Hello, newbie here. Looking for some advice from those with experience really.
Been experiencing symptoms since I was 12 (that is when i remember really starting to notice them anyway). However, My Mum tells me I complained of some things like weak/achey knees from as early as 5!
These symptoms have been building up gradually over 10+ years, however there are some periods where it is worse (such as periods of humidity/cold temps) and each day is like a pick’n’mix of combinations from this list:
Ache everywhere constantly
Cramps - shoulders, thigh, calf especially
Tingling - even tongue sometimes!?
Numbness (mostly left side) including face and top of head
Trouble balancing - often walk into things
Painful walking more than 10mins & legs/knees start giving out, meaning struggle to stand still/continue walking for long.
Weakness (knees, arms, hands) worse on left side
Head, hips, arms wobble? Tremor?
Blurred vision, achy eyes, eyes flick left
Pain down spine when head lowered
Tight band across ribs
Trouble getting words out even sometimes when i know what i want to say
Sore skin & itching but can’t see a reason for it
Sensitive to temp & changes in temp
Patches of numbness also on head & face
I had a blood test which all came back normal apart from a slightly low level of vitamin D and my doctor recommended a supplement & said this would explain all the above symptoms… Not v happy with this obviously because the symptoms are quite debilitating, not to mention the pains.
However, i have been taking Vit D supplements for years and never seen an improvement in symptoms.
My Dr is not very willing to go any further so I’m at a stand still.
Does this sound like MS to those who know? Any advice would be appreciated really…
What a list!! I’m not at all surprised you’re fed up and questioning your GP just writing your symptoms off as low vitamin D.
Having said that, there’s no way a random bunch of people (who don’t know you) can give you any answers. Especially since our only qualifications for diagnosis are ‘having MS’ (with a few exceptions - there have been one or two doctors on here & I’m not one of them).
Is there another more sympathetic doctor at your GP practice who might refer you to a neurologist, for example (assuming s/he thinks that would be the most appropriate specialism)?
Regardless of that, I believe what you really need to do is try to compile a diary of events. Rather than a long list of symptoms, try to get some detail on what you’ve experienced and when. Think back as far as you can, put dates on what happened and how long each symptom lasted. If anything is ongoing, make notes of that, or if things have got better over days, weeks or months.
If you then take this to the doctors you can ask for their help in figuring out what is happening to you. Forget what the GP has been like in the past, ask them to consider the pattern of your symptoms and refer you on. You won’t be able to take the doctor through all of your past symptoms (time constraints), but you could concentrate on what’s recurred, or what has been the most problematic.
It may be that there is a neurological cause of your problems. I’d hesitate to say it does or doesn’t sound like MS. What doctors do is rather than consider a disease or specific diagnosis and try to rule it in or out, they look at the person, think about their symptoms and maybe do a physical examination and/or blood tests. They’d then think about what part of the body might be the cause (which could be the nervous system, or a different area entirely). Once they’ve referred you to an appropriate specialist, you could be diagnosed.
As for whether it sounds like MS, who knows? We all have different presentations of MS. No two people have precisely the same symptoms. Any of us saying otherwise is just guessing and about as much use as a fortune teller for a diagnosis that’s of any value.
Hi hun, for me you have listed way too many symptoms that can belong to so many things.
the trouble is a doctor sees a list like that and immediately thinks anxious.
I would concentrate on things like
NUMBNESS DOWN LEFT SIDE, face and top of head.
weakness again left side
Patches of numbness again head and face.
I would then work out which are the worse of the rest. How often you get them, twitching can be down to lots of other things including tremor, work blindness can be anxiety, sore skin itching can be down to allergies. xx
I saw a doctor for years who just put everything down to my bad back, then I saw a junior Gp because my one was too busy and he straight away recommended me for a mri which is how I then got diagnosed with ms, so you should changed Gp and get a second opinion. I hope you find answers soon.
Get a new GP first of all and then ask to see a neurologist. Treating you for a vitamin deficiency was fine in the beginning, but there’s no excuse for him letting this drag out.
