Consultant or not?

[EvilAsh]

Thanks to a doctor's surgery admin error, my neurologist appointment has been moved from Monday to... August!

It got me thinking though. Many people on here have said GPs can dx and neurologists don't do much more than tell you that you have fibromyalgia. Should I worry about the wait? I have a vegan whole foods diet, I take no caffeine or alcohol. I attend Pilates weekly and keep active. My painkillers, with some tweaks, seem to be working for the most part. I rest and and sleep (thanks to the Tramadol). A lot.

My wife wonders if I should go private, but is it worth it? Should I ask to see pain management instead?

Many thanks in advance,

Scott

[Hidden]

I had an 8 month wait to see the NHS rheumatologist so I paid to see one privately. She looked at my blood results, my symptoms, asked me questions, prodded all the pain centres ( the 9 pairs of areas shown in the standard fibro test) told me I had fibro, gave me a leaflet and wrote to my GP. My concern at the time was that I might have Lupus and she was able to confirm I didn't have that. Apart from that she told me what I already knew.

If your GP is treating you for fibro, you're happy with the treatment so far, you don't have any unusual symptoms that might suggest something else, I'd save your money and wait until August.

I wouldn't be happy with the GP practice error but then my surgery is hopeless so I have wouldn't expect much else !

[EvilAsh in reply to Hidden]

I wouldn't say they're treating me, more like I'm doing my own research on how to manage it and they are chucking painkillers in my general direction...😃

I've written the surgery a really long complaint and copied in my local CCG, so I'm waiting to see what that shakes loose if anything!

[JGBH in reply to Hidden]

Hi, I would agree with you . The only thing that I wonder about is how did your rheumatologist could be so confident you haven’t got lupus... did she “think” you don’t have lupus OR did she ensure you had the tests and so which ones?

Apologies to EvilAsh for hijacking his post and hope he will find a way forward.

[Hidden in reply to JGBH]

I was referred to the NHS rheumatologist, got a letter telling me to go for a load of bloods so the results would be in before I got yo see him/her. In my naivety I thought I'd see someone within the 18 weeks so had the bloods done and asked for a copy of the results. I also had results of previous bloods so when I made the private appointment I sent copies of all the blood results ( about 4 pages)

She ruled out Lupus by something ( sorry,meant remember what) not showing in any blood tests. Plus the rash on my face was not classic lupus. It had been diagnosed as rosecea in the past but unfortunately when I saw an NHS dermatologist it had died down, nothing for her to see. She told me to return next time it flared up as she wanted to diagnose it accurately. When it flared my GP refused to refer me ( only way I could go back) and prescribed cream over the phone ( by a GP who has never met me) Yet another reason why I've given up on GPs and haven't seen them in over a year.

[JGBH in reply to Hidden]

At least are you certain you haven’t got lupus? That is important as you know. Agree with you regarding GPs and many consultants. There are a few good ones but this is rare.

[Hidden in reply to JGBH]

I don't think I do have lupus but I'm not 100% convinced I do have fibro. I get pain but it's easily controlled with just paracetamol and some CBD oil if it gets really bad. I find the fatigue far worse and debilitating. Although my blood tests show no thyroid levels far out of the scale, they do show a possible problem with my pituitary gland. And most of my symptoms also fit hypothyroidism. I have a goitre ( enlarged thyroid gland) but as that was scanned, declared non cancerous the Endicrinologist wouldn't do anything.

So now I just take every vitamin I can think of, plus turmeric and an Ayurveidic med and hope I don't get any worse.

I either have fibro far milder than everyone here or I've been misdiagnosed. But most of the time I don't have the energy to worry about it !

[JGBH in reply to Hidden]

Please you don’t have lupus. Incidentally what blood test indicated possible problems with your pituitary gland?

[Hidden in reply to JGBH]

Blood test showed low TSH ( low within the range) but a free T4 only just in range. Might not be thyroid but odd I don't have the severe pain associated with Fibromylagia. Don't know if I'll ever get to the bottom of what's wrong with me though.

[JGBH in reply to Hidden]

Thanks for your answer. So with a possible pituitary problem has your GP advised you to have a scan of pituitary? If not then it might be a good idea to request such a scan. You can’t just be told you have “possible “ pituitary problem and leave it at that.... you need to be certain there are problems or not and then be given the correct treatment.

[Hidden in reply to JGBH]

I have about as much chance of being correctly treated by a GP as I have of flying The drs in this area are totally useless. I'll keep researching and trying natural remedies. I'm not feeling as bad as I did last year so there's hope.

Good luck with your treatment.

[JGBH in reply to Hidden]

Most GPs are useless throughout the country.... same for me. Unless they deal with easy every day situations like blood pressure, statins, etc. Anything more complicated and they’re unable and unwilling to find out. Anything for an easy life...

How you will find a way forward.

[deejames]

It's sounds as if you have control of most aspects of your condition and are taking a proactive approach.

A referral to a pain management clinic could give you some additional pointers to manage your symptoms . I'd adk soon for the referral as the waiting list can be very long

Dee

[Palioly]

Private if you can afford at least an initial consultation - it can take up to 3 months on NHS just to get to see a Consultant, then another long wait for tests to be done, and more waiting to implement the results of the tests. And it saves the NHS some costs.

Private treatment is however awfully expensive and some things are not done by private hospitals. So - inital Consultant but thereafter NHS.

[Hidden]

Hi,my gp recently sent me to a neurologist because of the numbness I keep waiting up with and that weird creepy Crawly feeling under your skin he took 10 mins to test my reflexes to then tell me he can't help with fibro and I have been referred back to the rheumy it was a complete waste of my time and his. In my opinion I feel like as soon as you have fibro that's their diagnostic for everything else that goes on I forever hear "It could just be did to your fibro " I would not waste time on it tbhxx

[Kaspinallsgr8 in reply to Hidden]

It's so frustrating. We're being fobbed off and suffer with symptoms that point towards other diseases but which are often ignored because we have fibro. Fibromyalgia is not understood completely and is used as a catch all for so many random symptoms. Many doctors, including rheumatologist, just add every new symptom we get into the fibro melting pot. I think If I hadn't already been diagnosed with IC and heart disease before I was diagnosed with fibro then both of those diseases would have been declared fibro symptoms too. I feel it's a dangerous practice because things like cancers and other life threatening diseases could be overlooked until it's too late. More serious research needs to be given to sorting out what Fibromyalgia is and what treatment should be given. Right now it's at the old "go home and drink plenty of fluids, take an aspirin..." stage, in other words most have no idea what to do.

[Hidden in reply to Kaspinallsgr8]

So very true those words I feel like I am always telling the doctor what I want them to test me for as they always put it down to a flare soooooo frustrating xx