Very frustrated newbie here!!
 

Hey everyone,

I'm 18 and in my second-last year of school.
I've been having these symptoms for approximately 10 months now.
I don't have an official dx yet, but the main thing mentioned by my GP is MS, so i'm hoping I can be guided on whether or not you think it could be...

I've just had an MRI 4 weeks ago, was supposed to get the results and follow-up appointment date through letter last week, however, when I rang to check the progress today, the main reception said my consultant hasn't even written the letter yet(!!!!) and that him and his department are in lock-down :confused: :eek: Anyway, the MRI was a general one (without contrast) and Pituitary with and without contrast. I am also hypothyroid for 3 years.

I'll put my symptoms and a quick description below...

- Vision issues - the first symptom, right eye would suddenly double/blur completely to the point I couldn't complete simple tasks. Spent a day in eye casualty, various tests, all normal.
- Fatigue, to the point where I would, and still do, fall asleep. Not relieved by any amount of sleep, gets worse in the afternoon. I can't get through a single day without crashing out atleast twice.
- Balance problems/dizziness - suddenly started with this after the vision disturbances. I frequently stumble, walk into things, trip over. I'm VERY wobbly on my feet.
- Memory & Cognitive stuff - forgetting simple things I have to do, and things I need, such as being told to bring something, but I will forget it, that's really frustrating, causes so much trouble, never used to be like that. And I can no longer open things like cans and packaging, cut things, because my hands just simply can't. Also struggling to collect thoughts together, mistyping, forgetting what I'm doing. Frequently, I find myself 'absent' so to speak, like I can be doing something, then suddenly 'jump' to alertness to find I've been sitting there staring for the past 10 minutes, can't remember exactly what I was doing except staring.
- Muscle stiffness, weakness, and numbness - I get the stiffness and numbness in only one side, my right side. Hands and feet randomly go numb and tingle all the way up my arm, they also randomly cramp up. However all muscles seem to have become weak, walking long distances is difficult, even though I used to walk ALOT without any trouble, and getting up stairs, getting up off a chair, off the floor etc, is difficult. Face also goes numb, only on the right side, and mouth sometimes droops down on the right side, eyelid also looks swollen and droopy.
Emotions - feelings of 'depression' but I don't have depression, that's just the best word to describe it. I'm also really moody atm, I can shout at someone or get upset at the slightest thing.
Swallowing and speech - this is one that gets to me the most. At random times, swallowing suddenly becomes near to impossible, I need water to swallow, otherwise I just can't...speech is also different, I jumble up my words mid sentence or just can't say what I intend to say
Shaking hands and legs - doing things like writing, using a computer mouse, is difficult because of this, it seems to get worse when I'm hot.
Urinary tract infection-like symptoms - frequent urgency and urination - had endless urine tests, all come back completely normal.
IBS-like symptoms - annoying as heck, I can go 4 or 5 times one day (sorry) and completely nothing for the next few days.
Pain - alot of chest pain, several trips to A&E and ECG's for that, one ECG came back quite quick, everything else normal. Stabbing pains all over my body, cold feeling, and a prickling heat sensation especially in my lower back, stabbing in arms, legs. Just today actually, had a pain that I cannot even describe all down my right leg, causes me to become very distressed and upset.

Apologies for the long as heck post, I'm just hoping I can be taken seriously for once. Taken 3 doctors to be referred for to the neuro. My family GP practically mocks you and make you feel like a time waster.

I hope maybe someone knows where these symptoms are pointing, usually I brush off anything medical related due to the fact I don't like fuss and bother, but these are impossible to ignore as they are affecting daily life, I used to achieve high grades, but due to all the above, and all the time off caused by it, I'm slacking :(

Thank you!

dear 94

welcome to NT. i'm sorry for all you're going thru right now. do you live in the states? it doesn't sound like you do.

one thing that jumped out at me from your post was your GP. your dr should be one that listens to you and validates you, then tries to help you or refer you out to a specialist. can you get another dr?

your sx's (symptoms) do sound like they COULD be MS related but i'm not a dr and can't say. when i had my MRI i went to the place that did it and got a copy of the disc and the report. in the US it's our legal right to get our own information. you are your own best advocate so don't give up on calling your dr for this information. the squeaky wheel gets the grease as they say.

also...fyi...try to break your sentences up into smaller paragraphs. it helps some of us with eye issues to read the post more easily. thanks so much.

please keep us posted. we're here to help.

