It's MS, I know it is...

[DanniDaniDanni]

Hi all,

I'd really appreciate some advice as I am 110% convinced that I have MS, I see no other possible explanation. I'm a 25 year old female, so higher risk simply because of my gender and MS is most often diagnosed in those aged 20-30.

A week ago I started experiencing random pins and needles in both my hands and feet that radiates up my lower legs, with almost an electric shock feeling on the soles of my feet. The tingling tends to disappear once I'm up and moving and feels worse at night. My left leg feels a bit numb at night but I do tend to sleep on this side. I also have pain in the back of my neck near my spine, my left outer thigh and back of my legs, plus night sweats, general joint pain and eye floaters (I've always had these). I Googled my symptoms and surprise surprise, MS popped up!!!

Now I will admit that the week before I'd had a extreme health anxiety induced period after a few of my family members caught COVID (I didn't thankfully) but the constant testing made me feel seriously stressed and mimicked a lot of COVID symptoms. I was also worrying about having an autoimmune disease like lupus after googling muscle aches and fatigue but thankfully my ANA blood test came back negative.

I went to visit a doctor today (not my GP) and one of the first questions he asked was "is there any history of neurological disorders in your family"? To which I replied no but immediately started panicking. I questioned him about MS specifically and he said that although unlikely MS symptoms often come and go as flare ups, so it's worth speaking to my GP.

He also suggested I have vitamin B12 and folate blood tests as these deficiencies can mimic these symptoms, however I had these done at the end of November. Although my vitamin B12 was quite low at 221, it wasn't deficiency level. I should add I am Vitamin D deficient (levels at 29) but have received mixed medical advice on whether this can cause tingling! This has also scared me as I've read vitamin D deficiency can cause MS/ is common in MS patients.

Since then I haven't been able to get MS out of my mind and am convinced I have it, plus my symptoms felt much worse throughout the day. I can't see it being anything else. 😔 I truly believe my life is over, especially as I've read on average those with MS live 5-10 years less than others. I honestly can vision myself in a wheelchair being unable to speak.

I read a lot about the physical symptoms of anxiety being very similar to MS but I feel like these aren't my usual physical anxiety symptoms?

My health anxiety has been with me since 13 years old but has been MUCH worse since I had my gallbladder removed in August this year. I haven't felt fully myself since as the gallstone caused me to lose 2 stone in 3 months and I was only living off of rice, potatoes, bread and soup during this time, about 500 calories a day. I was also bed bound for most of this time other than trips to A&E. Since then my Googling has become much more frequent and I honestly believe I'm dying on a daily basis from something.

My anxiety riddled brain is thinking "if I was right about there being something wrong then (my gallbladder), what else will I be right about"? I spend so much time researching MS forums and a lot of the symptoms I'm experiencing have been listed by people who were diagnosed with it.

I'd really appreciate some advice as I've been told being referred to a neurologist and receiving an MS diagnosis can take months and how horrific the tests are. I really don't know if I can cope that long, I've already started to completely break apart over it. 😥

[JulieJay92]

have bloods done, i had the same symptoms for 2 plus years and they have noticed i suffer low magnesium, potassium & calcium due to my ibs xx

[sleepless65]

I went through a period of this ,felt like someone was sticking a needle in my big toe,and pins and needle and strange sensation in feet. It went away though.Combination of anxiety and stress and maybe being run down? Try and stay off Google it is the worst thing you can do as you will just worry more.

[DanniDaniDanni]

Thanks for your reply. xx I don't suffer from IBS so maybe these deficiencies are unlikely?

[DanniDaniDanni]

Thanks for your reply. I am suffering from a bad cold so maybe I am run down.

I noticed last night that whilst lying in bed my entire left side almost felt numb, can this be caused by lying on it? I also felt numbness and tingling in my pinky finger. I really can't see it being anything but MS. 😥

[BlueIris]

Are you aware that health anxiety causes you to think irrationally?

[sleepless65]

I understand that anxiety can cause all kinds of tingle sensations, and if you are hyper-focusing on body sensations that doesn't help you are just waiting for next thing to crop up and stress about it. I think if you are anxious it needs to find an outlet somewhere. I get a numb tingle feeling sometimes in edges of pinky finger of both hands, also was getting weird sensation of water dripping on feet and legs(bizarre). You have taken best course of action and discussed with doc although sounds like you are catastrophising (I do this all the time and always go to worst case !!). I had a vit D deficiency and was given big prescription dose to get it up - and now take a supplement daily, maybe that will help.

[DanniDaniDanni]

Oh absolutely, I've had it since I was 13. Trying to remember each time I've thought I've had a serious illness I've been wrong but the anxiety always creeps back in with the "what if I'm right this time"...

[DanniDaniDanni]

Thanks for your reply! Agreed, I almost feel like I can feel every heartbeat in my body cos I'm so tuned in to it. Even though I tell myself to stop thinking about the tingling, that is still thinking about it!

[sleepless65]

I have been a worrier my whole life . I am aware of being anxious about my body and health at 5 or 6 years old, this was 50 years ago. "what if im right this time"..i have spent years worrying and catastrophising about tomorrow none of us knows what's round the corner so why let worry ruin your life today? so much easier said than done though when you have no control over it, wish i had an easy answer to stop mind racing . Im working through a CBT course on anxiety and I can see how this might help with unhelpful thoughts. Im probably last person to offer advice though considering states I work myself into.

