Fed up. Possible MS?

[Mumma02]

I'm so fed up. I've posted a few times and usually get told it's probably anxiety but since having my second child 18 months ago I've not felt well. I've been diagnosed with an overactive bladder during that time and coupled with the fact that I've experienced pins and needles/vibrating in my hands (mainly left and constant today), constant headaches, blurry vision and unusual thump in my right ear (too infrequent to be heartbeat), I've now spent the day researching MS and I'm so scared it's that.

Symptoms I've had which have not all been constant:
Pins and needles/tingling/vibrating in arms/hands/feet
One sided headaches for a long time which I now experience right at the top of my head (crown area)
Blurry vision at a distance (Was perscribed glasses before Christmas and vision is ok when wearing them but feel it's got worse as don't remember it being blurred without them)
Overactive bladder which comes and goes
Freezing cold hands and feet (now have to wear layers to bed!)
Heart palpitations
Weird thump/vibrating sensation in one ear
IBS symptoms (lots of wind!!)
Air hunger/feel like I cant get enough air in my lungs
Weakness in arms/legs
Funny turns where I feel like I'm not here and can't concentrate properly - maybe brain fog?
Probably more but there's so many to remember!

Had brain MRI which was reported as "normal" as was worried I had a brain tumor after constant strange headaches! Not Spine though so doesn't rule out MS.

Had nerve conduction tests to check for carpal tunnel - normal

Had eyetest/photos of backs of eyes - normal

Tested for coeliac disease - normal

Full blood count - specically asked for ferritin and thyroid levels this week. Ferritin 14 and thyroid 1.38. Need to speak to gp next week.

Honestly...what is wrong with me?

I had a lot of those symptoms when my ferritin was 13 - air hunger, breathless, palpitations, IBS flare ups, cold extremities. I didn’t realise how bad I was until I was treated! I have endometriosis which seems to be the cause of the drop. It’s remained stable since I had a 3 month course of iron tablets.

I would push for iron supplements, don’t be fobbed off. I would also ask for a neurology review. It’s encouraging that your MRI was normal but I do think it needs more investigating.

Ferritin at 14 is way too low. Mine was 9 and I could barely function.

It needs to be at least 50 ideally. It might not explain everything but it's a definite starting point.

It took me 2-3 months of prescription strength iron tablets three times a day to get back to normal so do persevere with it.

The iron reference ranges in the U.K. are a joke.

I would carry on pushing for tests in your position. Over the years I’ve had all those symptoms and others, I’ve had lots of investigations and my diagnosis after ruling other things out is Fibromyalgia. So it might be worth you looking at the symptoms of Fibromyalgia to see if that fits. Have you got a supportive GP? I would keep trying different ones until you’re happy with one.

I have MS and have a few of those symptoms. But not all of them. It's reassuring that your head scan is clear. Though it doesn't rule out spinal involvement, it's probably less likely. If it is MS it's really not the end of the world..

How are your periods?

I get a lot of these symptoms. My ferritin was 6 and now is 10 as take iron twice daily.

But for someone with extremely heavy periods that last 2 weeks I struggle with my low ferritin causing symptoms.

Although 'normal range' of ferritin is stated between 12-250 it's documented in various medical literature that for a menstruating woman ideally it should be above 30 and some sources say above 75 is required to feel fully healthy and symptom free.

Thanks for all your replies. I'm so fed up of worrying all the time. @toddlerteaplease can I ask what your symptoms were and how you were diagnosed? The neurologist did a basic test with me, strength/balance etc and said there and then it wasn't MS but now I think how does he know?! My main concern at the time was a brain tumor because of the constant headaches so I didn't really ask many questions about the MS side of things.

@itsgettingwierd my periods are regular and quite heavy which is what they've put the ferritin down to.

I was diagnosed after an MRI scan I did as a healthy volunteer for a research study. I had absolutely no idea.
The thinks like the vibrations fingers etc, and the fatigue, I thought was normal! But with hindsight clearly wasn't.
I'm glad it happened that way, as when it did cause an issue about 18 months later, I knew who to contact.

@DDIJ no, I've literally just stopped taking the pill to see if it helped the constant periods - I knew when they returned they would be heavy again.

@Toddlerteaplease thank you for replying. I'm so sorry that you do have a diagnosis but you seem to handle it well. My sister in law has MS and the most severe type which meant she was quickly confined to a wheelchair without the use of her hands and with a colostomy bag and cathetar. Can't even feed herself. You can understand my worry.

I still work full time as a nurse on a busy ward. Flare ups usually last about 6 weeks, thought I haven't had a proper relapse in years as I had the best treatment available.

