Upcoming neurology appointment

JosieP

Hi all,

I joined a few months ago and have found the advice etc useful so this is my first proper post.

I've had a diagnosis of Osteoarthritis in my shoulder and FAI in my hips. I have an appointment with Orthopaedics early November to discuss my hip (I think).

Due to raised Ferritin and so far, all other tests coming back within normal parameters (CT scan and multiple blood tests), alongside symptoms of chronic pain, stiffness, losing my balance, memory issues, exhaustion and pins and needles, I have also been referred to Neurology. My GP has suggested Fibromyalgia may be causing the symptoms. I am already having physio.

As my appointment gets closer, I'm feeling increasingly anxious and feelings of low mood/tearful. On the one hand I want to know what's causing the issues, but on the other, I'm terrified of the outcome and what the future may hold.

I'm not expecting any answers, just wondering if anyone else has had a Neurology referral, what should I expect from the first appointment? Will I get a diagnosis there and then? More tests?

If you've got this far, thanks for reading to the end 👍

claudsl

Hi @JosieP

I am so sorry to hear you are going through a rough time. I understand you are worried about your appointment, try to make a note in advance of any questions or queries you might want to ask the neurologist. Sometimes we can get overwhelmed while attending appointments so at least you will get to ask what you need to.

Hopefully someone else who has attended neurology can help and advise further.

Wishing you all the best

Claudia x

Arciere

Hi @JosieP

Yes, I was sent to Nuerology when I was first experiencing debilitating fatigue, and pins and needles and pain in both hands, feet and sometimes my face. (I ended up being diagnosed with Psoriatic RA).

It was more a discussion. He (The Neurologist) thought I may have had a post viral infection following a Covid illness.

The reason I’m responding to your post, is because I was prescribed two drugs that I really did not like. So if it’s ok, I’m going to say that once you’ve had your appointment and proposed intervention, that you do go back to your GP to discuss whatever it is they say and maybe back to your Rheumatologist.

I was prescribed Modafinil - a wakefulness drug which was horrible, I felt really “wired” yet shattered by the fatigue. Plus a Clonzeapam to help me sleep. I essentially couldn’t bear either drug. So I went back to my GP who referred me to a rheumatologist.

Looking back - I cannot believe I was not referred to a Rheumatologist first. So please do take a measured approach and seek as much advice as you can.

Also Methotrexate made me very emotional (sad and tearful) and when I reported that to my Rheumatologist, I was moved to Sulfasalazine - before moving to Adalimumab.

It goes without saying that my experience was very personal and yours will be completely different.

Good luck

DODGYKNEES

Hi @JosieP I also got referred to neurology a few years ago due to unexplained symptoms including numbness in my right leg, hands, face, fatigue etc. the first appointment I had an initial discussion and tests such as they test gait, balance, reflexes etc. further tests were then arranged such as MRI, blood tests etc. I even had a brain scan. They were very thorough. Easier said than done but try not to worry about the appointment. Hope this helps

JosieP

Thank you for all your comments. I'm trying not to get too worried about my appointment. Hoping I get some answers soon

Bryony

Over the years I've been seen by different neurologists quite a few times.

Neurological issues can be hard to diagnose, and can often take a long time, and sometimes, as in my case with some of my neurological issues never ever reach a diagnosis (I'm technically 'Syndrome Without A Name' - symptoms first started 45 years ago, and still no answers, except that it is neurological). I do also have cervical dystonia which is a neurological condition that is easy to diagnose by a neurologist, though I don't know if it is secondary to my other issues or distinct from it.

They'll take a short verbal history from you, then usually do a few reflex checking, coordination, eye movements, strength tests etc to try to determine if the issues are neurological or something else. They often run a range of blood tests. They may then go on to run some other tests arranged for some weeks or months later, such as MRI scan, nerve conduction tests etc. The most usual outcome is a bit of hand wringing and head scratching and then refer you back to your GP with no diagnosis and no further follow-up.

Some may be very thorough, others very dismissive - neurologists are a very mixed bunch. Just try to take it in your stride. You may get a very quick answer on the day, such as it isn't neurological, or it may take years. Hope you see one who does listen to you.