decreased by almost half, causing my friends to ask what had happened to my face.

I told the doctors - they insinuated I was crazy. It continued.

I became very sick. Completely fatigued. Terrible acid reflux and digestive problems. Unable to speak properly. Unable to hold items of any strength. *Constant breathing problems* - if I hold my head to a certain side - I cannot breathe or swallow - I am constantly trying to find a position to breathe in.

I then noticed the entire back of my head tissue had gone and a lot of the support from my neck (I started wearing a neck brace to feel better).

A week later it spread to my body and I began feeling structurally unsupported, especially as a lot of cartilage in my hip and lower back just disappeared. I've fallen twice - once in a public place which was particularly painful.

I made trips to several GPs in the same surgery, A&E and they all basically insinuated I was mentally ill and to come back if I was dying (this is coming from a previously completely fit and healthy 29 year old with practical no health issues history).

I kept getting asked if I was stressed - I was perfectly happy before it happened - loved my job, went gym every other day, active social life - happiest I'd been in ages. They wouldn't listen and referred me to a mental health specialist, despite me insisting my only anxiety was because I couldn't breathe and was losing my body.

They remarked on my strangely situated head (it now leans far to the right due to less support on one side), flat feet and skeletal frame but told me those things could easily have been like that before and I didn't notice them (my thoughts on that are not PG enough for a family website) and that I could have lost weight (I hadn't).

So I began rapidly googling and it seems rapidly progressing oesteoperosis or relapsing polychondritis are my only 2 options in terms of cartilage loss.

It seems to fit much more with RP and I NEED a diagnosis fast or I know I don't have long. Every day my breathing gets worse and I can bearly sit up properly.

My breathing is worse due to pain around my chest/ribs and I now need a walking stick to walk because I am so fragile. My body feels like it's going to collapse.

My figure is tiny and skeletal (which again, docs are attributing to weight loss despite the fact that the actual fat is still there).

I am in CONSTANT pain, especially in my trachea/throat area and my breathing is of the greatest concern to me.

They don't seem to understand that despite the fact that I CAN breathe, it's very difficult for me due to the structural changes.

It gets worse every day and I don't have long to get this under control before it does irreversible damage.

My only chance for a quick diagnosis is a PET-CT scan.

My questions are:

- How can I convince a consultant rheumatologist on the first consultation to refer me? (I have the means and the appointment to do this privately). Is this at all likely/possible?

- He is part of the Nuffield Hospital. They do not offer PET-CT so my appointment is with another provider (but unfortunately they need a surgeon referral from a different hospital). Will this markedly decrease my chance of referring me? (I assume the surgeons get a cut when they refer patients for scans within their own hospitals)

Help appreciated massively,

Sarah

[LH44]

Hi, I don't know the answer to your actual question & I don't have visible cartilage loss (def pain) but I have many symptoms like you 'with features of RP' as one of my diagnoses. Only recently did I get the reflux & digestive problems with severe nasal drip. I was referred to ENT because I told my Rheum it felt like I'd be hit in the nose (didn't have the drip then). ENT looked into my sinuses with a flexible nasal endoscopy & saw a lot of inflammation, mucopus (& thought I'd had sinus procedures so I'm not sure what they're looking at). Now they're doing a CT of my sinuses.

I just wonder if this could be a starting point for you to move things forward (unless you've already had ENT investigations)? I'm actually considering a private MRI on my chest as I've had a ripping in the cartilage a long time (which will never show on the many chest x-rays I've had).

[AgedCrone]

If you are asking for a Private referral there should be no problem, as cost is a major factor when GP's refer asking for scans.

Another reason is GP's don't want to refer someone who is the found not to have what he refers them for & he looks incompetent.

You could just ask for the referral,& bring up scans once you get to see The Specialist, you wouldn't get a scan on the first visit anyway....but once you get in to see a Consultant, hopefully things will start to move on.

Good Luck, do hope you get some help soon.

[KayHimm]

Wow — you are really having a rough time. The good thing is that you are seeing a rheumatologist who will be expert in the conditions you mentioned and others. He will know exactly what tests to order whether it be lab tests or CT scans. Be up front about your fears so the doctor can tell you why he is ordering particular tests. I feel confident the rheumatologist will get the scans you need. How soon is your appointment?

[Sarah030609]

Many thanks for the replies.

The PET-CT referral needs to come from the consultant, not GP.

That’s why my question is:

- would a consultant from one private provider be likely to refer me to scans for another and how can I facilitate this?

[KayHimm in reply to Sarah030609]

I know you are very worried. It is best not to worry about the logistics of getting the scan. Doctors do whatever they need to do to get the care patients need. If you have to be referred to a larger center, they will do that. I think you should try to see a rheumatologist privately if your first appointment is months away. That way, you could start on medication right away if it is autoimmune related.

[AgedCrone in reply to Sarah030609]

If the hospital where you see the. consultant doesn't have the right scanner yes he would/should refer you to the most suitable facility if he has admitting rights at that hospital ...speak to his secretary & ask how it can be managed.

[Hidden]

Hi,

You don’t say where you stay but you need to see a Consultant with experience in diagnosing RP as it’s one of the rarer Vasculitis variants.

It’s not just a case of having a PET/ CT, it needs to be interpreted by an appropriately qualified Consultant. It’s also important to keep an open mind re diagnosis.

If you are in the UK then the best place to go is the Vasculitis and Lupus clinic at Addenbrookes Hospital to see Prof David Jayne.