Lab tests - how to approach them. Advice please

[nomad]

Hello,

I'm finally going down the testing avenue, and I strongly suspect auto-immune/inflammation issues to be the cause. My anxiety is linked to confusion, agitation and physical wasting away. I'm completely non-functional.

I'm also experiencing physical pain in the muscle.

The problem I have is underlying Aspergers (nuerological hypersensitivity) which makes it very difficult for me to articulate in person my symptoms, so I'm useless with doctors, I'm easily fobbed off. I also have breathing difficulties, asthma, and chronic fatigue; all this just adds to the confusion of how to approach this.

I'm now at the point where I'm ready to start putting pressure on the NHS for testing. I think the auto-immune angle is a good place to start, I'd appreciate advice on what tests to request and how to approach this.

Additionally, are there any private labs that could carry out these tests for me? This would be such a stress free way of dealing with the situation.

Thanks

[almamatters]

Hi have you spoken to your GP about this and requested blood tests ? There are several blood tests which can rule out auto immune conditions and your GP should run these if he or she suspects you could have one of these conditions. You are also normally referred to a rheumatologist for further investigations, again if your GP feels this is necessary. There are a lot of these conditions and usually a specialist ends up making the diagnoses. I have no idea if you can get private testing, but normally you will get it on the NHS if your GP feels you have symptoms which point to one of these conditions. Good luck.

[Edie]

Hi Nomad, I have Asperger's too. Often I write things down for the doctor, then I can just hand him the piece of paper for him to read. This is a good way to make sure nothing gets forgotten, and it gives me time to prepare in advance what I need to tell him. Maybe this could work for you.

[nomad]

I've repeatedly pointed out the symptons over the last few years but the only referral I've been offered is psychiatric. So, I've been self-researching to see what the cause could be, and auto-immune is just one avenue that has cropped up.

I've made an appointment to see GP this week where I'll request testing for auto-immune issues. It's mind numbingly frustrating that the GP cannot carry out the investigations on my behalf and refer me for testing. Having to cope with severe illness, and at the same time attempt to access medical services, within a NHS culture which is so dismissive and unhelpful, is just not possible for those who lack the social skills and tenacity to navigate such an obstructive system.

[almamatters]

Hi it took me 8 months to be referred on for testing, as a matter of interest, is there a specific auto immune disease you think you may have? I know from the amount of tests I have had that it is a complex field and that a lot of GP's do not know a great deal about these conditions but will look into things if they feel it is warranted.

[nomad]

Hi Nomad, I have Asperger's too. Often I write things down for the doctor, then I can just hand him the piece of paper for him to read. This is a good way to make sure nothing gets forgotten, and it gives me time to prepare in advance what I need to tell him. Maybe this could work for you.

Thanks, this is what I'm planning on doing now. I have so many varied symptons that even writing them down can be so confusing! Do I focus on the panic, rage, brain fog, chronic fatigue, muscle cramps/pain, asthma ....

I've mentioned all of these, and no tests have been offered except the very basic for B12 levels and folic acid. Instead I've just been prescribed anti-depressants. Granted, I don't pester my GP, I just get deflated/angry very quickly after a dismissive appointment and just can't see the point of making another one and repeating the same thing.

But increasingly I'm understanding that's what I need to do.

I spoke to someone recently who just got diagnosed with Lupus, she said it was a matter of making appointments every week, going to A&E and just badgering the NHS with her symptons before they finally relented and she got tests done. It took her three years of battling, and it was only after she suggested, and fought for, testing for lupus that it was discovered. Purely by chance.

The NHS seems to provide careers, and great working environments for very many people. It's a real shame that providing access to fast and easy blood work to rule out possibilities early on is such a battle. In other countries patients have access to blood work labs directly and cheaply. Here each test needs a referral and a fight, and that is assuming you know about the available tests first.

It's a shame that conversations about the NHS only revolve around funding to pay for blockbuster drugs, expensive equipment for blockbuster diseases (breast cancer, heart disease), and creating employment opportunities.

Diagnoses and treatment for complex chronic illness seems to be at the lowest level in terms of priority. The NHS has sadly just become another economy.

:( <sorry needed to get that of my chest>

---------- Post added at 18:51 ---------- Previous post was at 18:41 ----------


Hi it took me 8 months to be referred on for testing, as a matter of interest, is there a specific auto immune disease you think you may have? I know from the amount of tests I have had that it is a complex field and that a lot of GP's do not know a great deal about these conditions but will look into things if they feel it is warranted.

I suspect auto-immune from a discussion on another board regards muscle wasting and chronic levels of anxiety which are almost psychotic. I also have Asthma and frequently suffer lung inflammation.

Each time I've taken prednisone the anxiety has calmed down significantly. Previously I didn't make the connection. But I had a Asthma flare last week, got some prednisone from A&E, at the same I was having an anxiety melt down, couldn't cope with the slightest bit of stress, brain on fire feeling, hiding underneath the duvet; within two days of taking the preds my mind calms right down, and I'm able to face essential tasks again.

It's only a 5 day course of 40mg a day, but the change in my state of mind is remarkable. I feel like I was having a complete breakdown; three days later I'm starting to function again.

I guess socio-economic issues come into play as well, if the doctors perceives you to be at the lower end of that scale they're more likely to treat you as a hypochondriac. Which is the case with me. They see me very infrequently for 10 minutes and make a snap dismissive judgement.

Did you suspect auto-immune issues ? How did you manage to get testing? Did you have to badger them?

[almamatters]

I had a slight feeling it could be auto immune but I suffer with severe HA and GAD and my mind was telling me terminal cancer or something equally horrible. At first I was given the standard blood tests which came back normal but eventually after a lot of visiting the GP was referred on. I agree doctors do make snap judgements sometimes but you know your body and how you feel and there are several blood tests that your doctor could run fairly quickly which could help to put your mind at rest or persuade them to refer you on for further testing. I apologise but I do not know a great deal about Aspergers syndrome so can't be much help with this.