In desperate need of advice/opinions

Everyday living
1

Okay, so I am an 18 year old female and for the past 2ish years, I’ve experienced various issues which have lead me to think I may have MS.

I get a pins and needles feeling over my back that comes and goes that varies in specific location but is usually over my shoulder blades (I’ve read that pins and needles in the lower back is common in MS but I havent seen anything about upper). I also get pins and needles on my head, usually around the crown of my head/ scalp or over one side of my face (I don’t recall it ever being over my whole face). I’ve gotten used to this now so I’m not sure how frequent this is but it is daily and each burst lasts about a minute.

I’ve also noticed that I have spasms and difficulty moving and controlling my arm and hand movements (most noticeably in my left hand). For example, I will be holding my phone in my hand and involuntarily launch it across the room, when it happens people comment and say that it looks like I’ve just raged out and chucked it. I am a guitarist and fortunately this doesnt interfere with my playing too much at the moment but sometimes I’ll be telling my hand to move or change position but theres a delay, it’s like its paralysed for a moment.

My balance and depth perception have gotten quite poor but I’ve only noticed as of the past year or so. I find my self falling into walls, walking against walls to balance, stumbling when walking and stumbling when going to stand up. I also noticed this week that I went to grab a door handle, totally missed it and nearly fell over.

After doing some research into MS I also found that some of my bladder issues that I’ve always taken as being a random bodily quirk might have some weight. I pee about once an hour, usually with an urgent need to go and often struggle to actually start peeing once I get there. So much so that friends and family comment on the frequency. I was once in the staff toilets at work with a work friend and she commented on how I wasnt going and then when I did, I stopped and started. So its not just me noticing haha.

These are just a few of the specifics that are most prominent for me at the moment but going through the list of MS symptoms, I can check off over half.

My concern is that even though people my age do have MS, its not that common so is it possible I have it? I also have a history of mental illness and eating disorders and I’m wondering whether these symptoms are caused by the paranoia/delusional aspect of my illness or damage from my ED (I’ve been in recovery for 2 years, coincidentally the amount of time I’ve experienced symptoms).

I know its better to be safe than sorry but due to the mental illness, I have a distrust and paranoia surrounding doctors (wouldn’t call it a fear) so I want to arm myself with facts and knowledge before I talk to any professionals. I’m also in a sticky situation of not being able to talk to friends or family, or anyone in my life really, about my concerns. I could just really use the advice of people with MS at the moment. I’ve brought this up with my therapist and she didnt really give me a straight forward answer (she rarely does).

Are my concerns valid? Did anyone else experience these symptoms to begin with? Or does anyone know of any other condition this could be if not MS or my existing conditions?

2

Hello

Like/trust them or not, it sounds to me that you need to see a doctor. Initially see your GP who can then refer you to whoever they consider to be the best specialist for you.

Looking up specific symptoms about a given disease and fitting your symptoms into that is not generally the way doctors diagnose disease. For this reason, we generally advise people to avoid googling their symptoms. It’s a bit like putting the cart before the horse, so to speak.

It could be that you have a neurological disorder, possibly even MS. But there is absolutely no way of judging that from a list of symptoms. It is more likely in fact that you don’t have MS than that you do. There are a list of disorders as long as your arm that share symptoms with MS, ranging from vitamin deficiencies to other neurological disorders and on to other autoimmune diseases and even ME or CFS. (As well as many other diagnoses.)

What I would suggest is that you see your GP, take along a list of the things you feel are connected and see what s/he thinks. If the GP considers it likely to be a neurological disorder, they will refer you to a neurologist.

A neurologist would then do a physical examination, not specifically to look for MS, but to establish what could be causing your symptoms. And if at that point s/he thinks it required, they would refer you for tests.

Doctors generally don’t start with a diagnosis and try to decide if you do or don’t have that, they begin with your symptoms, a history of what’s happened and a physical examination and determine from there what they think could be the cause.

I understand that you are generally distrustful of doctors, but honestly, we can’t possibly advise you. Just because we in the main do have MS, the fact of your symptoms maybe matching up with some of ours is irrelevant. Simply put, only a doctor can help.

I wish you well in your search for what is causing your symptoms.

Sue

3

Hi,

You came across as an intelligent woman and have articulated your concerns very well. I agree with Sue in that you should try to put your (understandable) distrust in doctors behind you and grasp nettle.

If you explain your symptoms as clearly as you have done here, then there I can see no reason why your worries should be dismissed. If you’re not confident with your current GP change to another one. Ask a friend who they would recommend. And let us know how you get on.

Best wishes,

Anthony

1 Like
4

I agree with Anthony, change your GP if you don’t have confidence in them.

Ms is actually quite rare so the chances very much are that you haven’t got it.

For most its a long process before they get to a diagnosis of Ms with lots of ruling out of other possible causes for symptoms.It always surprises me that people even get to the possibility of ms themselves without that suggestion by a medical professional. My wife was hit by a quite severe sudden attack which left her quite disabled by complete lhs numbness one morning but with hindsight there were other symptoms which we put down to effects of medication for another injury or that she kept to herself.Everything did kind of add up when the gp she visited asked if there was ms in family,but it never crossed our minds at all till then.We were completely in the dark as to what it could be,maybe we were both a bit thick medically speaking.!

Even with such obvious symptoms i think the Gp took blood test on that day to rule out (i think from memory) a vit b deficiency as all the MS type symptoms she displayed could be explained by that,so with your previous ED that could be a possibility? See a good gp with your symptoms and let them see what they think and go from there, hopefully theres an obvious easy fix but if not be prepared to be patient and probably visit several times,try not to get too stressed(easier said than done i know)

All the best

Ollie

1 Like
5

my daughter suffered with a lot of what you describe. it turned out she had a genetic fault in her neck one of the discs is faulty. she will eventually need an operation at the moment its just wait and see.

I think you have to see your Gp. I realise you have mental health issues can you not talk to a member of the MHTeam and ask for their advise.

I can give you 2 more diseases. Look up Fibromylgia and M.E. and you will find that all your symptoms match them as well.

anxiety can actually conjure up symptoms.

You have been brave enough to come on here and ask for help now you need to be brave enough to talk to someone who can really help you. xxx good luck. xx

1 Like