Neurology want to discharge me after minimal tests. What should I do now?

[LittleLionMansMummy]

Started off a year ago having some symptoms that became bothersome enough to go to the gp. He referred me and mentioned ruling out ms. Was sent for an mri and eventually got an appointment with the consultant. She checked my reflexes, asked me about my symptoms, said my mri was clear apart from some minor stuff on my spinal cervix which you'd expect for my age (39) and she could categorically rule out ms. She implied that it was psychosomatic, but sent me for nerve conduction tests on my left arm only in case it was carpal tunnel (the left arm pins and needles was the least worrying aspect for me tbh).

Returned from hol on Friday to find a letter asking me what I want to do next, implying that since she's ruled out ms and carpal tunnel there's nothing apparently wrong with me. The thing is, I didn't go well prepared with a list of symptoms and there were some I didn't really go into. I don't want to give her any ammunition that I'm a hyperchondriac and dismiss me again. Likewise, it could well be that neurology is not the place for me, but I can't face starting from square one again and have no idea which department I could be referred to (could be autoimmune, could be spine etc)

My balance is shot, my spatial awareness is shit and I'm forever knocking into things, I feel like I'm leaning to one side and therefore my gait is all wrong and I'm experiencing muscular pain on my right side (hip, calf and shoulder).

I'm still experiencing symptoms, but have no idea where to go next as it seems like she's confident it's not neurological and she's the one that's done years of training and is the expert yet has asked me what I want to do next. I'm not the expert, but she's only specialises in neurology and can't advise of what else might be wrong.

Does anyone have any advice please?

can a physio help?
or pilates for core strength?

They didn't ask about sleep but I generally sleep very well (peaks and troughs but on the whole pretty well) and I get through 2 to 3 litres of water a day.

The problem is I don't know enough about NHS processes to know how referrals work and whether I'd need to go back to my gp again to be referred to a different department...?

I can't advise you (wish I could) but I wanted to tell you my story so you don't feel so alone.

I went to the gp when I had, what felt like recurrence of glandular fever, and I was off sick for weeks on end. I felt wretched and was worried that I couldn't pick up.

He sent me for blood tests, saying if they all come back normal he can only assume it's a mental health or personality disorder. I was so upset by that, as I knew it wasn't either of those.

Bloods came back normal.

I didn't improve much.

Then suddenly, I had extreme symptoms overnight, making it impossible to walk and making me forget my PIN number and email password.

I got sent to hospital for scans and they found brain lesions . MS.

The GP apologised months later.

In your case OP, I hate to say it but I think they will do a watch and wait, so either you'll get worse and so they can treat, or it'll get better and always be a mystery.

Just one thought. Ms is sometimes confused with lymes disease. You haven't had a tick bite at all?

I don't know enough about NHS processes to know how referrals work and whether I'd need to go back to my gp again to be referred to a different department...?

Referrals are usually always through GP.

There are loads of rare and obscure neurological diseases which are hard to diagnose... and there are also lots of symptoms which could be the result of a neurological disease but could also be the result of lack of sleep, stress etc.

Could you keep a diary of your symptoms and go back to the GP in a couple of months if there is no improvement? It might be worth seeing the optician for an eye test if you haven't recently as neurological disease can result in visual problems (and visual problems can result in some of the symptoms you mention, too).

Thanks Difficult - would Lymes Disease show up in bloods? I had an unidentified bite in my leg a long time ago, it got better but I've had blood works done since (all ok, nothing out of the ordinary).

Look into functional neurological symptoms, it's a real neuro illness not psychological. Ask for a referral to St. George's hospital in London to see Professor Edwards if you thin you might have it. Regular neuros seem to lack interest in a condition which accounts for 30% of their caseload.

www.neurosymptoms.org/

Irene eye problems was actually one of my concerns - I had eye tests at optician (my right eye becomes inflamed quite regularly and I've had a blood shot right eye, some days worse the others, for many months). I was prescribed glasses for screen work but otherwise given a clean bill of health. That was back in April.

I know two people who suffered from rare neurological diseases and in both cases it took many months/years to get a diagnosis. However, I also know people who have suffered scary symptoms as a result of stress or some other short-term issue which resolved itself. Neurology is still very much a developing science.

I would get a referral to another neurologist. They're all different. I have a neurological condition that was diagnosed by the 2nd neuro I saw in London.

@mrsjackrussell would I have to go back to my gp to do that or can I request it with the neurology dept?

Thanks Momzilla many of those symptoms are very familiar to me.

Have you had a blood test? Had b12 levels checked?

I've had blood tests but don't know if they checked specifically for b12.

@momzilla82 Thank you for the link. This looks far more like my experience than epilepsy and no neurologist I've seen has mentioned it yet. I will have questions at my next appointment.

@Bay Trees there's lots of us around, once you've had a look at the link, there's a lot of Facebook support groups (FND hope and FND dimensions) where you can ask questions. To be honest there's about 4/5 specialists neuros in this specific condition dotted around the UK, and they have no idea what causes it (yet) and very little research.

The way it was explained to me, MS is a problem with the hardware in the central nervous system- FND is a software/ wiring issue which doesn't show up on scans.

Literature is emerging all the time. Feel free to PM if you want to ask anything. I was diagnosed 2 years ago

I would also say get your B12 checked. If it's v low it can give neurological symptoms.

@zzzzz apologies I didn't mean to cause offence to anyone with psychological issues, far from it. It's a cause of much frustration to people suffering with FND to be told it's all in the mind when actually it's a biological illness they haven't found the cause of yet. This causes a dismissive attitude towards the condition by healthcare professionals who think we can magically reverse our paralysis/ unthink our very real medical problems without offering any real treatment for such a devastating condition.

@zzzzz you'd like to think so wouldn't you... but sadly this isn't the experience of people suffering with it. Had it not been my own experience and other sufferers I know, I wouldn't have believed it either.

Whatever you’ve got, I’ve got it too. Scattered neurological type symptoms, feel like you’re leaning (medically this is called disequilibrium by the neuros). Right down to the occasional inflamed eye. Clear mri too.

I don’t think it’s ms but I don’t know what it is. Mine comes and goes. I suspect mine is a form of fibromyalgia as I also sometime get stiff and achey, and scattered neuro symptoms can also be a manifestation of Fibro. I’ve given up on pursuing a diagnosis as Fibro doesn’t have much treatment and no cure. I do find ibuprofen helps a bit first thing in the morning though.

Also I don’t think it’s psychosomatic. I think it’s just not been medically defined as a disease yet, diagnostic criteria etc.