Sorry to read you are going through so much, right now. Especially, more sorry to read your age, at going through this. One of your symptoms, that sticks out to me, that I hope you can learn to have more control over is your emotions. Having micro-outbursts and shakiness, need not always be about depression. Are there changes going on around you?

Have you been tested for diabetes, etc? The frequency in needing to go frequently, can be a sign of something else.

Of course, it could all seem MS related. I am surprised they didn't do a contrast MRI.

Does sound like a specialist is in order. That, is quite and extensive list of symptoms.

Hi, thank you both for your responses, I really appreciate your help!

@NurseNancy At my local surgery you can usually request an appointment with a doctor of your choice, but they are not always available, so I do sometimes have to stick with him. However, the day I was actually referred to the neuro, the doctor I requested was free, lucky!

Unfortunately I do not live in the US, I'm from the UK, where things are generally slower medical wise. I'm not sure if we are allowed to do that here :( it's going to be worth asking though, and to see for myself.

Apologies for the writing, I noticed afterwards when reading it back it was sending my eyes a little funny :o

@GladysD Hi, thanks!

Yeah, the emotion business is responsible for quite alot of trouble between peers and myself at the minute, although I am not greatly aware of any major changes, I do get stressed easily by the smallest of things that wouldn't seem to drastic to most I know, maybe that is responsible?

Yes I had quite a few (8 in total) blood tests a couple of weeks ago, in particular checking for vitamin deficiencies, diabetes and anaemia. All came back completely normal, except concerning thyroid, TSH levels had dropped, and FT4 was in the low end of the range (normal is between 12 - 22) however I was told most commonly in hypothyroid, T4 is low, and the TSH level is high, so maybe there is something going on thyroid-wise. :confused:

I just don't know what to expect from now, it's like I'm facing a brick wall with no outcome, silly I know, but it's so frustrating :eek:

Thank you!

What jumped out at me when I read your posts was whether or not you may have a sleep disorder. It can cause many of your symptoms. A sleep study diagnoses that. People don't even know they have a sleep disorder. You don't have to be some one who snores to have one.

Welcome to NT!

Many of the symptoms you are experiencing can be related to MS but also could be related to many other things as well. MS is such a funny disease as it effects each of us differently and yet the same. For some, an MS diagnosis can take a long time and for others it doesn't take long at all. Be persistent in pursuing a diagnosis, whether it is MS or not. Something is happening to you and need to find out what and come up with a treatment plan.

I am sorry to hear your dr. is not being very supportive. I think in general drs. see a young person with complaints and don't take them seriously. :mad: When you go to the dr. do you take someone with you like your mom or dad? Sometimes having another person in the room to support what you are saying helps quite a bit.

This statement made me think of a seizure. I've had this happen and I believe others on here have as well. Absence seizures are exactly as you described. Seizures can cause some of the other symptoms you are experiencing. After these episodes do you get really tired and/or have a headache or anything?

Please keep pursuing a diagnosis and let us know how you are doing. In the meantime, ask any questions you would like as someone will always come along and have some great ideas, advice/suggestions, and support.:hug:

Welcome to NeuroTalk Mousi, nice to meet you:). So sorry for your
illness right now..:( But glad you found us. I hope you don't have
MS, but there are worse things.

It sounds to me like you need another better, more compassionate
Doc/Neuro. One who listens and delves in to find the reason for
your symptoms.

I hope you find the answers you need and are feeling better soon.:hug:

The reason I asked about a sleep study was when my neuro was investigating my fatigue a sleep study was one of the things she ordered. I do have sleep apnea and my C-Pap helps but the fatigued persisted