Scared of MS diagnosis

[lefloose]

Hi everyone,

I know there are lots of threads on this already and I know no-one can 'help' but I just wanted to write my thoughts down. I've been experiencing some MS symptoms which came on slowly (sensations in my right hand and numbness in right foot which started in Dec 2018) and for the past week have had some more active symptoms (vision disturbances, twitchy feet, fatigue slumps, numbness in whole arm and side of head). A GP has referred me to a neurologist and did try to reassure me that it might be migraine related, but I haven't seen a catch-all migraine type that would indicate this.

Quite frankly, I'm terrified and highly anxious. I'm doing my best to stay positive but find the fatigue hits me hardest as it feels like I'm being pulled under. I know lots of people experience so much worse but this is the first time I've had a health issue and it's a shock to the system. Any positive words or experiences would be much appreciated.

xx

[AForest]

Hi, I just wanted to say you are not alone thinking like this. I have been referred to a neurologist too. I have had all sort of strange symptoms for a while but put them down to stress (going through a divorce, child with MH problems, trying to run a business) and occular migraines. My symptoms have included visual disturbance, random numbness, tingling, feelings of hot water rushing down my leg on my left side. All have been short-lived, and not interrupted my life so I never got them checked. Now however I have permanent tingling in my left hand, leg and foot, a feeling of spiders crawling up my neck, fatigue which makes me sleep for an hour every day after work, temporary confusion with words and telling the time, forgetfulness, leg and finger randomly twitching at night. Its the confusion and fatigue that are really worrying me as I can live with the tingling. I am pretty worried about it and the future as my job depends on me staying physically active. However I need to stay calm and get tested and worrying won't help the stress levels! It feels therapeutic to write it down though.

Have you had blood tests?
Sorry I haven't got a positive experience to share but wanted you to know you are not alone.

[AForest]

PS the symptoms you describe could be down to a few things, trapped nerve, disc compression, diabetes, anaemia, b12 deficiency.. so don't panic yet, I am trying not too. And if it is MS then there are plenty of positive stories out there xx

[Melonise]

I don't have MS myself but a family member does. It's good that you have been referred to a neurologist. That's often half the battle towards a diagnosis whether it is MS or not.

It will be daunting and scary. I am a volunteer for the MS Society (on a committee) so I know about the services they offer. Please please check out their website for the support line and other helpful resources. IF you receive a diagnosis of MS there will be a "Newly Diagnosed" group in your area and you'll be able to meet other people in the same position as you.

[Toddlerteaplease]

I have MS. Picked up out of the blue on an MRI scan done as part of a research study for a university. In hindsight the diagnosis made several minor symptoms that I thought were normal, fall into place. However. Its. It the end if the world. The disease modifying treatment makes a huge difference. I still work full time as a paediatric nurse on a busy ward. It is hard going at times but it's ok.

[Toddlerteaplease]

• is NOT the end of the world.

[Bluesheep8]

Diagnosed with relapsing remitting MS 20 years ago. Never been prescribed any drugs, disease is now described as behaving benignly...I am aware that my personal experience means I'm in the minority but as a pp said, it's not necessarily the end of the world. In a rush as at work

[jupiteroo]

Lefloose and Forest - are either of you taking vitamin b6 supplements? Just because even small doses can (in rare cases) bring on the symptoms you describe.

[AForest]

I'm not taking any supplements.

[swingofthings]

I've been there, twice with similar symptoms, including a lot of pins and needles. Was convinced I had MS, especially when the sight in my eye went suddenly, even a friend gp said it did look like it, but consultant didn't believe so and mri confirmed it wasn't.

This was more than 10 years ago, and I now know that these symptoms express themselves when I'm very stressed. It's happened a few more times since although not to the same extreme. Hard to bleive that stress/anxiety can have such an effect on one eye but it can.

Hope your results will come back clear.

[Bluesheep8]

Even if your results don't come back "clear" it doesn't have to be the end of the world. I saw it that nothing had actually changed when I was diagnosed, I had just become aware of the existence of something that had always been a part of me. And that's how I've always seen it since - a part of me. Nothing to be scared of or "fight". I am well aware that not everyone sees it this way but that's my experience.

[Toddlerteaplease]

@Bluesheep8 you've hit the nail on the head! Couldn't have put it better myself!

[TrickyKid]

The symptoms you described can be down to a lot of things. I had/have the same and other symptoms and have a vit D deficiency. After 4 years of going to the docs I was told I have Fybro (bassicly what they tell everyone if they can't work out what it is) Try not to think the worst.

[Bluesheep8]

toddlertea I'm a firm believer that attitude has a bearing on it. I read a lovely quote once which sums it up perfectly:
"I am not cursed by MS but blessed with the strength to accept it and carry it with me"
I know that I am very lucky and somewhat unusual in that I have never had or needed any disease modifying treatments but I do have ongoing symptoms-MS is just another part of me, albeit one that other people can't see.

[Toddlerteaplease]

@Bluesheep8 yes. Positive attitude is vital. I find that it is other people who have more of an issue with it. I got loads of comments about my attitude and some people are very over protective.
But I didn't see any point in sitting around being miserable. Life is too short for that.

[Toddlerteaplease]

And I think I've become a better and stronger person because of it.

[Bluesheep8]

toddlertea I think I'm certainly more accepting because of it. Probably too accepting of people's behaviour in life in general at times though. I haven't experienced any over protectiveness though. There are times that I need to remind people about it and that I get fatigued and need to rest but that's because they forget that I have it I think, which in many ways is what I want - ie it's an aspect of me, it's not the most important thing about me iyswim...but I can't have it all ways I guess!

[r1911]

@AForest @lefloose
Did you both find out what was causing your symptoms? Im going theough similar and really scared

Awaiting neuro appt

[lefloose]

@r1911 Hi, I don't have MS. I agree with the above replies (that I have only just seen), but it really can be a variety of things that cause these symptoms. I know it's hard not to focus on one thing and I think in retrospect MS has 'good SEO' so often comes up when you Google these types of symptoms. Hopefully your neurologist appointment is soon but bear in mind they won't be able to diagnose you at first appointment, so there will be a wait for MRIs and results. Agree with the above that a difficult diagnosis doesn't have to be the end of it all - it's an adjustment to a new way of life. Wishing you all the best but try not to stress - it really can exacerbate symptoms.

[r1911]

@lefloose thank you so much for replying!

Did you find out what was causing the symptoms? Have they resolved?

[lefloose]

@r1911 Yes I have found out and they are largely resolved - it's a bit of a long story!