Any ideas on what's wrong with me? :(

New diagnosis and before diagnosis
1

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) :frowning:

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 :slight_smile:

2

Hello Beth, Sorry to hear your post got lost, but at least it’s here now. MS is a random desease, it comes and it goes with different symptoms. The Dx, it takes a MRI and many other tests to determine if it is ms. Also your medical history is involved. I feel for your dilemma and urge you to follow your feelings and get a MRI along with other tests done, you never know it could be something else and not ms. I wish you best wishes and send you (((((HUGS)))) for a quick answer. Janet x

3

Hi Beth,

I would certainly go back to your GP and explain that your symptoms have come back. Also,ask for the results of you previous tests, MRI results etc. You mentioned seeing the neurologist in April, but also mentioned being discharged? Did you mean you have an appointment for this coming April? If so, then you’re still in the system, which is good. Make sure your symptoms are recorded with your GP, and make a note of them yourself to take along with you when you see the neuro. If you’ve been discharged however, I would ask to be re-referred, you would certainly be entitled considering what you have been through with misdiagnosis etc.

Good luck

4

Hello, i’m new to this forum and came across your message. Have you had any news on whether or not it’s MS or not? I really hope that it isnt.

I too have had many strange symptoms and what i would call three “episodes” but i have not been diagnosed with MS. I am too scared to go back to see my neurologist as i dont think i want a definite diagnosis.

I couldnt find out how to post a new message but wanted to write my symptoms down to see if anyone could help me with this. I’m really sorry that it’s so long.

I’ve had vision problems (a diamond shape appeared in my eye a couple of years ago and although it only lasted about an hour, it scared me) and the vision in my right eye isnt as good as my left. I sometimes get the feeling that it is bigger than my left eye and is slightly too big for the eye socket. I’ve had about three episodes of the room spinning on me and lots of light headed episodes. My hands have started shaking slightly. It’s so slight that other people might not notice but i have noticed it and it upsets me. I’ve also suffered from headaches for years but over the last year or so they’ve gotten worse. I was found to have an almost non-existent level of vitamin D which i was pescribed supplements for, but havent been back for a check-up. I’ve read that vitamin d levels can be lower in people with MS. Lately my arms have been feeling really heavy and they become quite tired very easily. Even typing this they feel tired. I’ve had crawling feelings on my left arm and then cold sensations that lasted about a week. It was at a time when i decided i wasnted to restart playing the piano so when it started i thought it could have bene that but i couldnt link the cold sensations to overused muscles. I know that this could all be a result of stress or anxiety as I’m sure that my body is stressed because i have convinced myself i have MS, but i am just so scared to go and see the neurologist for fear that she will confirm it.

At one point i had seen so many different doctors that one GP told me that he thought that i was so convinced that there was something wrong with me that i had caused myself unnecessary stress and that he thought that was the problem. I know it could also be stress, but even though i would be happy if it were just htat, i dont think that it could all be down to stress and i feel that doctors wont even listen to me anymore.

During the initial neurologist appointment she said she didnt think it was MS but i wasnt entirely honest about the symptoms and the reason i was there was actually because of leg pain that wouldnt go away. I’ve had an MRI because of headaches and was told that there was liquid around my ear but that it wasnt anything serious and i just needed to follow up in a year.

Basically, i havent been diagnosed with anything that can explain what these symptoms are so im drawn to MS as i have had so many symtoms.

Can you please shed any light on this? I know a doctor is my best bet but im just too scared to find out what he or she will say.

Thank you for any replies. By the way, i’m 26.

5

Hi

I didn’t want to read and run. I have MS and some of your symptoms ring bells with me ( weirdly the dairy tasting like metal thing which I had no idea anyone else ever experienced). The problem with neuro is that it is very hard to DX symptoms and it could take a while to find out whats going on but my best advice is to accept - what will be will be. So for the moment I would try and make changes to help with your symptoms - reduce your work load. Limiting your nights out so you have some early nights in the week. Good pain killers.

I have had to reduce my hours at work and recognise my limitations with energy levels and actually long term it has had a really positive on my health.

Good luck xxx

6

Thank you so much for your replies guys they are really, really appreciated, I will be following the adivce of all of you! I am still in the system and going back to the Neurologist in April, sorry for the confusion.

They’re looking into PANDAS for me, unfortunatley it’s not considered an actual medical condition yet. They are reasearching it in America, but the NHS in general seem to disregard it - however my neurologist is open minded. PANDAS doesn’t seem to inclued balance issues but we’ll see! Possiblems user, I will continue our conversation in the private message if you’d like to check there :slight_smile: