Who’s treating you?

[maye1]

Is everyone here under a specialist?

Anyone being treated solely by their GP?

[Anniemack1]

Hi Maye1

I have 4 consultants at my local hospital but tbh they all leave treatments to my rheumatologist. My Gp to will only go with what he has recommended on his notes that he sends on to them all. So I feel like I should only really see him.

Are you being treated only by your GP? You can ask them to refer you on to see a rheumatologist but the wait unfortunately can be long.

Annie x

[maye1 in reply to Anniemack1]

Hi Annie,

Thanks for your response and yes, only my GP. 8 years ago I went to urgent care for something different and they were concerned about AI. I was triaged and was sent to 5 or 6 specialists within a few weeks. I heard Lupus, Vasculitis, Behcet’s. I ended up under a rheumy. I refused Plaquenil because the dx seemed haphazard and because I hated that rheumy. Been under my GP since. Symptoms have progressed and neuro symptoms started. Two months ago started Plaquenil and had a double dose of Kenalog. MRI showed cluster of non specific hyperintensities in frontal lobe and another in parietal. I’m 40 and until recently was very fit and active; now unable to walk more than s block due to instability. Bought a cane - helps minimally. Kenalog is wearing off and pins and needles are back and balance worsening again. GP didn’t look at images and dismissed lesions because radiologist used word “nonspecific”. He said that means they are normal. C spine MRI showed disc bulging into thecal sac but report denied myelopathy. GP thinks symptoms are due to hernia ruin and ordered epidural steroid injection into C spine. Waiting for that. Said if that doesn’t work he’ll look at neuro. Has not done a neuro assessment on me. I requested specialist referral. He said “no” for rheumy and reluctantly agreed to neuro - said neuro will dismiss me because there are no lesions on cerebellum. Wants me to be patient and wait for Plaquenil to start working. He keeps bringing up my thyroid even though U/S of thyroid is normal. Said “no” to ANtiphospho testing. Said “no” to MRA. I’m confused as to why he won’t refer to specialist and also why Vasculitis is not being reassessed. Aren’t Vasculitis lesions labelled as “nonspecific”?

Always trusted him but he had a personal issue about 6 months ago and I’m now questioning his judgement.

That’s was the long answer. Grateful for any suggestions. Thanks.

[Anniemack1 in reply to maye1]

I’m sorry he isn’t listening to you. It is however part of his job to listen to you and put you at ease. He may well have said no but you have the right to be referred if you want to. I would tell him not ask that you want to be referred.

If he won’t change his mind then ask to see a different Dr at the surgery or join a different practice. He is being very unreasonable.

You could also go private find where a rheumatologist at a local private hospital, then get on their books, once you have seen them you could then ask to go through NHS. They would then transfer you over and you don’t have to deal with your GP.

I don’t know much about vasculitis. I hope you can get something sorted soon, let us know how you get on. X

[maye1]

Thanks. I’m not in the UK so it would work differently but I hear what you’re saying - this isn’t adding up. Started to feel like this is in my head - questioned that with him, asked about antidepressants - he said no, that AD would make it worse. It’s not adding up. I agree, I should be under a specialist.

[AgedCrone]

You should always get a referral to a Consultant ....with the best intentions GP's are just not qualified to be lead physician in Auto Immune conditions,

You may only see the Consultant every 6/12 months, but you do need his/her expertise in prescribing the correct drugs,

[maye1 in reply to AgedCrone]

Agreed. And the correct DX for the correct treatment.

Is EVERYBODY here under a specialist? Please let me know - I will not be offended. I’m aware now that I have not been a good self-advocate. And no family close by to kick me in the ****.

[Hidden in reply to maye1]

You do absolutely need to be under a consultant, but I’m not sure whether a neurologist or rheumatologist would be better - or a vascular doctor like mine who works with a rheumatologist.

A lot of this will depend on where you live since you say you’re not in UK. Vasculitis UK may have a list of specialists outside UK?

I know some people with Sjögren’s who aren’t under specialists, mainly because there really isn’t a treatment for us. In fact I met a few people at a Sjögren’s group meeting who were just seeing their GP - despite one seated next to me having had Sjögren’s related non Hodgkins Lymphoma. She said she had previously been under Rheumatology but like you, she hadn’t liked them much so had been willingly discharged from them and oncology, back to her GP. Once your diagnosis is confirmed perhaps this is okay if you get on well with the GP.