You seem to be an adult now, but let’s go back to when you first noticed these things:
Do you have more issues with your legs in hot weather and when doing a lot of walking? On those days, are you okay in the morning but then not later in the day? Like if you were okay walking to/around school for your morning classes but then your legs started getting heavy and weak in the afternoon, or you found yourself having trouble walking back home.
Were you a decent student who struggled to stay awake in your afternoon classes, but only on hot days? Did you frequently forget where you were supposed to go, walk into the right class but feel like the other students were the wrong ones, or have episodes where you found yourself in a part of the school that looked completely new to you?
Do you fall or lose your balance more when you first get out of bed and then in the evening after school or work? Do your legs trouble you when walking up steep hills? Do you ever try to lift a cup of tea and find that your arm only goes part way before it stops?
It sounds like you need to see a different GP, one who actually listens would be good. I have found that you have to make it easier for them to refer you to a specialist, rather than being hassled frequently by a person who is not being listened too. If you still get nowhere, see if you can find an affordable private neurology practice. You have more than enough symptoms to warrant further investigation. (in my unqualified opinion) Good luck.
You’ve just described my time in education perfectly!
Starting year 7 (11yo) i was very smart, doing work ahead of my years and not many symptoms other than the aching, fatigue and painful back/legs when walking.
I would just ignore it thinking I was just lazy or being pathetic haha
Every year since then it’s got worse and by the end of college i wasn’t doing as well. I struggled to take in new information, found it difficult to concentrate or remember anything including my timetable and events etc… I missed a lot of school because I constantly felt like i’d been hit by a truck!
I used to dread the 20 min walk to school because by the time i got their i was in so much pain. Not to mention walking back later after a full day.
I gradually had to stop doing all the sports i loved, badminton, horse riding, weight lifting, swimming etc because i felt weak and various pain.
I’m very much a suffer in silence kind of person so I never mentioned anything to anyone.
University was especially a struggle because it was a 20 minute walk up a massive hill. Sometimes i feel like my arms and legs do this kind of stop-and-start thing where i’ll be doing something but occasionally they’ll pause before carrying on, or it’ll be barely noticeable and just look a bit clumsy. But also occasionally i really have to concentrate.
On several occasions now i’ve been getting a mug or something out of the cupboard and didn’t even realise i’d dropped it until too late.
I wouldn’t say morning are necessarily worse than any other time of day, but usually after waking up i do have to wait a while before i can feel everything enough to stand up and step down (bed is on a platform).
The numbness is a relatively recent addition though. Maybe in the last year or two.
And yes one thing i definitely noticed is that everything is made worse in hot weather. I dread humidity because i feel the weakness and aching is heightened especially.
I’ve spent a long time doubting myself and telling myself im just lazy or that its probably nothing, so apologies if i ramble on and sound silly.
You don’t! The questions I asked are about the primary symptoms I had when I was around that age. I forgot to ask if you’ve had to stop taking really hot baths (like saunas or hot tubs) or at least use much-cooler water than you used to? Do you stay out of direct sunlight when it’s hot because it makes things worse?
I had a terrible time getting anyone to listen. The GP called it “growing pains”. My parents thought I just wanted attention. I was more than half convinced that I was either just inherently lazy or mentally ill.
Find a new doctor. Focus his attention on stiffness & weakness, problems with heat, brain fog, increasing difficulty as the day progresses. Stay away from the mention of pain in the beginning so that he doesn’t think you’re one of those people who just wants drugs.
Yes! I used to love baths. And i have a hot tub, but stopped using both. Usually because i’d get a tightness across my ribs which seemed to impact my breathing somewhat. And then i’d be so tired afterwards when they’re supposed to be relaxing haha. I even have cooler showers now because of things like that. No doubt heat makes things worse.
The opposite is also true. When it gets very cold out, i often say i feel like a glowstick. Everything clicks and snaps more and feels incredibly tight.
I speak from experience. My neurologist when i saw him said ah you havent given me a list of things wrong good, it always turns me off. He actually said that to me and explained it is much easier for people to just concentrate on the things that could or would cause them harm, like off balance, walking badly things like that. Paresthesia is quite normal in many things (odd sensations etc), and as soon as a GP will see a list full of them will jump to easy conclusion i.e. low vit D or magnesium or menopause lol. xx