[WorryRaptor]

Sorry to hear you're going through so much anxiety about this. I hope your doctors find a solution for you.

One thing I wanted to mention regarding MS, is that that symptoms associated with it can have hundreds of other causes. That's likely why a lot of us on here jump to it as a conclusion when we get numbness and tingling. Google will throw it up as the first option simply because of the keywords we use to search our symptoms. The real cause could be something entirely different. Like somebody else mentioned, deficiencies can cause those symptoms too, as can many other benign things :)

[kyllikki]

hi there

B12 absorption issues aren't always easy to detect; you number is just a bit lower than mine and I was still suggested to supplement. I have had similar issues to the symptoms you describe in the past, too -- tingling, buzzing, numbness, pain. Plus blurry vision, shortness of breath, cold hands and feet.
All fixed by figuring out what to supplement with (under medical advice.)

Honestly... if you hyper focus / look for neurological bodily sensations, your body has a way of producing them. Perhaps because your brain, the bit that's doing the "looking," is part of the system it is "looking" at! :shades:

At any rate, MS is not anywhere near the death sentence you seem to think it is. Of the four people I know who have it, only one has mobility issues... and I'm talking about people here whose ages range 45-70.
And this is your WORST case scenario!

I think you are going to be just fine, and I really mean that. Best wishes.

[DanniDaniDanni]

Wow I'm so sorry you've dealt with health anxiety for so long. 😔 I agree, we spend so much of our lives thinking the worst is going to happen that we don't realise how much time we've actually wasted. I know this but the health anxiety always seems to creep back in. I hope your CBT course works for you, I'm currently looking into CBT myself!

[DanniDaniDanni]

Thanks for your reply! 😊 The irony is I've actually worked in search engine optimisation (SEO) so completely understand how Google searches work, yet I always let the health anxiety tell me that Dr. Google is right!

[DanniDaniDanni]

Hello, thanks for your message! 😊 Oh really? That's interesting, my B12 was tested on 30th November 2021, which is when I found out it was 225 - is this enough time for it to drop further?

I definitely think I could have a range of vitamin deficiencies since my gallbladder removal as I wasn't eating more than 500 calories for 3 months, plus I was bed bound. I wasn't eating harshly any foods rich in B12 (milk, cheese and eggs) because they'd cause a gallbladder attack, plus I've been vegetarian for about 5 years now so don't get any from meat. I'm currently on an iron supplement that I bought from a health foods store so I'm going to assume this might not be enough of a dosage to make a difference if I am borderline B12 deficiency?

There's also a lot of evidence to show how a lack of a gallbladder can cause deficiencies in a lot of fat soluble vitamins.

Annoyingly I feel like cuts with the NHS will mean that they'd be unlikely to run lots of blood tests to solve this but I'll definitely try and push my GP to do them. I had to pay for my vitamin D blood test privately because my GP said "if your calcium levels are normal so will your vitamin D be" which wasn't the case at all, mine was at 29!

Thanks for the info about MS too, that's helped me realise it wouldn't be the end of my life if I did have it, even though it's unlikely. 😊

[WorryRaptor]

Thanks for your reply!  The irony is I've actually worked in search engine optimisation (SEO) so completely understand how Google searches work, yet I always let the health anxiety tell me that Dr. Google is right!

Same here, yet I always seem to forget when I'm caught up in a worry. Irony could be my middle name at this point!:hugs:

Just to add to my previous post, I know a few people with MS, and for many of them, it has only mildly impacted their lives. They're more active and healthy than their partners!

Deficiencies can be sneaky, and like you say about the NHS cuts etc, they do tend to be reluctant to do any "deep dives" past the general blood checks. However if you have numbness and other symptoms that indicate any neurological issues, they are likely to check your B12 and folate levels as standard. They did this with me before referring me to neurology.

200-300 B12 is considered borderline low in many countries. I'm not sure why they don't seem to treat it here until its below 200. Mine is 233 and according to my GP that's perfectly normal.

[DanniDaniDanni]

If you don't mind me asking, did your neurology appointment discover anything, what kind of tests did they run? Obviously don't have to tell me if you'd rather not. :)

That's good to hear, I think I need to remember that MS is 1. Rare, it's likely to be some other neurological issue and 2. It isn't the death sentence I seem to think it is.

[WorryRaptor]

If you don't mind me asking, did your neurology appointment discover anything, what kind of tests did they run? Obviously don't have to tell me if you'd rather not. :)

That's good to hear, I think I need to remember that MS is 1. Rare, it's likely to be some other neurological issue and 2. It isn't the death sentence I seem to think it is.

No problem at all :) I'm actually still waiting to see the new neuro at the moment. It's for symptoms that have become increasingly worse, and I saw a neuro previously for it. They ran a brain and neck MRI and did things like reflex tests, eye exams and tested my balance and co-ordination. They're going to run the same tests again to make sure I don't have spinal compression from neck instability (this is SUPER rare too I just have really bad hypermobility in my joints). Ironically, they're ruling MS out too, but even with clinical loss of sensation, and actual observable loss of balance, they're 99.9% sure it isn't MS. Just goes to show how rare it is!

[NGC253]

Did all these symptoms end up going away?