But in your case there isn’t a firm diagnosis yet and some form of Vasculitis (which I believe is what I have too aa well as Sjögren’s) is a strong possibility so you need to be under a specialist in Vasculitis. General rheumatologists mostly don’t know enough about Vasculitis or Sjögren’s (or a combination like mine) to diagnose and treat it effectively - let alone a GP.

If your GP has had personal issues then they may be losing their way as a general doctor. The relationship can change as I’ve experienced myself. It’s no one’s fault but when this happens a fresh pair of eyes are needed quite urgently I would say.

I say this because an old friend is a GP and a mutual friend of ours was under her care - and was badly left down by her due to the GP friend’s personal issues. It was a really big deal and patient friend ended up losing a kidney and making a formal complaint about the GP friend - who now has really big problems finding work - mostly due to her failing to face up to her own problems. Awkward!

I seem to have quite similar symptoms and signs to the ones you describe and there’s no way my GPs would want to deal with them. Mine are quite new because I relocated several times - and they say I’m too complex, although they are supposed to treat me for my Hypothyroidism - but just stick to prescription of 125mcg Levothyroxine as an endocrinologist stated (thankfully!)

I’m having my 3rd brain and spine MRI in just over 3 years but not really expecting them to see anything progressing. I think I do have something neurological going on but I know that things don’t always show up in tests. And stuff like non specific white matter is very hard for even a neurologist to correctly interpret apparently.

Parkinson’s doesn’t show and nor does Parkinsonism caused by a different underlying condition such as Sjögren’s or MS. Other tests are required such as a DAT scan. I’m guessing that conditions such as Fibromyalgia, ME, FND etc are often probably all neurological disorders that haven’t shown up in imaging so get dismissed as chronic pain disorders instead. So little is really understood yet about the brain, vagus nerve and the way these systems interact with the gut and peripheral nervous system.

I do get passed from neurology to rheumatology a lot. Neurologists just say Sjögren’s small fibre neuropathy but rheumatology thinks more to it -so neither fully take the reins with me so far.

You absolutely do have to learn to be your own best advocate because no one else has time or real interest it seems.

[AgedCrone]

I have been extremely fortunate in that I was diagnosed by a Professor of Rheumatology in 1999......on diagnosis ...he then referred me to a Consultant Rheumatologist & I continued to see him until I moved out of his area, he then referred my to my present Consultant.

I cannot answer for everybody on HU, but I think it looks as if most people are not just treated by their GP.

So consider your butt kicked (!) & ask for a referral to a suitable Consultant..if you say here which country/area you are in there maybe some people who can give you the name of a Consultant they are happy to be treated by.

Good Luck.....hope you get some satisfaction soon.

[Lupiknits]

I have a rheumatologist and my GP is guided by him. My GP has said quite frankly that he does not have the depth of knowledge to treat me himself. On occasion, my GP has arranged urgent referrals for symptoms he's aware he doesn't have enough expertise to deal with.

I'm happy with this arrangement.

[maye1]

Thanks for your comments and the wake up call. I live in Canada and I read that Vasculitis is diagnosed and treated by Rheumatologists here. I need to see a Rheumatologist - whether it’s Vasculitis or not. My GP should not have started me on Plaquenil; that’s outside his role. Its becoming clear. He’s flipped it on me that I need to be patient but that’s absurd.

I will tell, not ask, for a referral.

[Bebe76 in reply to maye1]

Your GP is not qualified to treat or diagnose neurological or autoimmune disease, although he seems to think so! I would definitely get a referral or a new GP before your symptoms get worse.

[maye1 in reply to Bebe76]

Yeah - he thinks he’s qualified.

[Kimplr]

I am in the US and see a rheumatologist for lupus. She manages and adjusts my prescriptions. She also orders the bloodwork. I see her every 3-6 mos. I have a GP who I see for annual checkups.

A GP is who first suspected I had lupus, but that GP then referred me to a rheumatologist. I think this is the norm here.

[Margas]

GP, Rheumatologist for Lupus, Neurologist and Psychiatrist.