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Possible diagnosis incoming - symptoms worse and Anxiety causing fake symptoms?

Hi,

First time poster. I have been having problems with tingling in my feet and hands and some muscle weakness since middle of March. My dad passed away due to MS 25 years ago and my older sister was sadly diagnosed 4 years ago. I am 34 year old male.

I paid for myself to have an MRI and last week the results came back that they have found one lesion on brain and two on spine - I have been referred to a neurologist.

I have had massive anxiety about this diagnosis (due to family med history and knowing about the condition) since my original symptoms in March and getting this confirmation from my GP that its very likely MS has pushed my anxiety in to overdrive and my symptoms have got so much worse since this. I also feel really really ill and run down which I didn’t have before the MRI results. Can stress/anxiety make a big difference with this and make things much worse?

I also have this dilemma with symptoms. As I know all of the possible symptoms its hard to know if I am actually suffering them or if its the anxiety (which I know sounds crazy)

with my symptoms and family history I am fully expecting to be diagnosed in the coming weeks/months, however I think I just need some reassurances from you lovely people that I will feel better than I do now in this limbo period - as I feel like S**t!

My sister has done really well with the condition and leads a normal and busy life which gives me hope! I have a wife, child, another child on the way, work full time and run my own business, so my biggest worry is how this will affect my life :frowning:

Hi :slight_smile: I can completely relate to what you are feeling! I am also waiting for a diagnosis and in some ways the anxiety is the worst part! I definitely feel worse when I’m more anxious - stress and anxiety has the tendency to make symptoms feel so much worse and it can be hard to decide if your symptoms are anxiety related or MS related/something else - it doesn’t make your experience any less real though and I wouldn’t describe symptoms as “fake” - everything you feel is all real to you. You aren’t crazy! I have no tips on how to deal with it (if you work out how to stop being anxious, let me know haha!!) but I just wanted to reassure you that we are in the same boat and you aren’t alone in feeling this way!

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Hello

You are quite right, being in limbo can be worse than post diagnosis. Worry and fear can also make symptoms worse, or create other symptoms.

You’ve seen from your sister that the diagnosis can be managed. That’s not to say that it’s always easy, just that once you know the worst, you can learn to deal with it.

So, give yourself a break, allow the worry some space, try to relax, it may take some time to get to the end of the testing process and get a definitive answer. If you continue in panic mode, you’ll make it worse for yourself.

You can always lean on us here. We do understand what it’s like to be worrying and waiting, for what seems like forever for appointments and tests, then results, and then more appointments.

Sue

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i worked out for myself that stress made symptoms worse. i went all out on stress removal, starting with the “friends” who always made me stressed. that was an easy one and i don’t miss them one bit. stressful situations can be managed but not removed. if you know that an upcoming situation will be stressful you can plan to minimise the stress. another helpful strategy is mindfulness meditation. i started this following a course at the ms therapy centre. i did it every day with headphones and the tape. the breathing is really calming. i no longer have the tape - i gave it to somebody who needed it. however i still do the breathing exercises. my husband knows that if i am blowing slowly on the out breath that i’m either worried or in pain.

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Thank you to all of you, I have a feeling I will be back here, to all seem so nice!

Hi Funk DJ (great username!)

I’m new here too, and experiencing really similar symptoms to yours - currently very early on in the doctor test phases and basically just waiting at this point.

Not sure about MS specifically, but anxiety definitely causes all sorts of exacerbated physical symptoms - sometimes it’s hard to tell what’s purely physical and what’s a manifestation of the anxiety! It’s interesting that when I google my MS symptoms (shaking, muscle spasms, tingly feelings) anxiety pops up quite a lot of the time. So it looks like they definitely share a couple of qualities.

The only thing getting me through my own anxieties is knowing that a diagnosis will mean I’ll hopefully be able to get some treatment/support/medication for my symptoms. Limbo of any form sucks - it’s way better knowing rather than living in the abstract.

Keep us posted on how things go. :slight_smile:

Hi, I am just looking for some advice as I am scared an MS diagnosis may be on its way.

I had a brain MRI to rule out a growth on my auditory nerve due to pulsatile tinnitus on one side. I have had a few instances of tingling in my face on the same side lasting minutes only, but seem to be brought on when I raise my arms above my head. The tinnitus has now gone away.

I had a call from the ENT consultant to say that there was no growth on the MRI, but there were some white patches that were possible demyelination but it was not his area so would be referring me to neurology.