OP, I have MS and have some of the symptoms you are experiencing (tingling, vibrations, weakness). One of the things that leads to a diagnosis is if you have discrete episodes of symptoms. For example, a few days of numbness that then goes away, or tingling that resolves after a few weeks. For progressive MS (like your SIL has, it's different) but it doesn't sound like you are getting worse, just that you have lots of symptoms all the time. Your MRI is clear, so that's really good news. I would explore the ferritin thing more before panicking about MS.
And also, be aware that if you did have something like MS there are a lot of effective treatments now (things are very different from 20 years or even 10 years ago), so people often lead very normal lives with MS. It's not an automatic wheelchair scenario (sadly it is for some, but not as many as the internet might lead you to believe).

Thank you @Wellthatsit I did have all these symptoms before Christmas until the end of January and then they seemed to go away but now they've come back which is making me worried. You sound like you deal with it well.

For those of you who have MS, do you mind explaining how your symptoms started and how you were diagnosed? Thank you.

Hi OP. My first symptom was a numb torso, for a few weeks. Then 3 months later, tingling in fingers of one hand, followed by the same on my foot (same side), then the other foot and then hand joined in. I also had L'Hermittes syndrome and a kind of heavy feeling in my head. My legs would get a clammy sensation when I walked and then when I stopped, lots of tingling, pins and needles type feelings, (which I still get now). This episode lasted about six - nine months, but then died down. I felt a little light headed too. The neurologist told me it was MS before I even had an MRI, based on the symptoms, especially the clammy legs and the l'Hermittes. The MRI confirmed it. I could do all the standard neurological tests quite well, like walking toe to toe etc, and touching my nose then their finger quickly etc.

I should have said that my GP listened and referred me. I had gone to her with the numb torso honking it might be shingles. She wasn't convinced, but when I went back with new symptoms, having waited several weeks to see if they would subside themselves, and reminded her of the numb episode, she agreed it needed looking into more. It took about 3 months before I saw the neurologist.

@Mumma02 have you ever had your b12 levels checked? Air hunger, pins and needles/numbness, palpitations are all really classic symptoms of b12 deficiency. It's used in the production of myelin which coats your nerves so can result in lots of nervous system related symptoms.

It isn't necessarily MS. Lots of things could present your symptoms.

I was diagnosed because I started getting fits. Had a CT scan to rule out a stroke (which was ruled out). They had a spare MRI spot the same day and offered it to me. Was told it was probable MS the same day and refered to a Neurologist to confirm.

Apparently one of the lesions caused the epilepsy.

Really hope you get some answers. Keep pushing your GP.

@Mumma02 sorry you’re so unwell.
The air hunger thing you described- reminded me of what I have - postural tachycardia syndrome (POTS) which is a form of autonomic dysfunction where your body doesn’t respond to standing up and blood pools in lower limbs leading to a rising heart rate and brain fog / disordered breathing and air hunger

I also have pains in hands feet and everywhere really - POTS comes with Ehlers Danlos syndrome (EDS) - weak collagen affects so much- including bladder / bowel. Systemic bladder infections can arise, I have had these and feel so unwell.
And also an overactive immune system leading to lots of reactions to foods and other things - mast cell activation syndrome.
The three syndromes often sit together.
Hope this is useful - good luck xxx

Thanks so much for all of your replies. I had my B12 and Vit D tested before Christmas as my request when this all started. Vit was 50 but no idea about B12 other than told it was "well within range." @Namechange600 I did look up POTs as I've had a few episodes where I've felt like I was going to faint but it's always been when I'm sitting down. I would love to just feel back to normal again!

No worries! I think even getting symptoms sitting up can be othostatic intolerance as gravity still acting on the upper half of your body. Best of luck @Mumma02 I have many chronic health conditions and it has been a struggle to be diagnosed and then manage them on top of everything else xx

@Mumma02 how Arw you now ? What was the outcome ? X

@Starrr123 the outcome of all this has actually been PoTS but wider symptoms come under autonomic dysfunction. Still really new to me but glad to have an answer because I knew it wasn't all in my head.

@Mumma02 i bet it is! Is that to do with your heart? Also that thump in ur ear is it constantly ? Xx

Glad you're diagnosed. Not knowing is awful. Best wishes.

@Starrr123 comes and goes but pretty sure it's to do with neck muscles and being tense sometimes. It's not actually a heart condition, my heart is healthy...it's a dysfunction of the nervous system so the signals don't work properly when changing position and blood isn't transported correctly which makes your heart beat faster when standing.