GP appointment and possible neurosarcoidosis – self-diagnosing to try and get some help

crop unrecognizable male doctor with stethoscope
Photo by Karolina Grabowska on

Ok, I’m fed up.  Done.  Sick of being ignored. Sick of being treated like a malingerer, or a cry baby, or a bit of a delicate flower.  Or most often, a naughty toddler who won’t follow direction!

I’m in pain. I’m sick. Very sick. Can’t get out of bed, sick.  I ‘fixed’ this by tripling my dose of prednisone.  This gets my muscles working again, calms down my joints, and calms down the peripheral neuropathy.  I can walk with only a cane, or one elbow crutch, rather than a walker or wheelchair.  I’m still fatigued, but I have a good four hours of being upright, on average.

It is enough.  Sort of. Compared to lying on the couch all day, too exhausted and dizzy to sit up.

More prednisone makes more functional hours, but it also messes with my moods. I get irritable, angry, sometimes enraged. I lose empathy, I get tired, I get fed up.  Do you see a pattern forming?

I also get sad, overly empathetic, overwhelmed with love and I feel this need to save the world (or the people I care about).  The mood swings are tiring, hard to control. But mostly I manage.

Because I’m strong. I’m in control.  I’m NOT a cry-baby, I’m not weak. I do not exaggerate, and I do NOT take to my bed at the first sign of discomfort.  I’m 51 years old, I have learned to control my behaviour.

I am NOT a child.  Not a toddler. I am not throwing a tantrum, I have had enough!

I saw my GP today. She barely knows me, I’ve been seeing her for four months, because my previous two GPs up and left the practice shortly after I started seeing them.  Unlucky co-incidence.  Very unlikely when you’re opioid dependent, because switching doctors often is a red flag for ‘doctor shopping’.

So I have to stick with her, good, bad or indifferent.

She is largely indifferent.

She hasn’t had time to get her head around the depth and breadth of my medical issues, and to be honest, she’s not terribly interested. It sems to just wash over her.  She’s like the puppy who only listens for the word ‘treat’ and only reacts to that word – all the others are uninteresting. She is only listening for ‘GP issues’, I don’t get the sense that she is listening to the symptoms and history I describe.

A new doctor is always an opportunity for fresh eyes.  A new perspective.  Someone who may pick up something that all others have missed.  When you have multiple rare diseases and uncertain diagnoses, a pair of new eyes is a great thing.

Not this time.  She’s not intrigued, she’s a bit overwhelmed, I think. She is very young, straight out of training, freshly minted.  Having said that, she is a good GP. She is lovely, has a calm manner, she listens, treats me with respect.  She seems very shy and not great at small talk. That’s OK.  But she just seems….surface level. 

I love a complicated problem, a puzzle. If I were a doctor (rather than a computer programmer) I’d enjoy a patient like me. I’d take the records home and try to figure it ou.


My records have words in there form unethical and rude doctors – my endocrinologist has tagged me as ‘difficult’ because I ask questions and I take an interest in my own care.  She feels that I question her authority and she doesn’t like that.  Then there’s the opioids, which young doctors straight out of school have been taught are ineffective for chronic pain and inappropriate.  She is, however, prescribing with out question. So there’s the upside. 

She’s not messing with the status quo, and my opioids are essential. Could be much worse.

But, I am at wits end.

So I told her I’m tired, I’m fed up, I’m sick of being judged and ignored.   I explained that I’d increased my prednisone and I can’t reduce it.  I told her I need better treatment. I told her I am seeing my new endocrino9logist in May, which is FIVE months away, which is too long for my current state of collapse.  I asked her to run my pituitary hormones, because that will surely be the first thing that my endocrinologist does. I will then have to wait another three months for a follow-up appointment and review. That will put us in August sometime. TOO LONG!

She agreed that made sense.

I then told her my symptoms are neurological as well as muscular. That I have been back to my neurologist and rheumatologist twice. That my rheumatologist is just giving me a garbage dump diagnosis of fibromyalgia, which my symptoms do NOT fit.  He’s just lazy and not interested. Same with my neurologist, he runs a few more antibodies, finds them normal and sends me away hoping I STAY away. 