I am terrified as to what this means and have been on Dr Google which was probably not a good idea. I have had pins and needles today that seems to be lasting ages in my arm but not sure if that is just anxiety as my pins and needles started due to resting on my arm.

I have been told it’s likely to be quite a wait before I get an appointment. How do you stay positive as I can’t help but think the worst. My husband keeps telling me there could be other reasons but I am not sure how likely this is.

Anyone else had this experience, being tested for something else and having this finding?

Thanks.

A couple of things. You father sorry he passed away. weirdly enough MS is not thought to be hereditary.

1 in 80 chance of another family member getting it.

I have a very large family and connecting family and so far so good the only one with MS.

I do have sisters and daughters who all have inherited auto immune thyroiditis, but i dont have it. My dads father had parkinsons, and my dad had lupus. My nan RA.

I paid for MRI in 2007. I was told I had a large area of high signal foci in the deep white matter of my brain, which could have been indicative of demylination but the radiologist told me and wrote it was more likely down to my age.

I finally got a diagnosis in 2016.

have you had your blood tested as tingling feet can be lack of b12 etc. Your brain is an amazing thing, it can trigger off symptoms and anxiety is the worse thing for it. Anxiety can cause tingling, and weakness too. You can be anxious about your wife having another baby as well.

My friend I lost recently was 67 she had MS and so did her brother. She was working six weeks before she died. Her brother worked too.

She had bone cancer in her spine which had been missed as the GP kept putting her backache down to her MS.

so MS can actually be kind and give you as normal a life as possible. there are a lot of meds now since you lost your dad, and a lot of MSERs are on them and slowing down progression.

I wont say DONT worry, as you are bound to worry, but try not to focus on it. It really will make you ill and stress is not good for you.

apologies this was meant to be a new post, had not realised I posted to this thread.

To all of you waiting for appointments with neurologists / tests / results / possible diagnosis.

Limbo is more than just a dance from the Caribbean, it’s the period of waiting, worrying and (often) panicking about ‘what ifs’, and ‘how can I cope’, and ‘what does this mean’!!

Randomly looking up symptoms on the Internet (aka consulting Dr Google) isn’t a very good idea. Nor in fact is comparing yourself and your symptoms with other people.

If your symptoms seem to possibly indicate MS, you can look up symptoms and information on this site, see the tab marked About MS. Or look at the MS Trust. Both sites offer reliable information and hopefully won’t set you on a course that will give you nightmares or keep you up at night biting your fingernails with worry.

Obviously you can come on here and ask us. Just be aware that there are many, many symptoms associated with MS and which are often shared with other diagnoses. Also, none of us share precisely the same symptoms, even though we may have been diagnosed with MS. Sometimes it’s described as a ‘snowflake’ disease, no two people have exactly the same MS. We are also not medically trained, we can only offer our own experience, so just as Dr Google can be relied upon, neither can individuals on this site.

What we can do though, is to empathise with you. We understand what it’s feels like to be deeply worried about what is causing your symptoms, or to have no symptoms but be told you have demyelinating spots in your brain.

The best thing you can do is to try to get your appointments speeded up, try sweet talking the appointments team at your hospital, or the neurologists secretary, or ask your GP to change your referral to ‘urgent’. Just anything you can do to attempt to make the waiting time a bit shorter.

Then try really hard to relax about what is going on with your body. Stress can indeed make existing symptoms worse, or even produce symptoms all on its own. This doesn’t make you a ‘fake’, or suffering Munchausens Syndrome, it’s a normal and natural response to worry. Caroles suggestion of Mindfulness Meditation is a good one, many people find that it helps. Sophie’s thought that a diagnosis of MS is better than living in Limbo is often also true. Once you get answers, you can then think about what comes next.

But, just be aware, some of you worried about possible MS will not have it. There are other diagnoses that mimic MS. Both neurological and otherwise. Even vitamin deficiencies can present like MS (vitamins D and B12 for eg). Other autoimmune disorders can look like MS, as well as other neurological diagnoses.

So, try not to worry. Don’t panic. What ever is wrong with you won’t be improved by stress and worry. Nor in fact will it get worse. A delay in diagnosis of MS does mean that you may be missing out on drug therapies, but there’s not much that can be done about that.

If you have physical symptoms that are really difficult to live with, see your GP and ask if there’s anything they can prescribe to help.

And we are always here to ‘talk’ to.

Sue

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