Ok, I’m sorry about posting this again but no one responded to the previous post about this, it’s now kinda got lost in the forum and I really need some adivce!
Okay so here’s the issue. I’m 18 years old and started showing signs of a neurological condition when I was nearly 17. I got referred to a neurologist, who diagnosed Sydnehmas Chorea, then sent to uclh for a second opinion. The neurologists there all agreed it definitely was NOT any Chorea, and they were not impressed with my lovely neurologist (he was a rather unique and funny fellow) because of his diagnosis, for something else quite serious that I’ve forgotten and the medication he had put me on (Haloperidol), so I got referred to a neurologist at UCLH, who I must admit, did seem a bit more understanding.
Here’s the thing - I have had an EEG, movement test and an MRI when I very first noticed the symptoms. So surely they would know if it was multiple sclerosis, they’d see the scars right? It’s just, I have a lot of symptoms related to multiple sclerosis, I know that honestly they’ve looked into it far enough with the EEG and MRI. I don’t have anxiety, and my first nurologist mentioned something about Lesions, I can’t really remember.
My symptoms had faded away by the time I had an appointment with my new neurologist. He set up an appointment for this April just to check that they stayed away, basically saying he would discharge me if they did! Well my brain is being a bully and the symptoms came back after a few months of being gone (just before I got discharged, thanks for nothing brain) and they’re slightly worse!
I have so many symptoms that listing them all would bore you (and high five if you’ve stayed this far - almost over, I promise)
The main symptoms though are:
Pain: I’m under a rheumatologist for the pain and loads of old people stared at me when I went for my appointment, but most of the fellow patients are positively lovely, I just find it rubbish being 18 amoungst 80, I know it’s rude and incosiderate.
Loss of vision: I went from being a -2.5 to -4.75 in both eyes. I also get occasional get episodes of blurry vision.
Dizziness: oh wow, I can be like a drunk person! I can be dizzy and light headed.
Pins and needles: I very rarely don’t have pins and needles, but they jump to different parts of my body all the time, they’re not specific to one area.
Intelligence: I used to be super intelligent (well as intelligent as a lazy teen could be anyway) but now I find I struggle with maths, absorbing information, writing essays because I loose focus and understand what’s been taught- especially in anatomy and physiology. These things all came naturally to me before. I was super focused and could poop up a ten page, distinction worthy essay in half an hour. Now I loose focus after a while, work slowly and become VERY lethargic in the afternoon/late evening.
Taste: Sometimes dairy products can give me a blood/metallic taste
I also struggle with my vocabulary, I used to know all these smart words and I could tell you all about the “sea shells that she sold on the sea shore” and the red and yellow lorry - without getting my tongue twisted. It was quite a party trick! Now can’t find the words, slur my speech sometimes, can’t get my words out sometimes and get my tongue twisted on simple things.
Do you guys have any idea what’s wrong with me, and why my brain is being so cruel to me, making me think the symptoms had gone away (it was great, brain waited till I’d finished my first semester and was then like, that’s your lot, so great. Wasn’t kind enough to wait for me to complete my Health and Social Care course, oh noooo that would just be too nice for brain).
I’m aware that neurological conditions can be similar, so they take a long time to diagnose, but it is kinda unfair really (selfish teen alert)
P.S it’s probably worth noting that not only are the symptoms now slightly worse, some of my previous symptoms have drastically faded (such as speech loops, now so rare I didn’t mention it as a symptom) and some have really increased (tingling and dizzines).
Sorry it was a long post, I hope you guys can help