I need a new neurologist.  I even said that if anyone were interse3td or believed me they’d be sending me for a lumbar puncture.  That’s the next logical step. Except.  Not if you think I’m exaggerating my symptoms, over-reacting, whining, malingering.  If you think that, you’d just ignore me and send me away. 

I told her I am NOT weak. I am one of the strongest people she will ever meet. I am trying to exercise but for the first time in my life, exercise is making my muscles meltdown WORSE.  It takes three days to recover from a light exercise session, walking the dogs.  THREE effing days.  Not OK and this is new. I always exercise. I used to do regularly 5kmn runs on inflamed, flaring joints.  I am NOT deconditioned an I do NOT have a low pain tolerance.

Her face steeled a bit when I started saying this. I could see I’d hit the money.  It made me furious, but I remained even, calm and polite. 

I told her I’d gotten some of my notes from Dr Bitch-endocrinologist, and she’d scrawled ‘Sarcoid?’ on my referral. 

So I googled sarcoid.   And holy shit, it fits very well.  Particularly neurosarcoidosis affecting the pituitary / hypothalamic axis.

My pituitary tumour (microadenoma) might be a sarcoid lesion.  I found several case studies. 

My arthritis, which has always been refractory, could be sarcoid arthropy.

I have a tiny granuloma in my lung.  Not all granulomas are sarcoidosis, but you can see that the evidence is stacking up.

Dr bitch-endocrinologist must have discounted the theory, because she never discussed it with me, not mentioned it at all. because she didn’t give a shit, much easier to write ‘normal

 On the tests and move on.  Because she didn’t like me. I did nothing wrong, she’s an asshole and that’s the truth! And even if she hated my guts, that should not preclude her from providing the best health care she can provide. If that’s her best she should not have a medical license.

But I have seen often that doctors let their feelings get in the way of their practice of medicine. If a doctors doesn’t believe you, you’re screwed. They’ll write things on your file that will make other doctors not believe you too. And then you’ll never get help.  You’re truly fucked. 

Anyway, when I listed these things her face changed.  She became wide-eyed and realised I had a point – what I was saying was making medical sense. And she said so. 

Sarcoidosis is rare, and neurosarcoidosis is very rare. Neurosarcoidosis that is primarily neurosarcoidosis with neurological symptoms as the presenting feature is very, very rare.  But not impossible. 

I am not saying I have sarcoidosis, I know it’s a reach. What I am saying that there is enough evidence there to warrant further investigations, given that my quality of life is very poor, and there are treatments for sarcoidosis that may help me. At the least, my doctors would stop torturing me about my prednisone doses.  I’ll write that up in a separate post, because this will get too long. It’s a fun story too.

I then told her that I’d lost trust in my neurologist because he wrote to her saying he’d performed a complete neurological workup (I don’[t remember that, I’ve had them done many times. He did do a very brief strength test, and found my strength to be normal.  But here’s the thing: I am stronger than most people, due to a lifetime of weight training.  My legs ARE objectively weaker than they used to be, but they feel normal to him because they are strong enough.  If I stopped the prednisone, I’d be very weak.  I’m not going to drop my prednisone to prove I am sick!

He also said he did nerve conduction studies, and he did – 18 months ago. Before this became as disabling as it is now.  He reported those as normal, and there is NO WAY they can be normal because my L5 nerve root compressed the sciatic nerve for so long that I have no nerve function and no ankle reflex.  The nerve conduction study would have shown that, therefore it could NOT have been a ‘normal’ study.

My GP started to argue saying ‘No necessarily….’ Then she stopped, thought a bit, and said “actually, no, you’re right. That should have shown up’.

He did not do an EMG, though he said he did.

In short, he did not work me up properly.  He internally rolled his eyes and went through the motions, and treated me like a hypochondriac. 

I need a new neurologist.  One who gives a shit. I actually said to her
“I am sick of being treated like the fat, fifty, malingering old woman!  I am NOT that person! I want to be taken seriously!”

She was taken a back and said nothing. 

She ordered the pituitary hormones and wrote up my pain meds.  I looked at them later, and she also threw in calcium and ACE. These are screeners for sarcoidosis, so she believes me, she does see that this is a possibility.

Only 30% of people with sarcoidosis have an elevated ACE, and calcium is also often normal.  But still, she is doing the screening.  She is listening. 

That’s all I ask. 



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