I wanted to ask people’s opinions on a very basic question…does anyone actually believe all these symptoms can purely be caused by stress and anxiety?? I have been an anxiety sufferer for the last 16 years following the birth of my daughter when I was 20. This was mainly panic attacks and social anxiety until 3 years ago when some physical symptoms started to show up…numbness,tingling,blurry vision,muscle pains and tremors to name but a few. Of course Dr.Google came along and so did my (in my head) ms diagnosis. I saw my gp who told me she felt my symptoms didn’t match ms but sent me to see a neurologist anyway as she could see I was very scared and also prescribed me citalopram antidepressant. Neurologist told me he felt confident it wasn’t ms but sent me for an mri to be sure,which came back clear. I was feeling better for approximately 10 minutes until I remembered that lesions don’t always show up straight away but something did click on my brain that made me get on with my life and stop worrying as my home life was starting to suffer. Fast forward to now and all the old symptoms have come back with a few added extra ones of buzzing in ears and really bad pressure feeling in my head,my scalp feels tingly and cold and I’m so dizzy I have to hold on to walk around things. My depth perception is odd and I keep walking to the right side unintentionally and walking into things. My right eye feels like I’ve got a hair in it all the time and I’m walking round terrified I have ms but can’t tell anyone as I got so upset last time. I saw my gp,a different one from last time who did a few tests with my balance and my reflexes and said she doesn’t want me to think anymore about ms and that all these feelings can be brought on by stress and anxiety. It did all flare up during the heatwave and I’m not great in hot weather so I know I was feeling anxious about that but really?? All the symptoms add up? Why can’t I get it out of my head that I have ms,it’s like a gut instinct that I can’t silence. Has anyone else had experience of thinking they have ms but it’s been anxiety? Sorry for the long post but I had to write something. Thank you for reading.
hi kat
see your gp and ask to be re-refered to neurology.
it could be anxiety as this limbo would make the calmest of people anxious.
anyway the neuro is the one you need to see.
carole x
Hello Kat
Yes I’m afraid the sorts of experience you’ve described does happen to quite a few people. And generally speaking, after they’ve sent themselves half batty with fear, worry and a sense of doom, they find that a diagnosis of MS is almost what they want.
It doesn’t mean that you’ve got no symptoms, it’s more that the symptoms aren’t attributable to a neurological disorder exactly.
Have you come across Functional Neurological Disorder in your Googling? Have a look at What Is FND - FND Hope International Many of the symptoms you have listed could be caused by FND, or by a vitamin deficiency (vitamins B12 and D can cause neurological type symptoms). Stress can also cause these sorts of problems. And the stress is magnified when you start writing about it, looking things up on the internet and feeling overlooked or ‘fobbed off’by their doctor’s.
We do get posts similarish to yours on this forum quite often and it’s heartening sometimes when people come back after some time to say they’ve got a vitamin problem, or that they’ve made some changes and the symptoms have improved, or that they’ve had some counselling and things look brighter. And sometimes people post for some time and then just disappear. I assume because they’ve had an improvement.
Best of luck. I hope you can find an answer to your symptoms. And I really do hope that it’s something easily fixable. Or at least fixable!
Sue
Thank you for your reply’s. I feel like FND is something I could relate to,the neurologist mentioned it last time but said it was pretty rare. I just find it so strange that anxiety disorders and M.S have so many similar symptoms,I guess as they both affect the nerves? It’s a really scary time and as it was so traumatic last time my family are not comfortable with me talking about ms again,they just say I haven’t got it and I need to believe it…which I would do if I could,but it’s not that easy is it. I feel a bit like an imposter on this page as I don’t have a diagnosis of M.S but I do have a very real fear that I have it. The people on this site who actually have a diagnosis seem much calmer than the people who are ‘in limbo’. Am I in limbo?? I don’t know what I am,but I know I have some weird symptoms going on which are pretty scary right now.
Hello Kat
You can describe yourself as ‘in limbo’, purely because you haven’t actually had a clear solution or answer to the symptoms you’ve been having. It does seem relatively clear that you don’t have MS, so I understand your family taking the view that you should put it out of your head, but it’s not as simple as that I don’t think.
The problem is that although you don’t have demyelinating lesions indicative of MS, you still have real symptoms. And while you have symptoms that are similar in many ways to the symptoms someone with MS would have, it’s pretty difficult to a) forget about the symptoms, and b) completely remove the idea of MS from your brain.
Certainly when you look at the FNDHope website I gave you the link for, they seem to say that FND is very common indeed. And we do have a lot of posts on this forum similar to yours. So I suspect that it is more common perhaps than your neurologist thinks.
Don’t worry too much about seeming like an imposter. We do get it, do understand your worries and aren’t going to dismiss your fears and tell you to go away!
You are quite right that often when people receive a diagnosis, it is sometimes a relief just to have an answer. But for those like me, who’ve been diagnosed a very long time ago (I’ve had MS for 21 years) yes, we are calmer, we’ve had a long while to get used to the idea!!
Sometimes people in situations like yours find that counselling helps. You could see your GP and ask to be referred perhaps?
Sue
I think counselling is something I will pursue,I’m actually on holiday at the moment and whatever I do I just cannot enjoy myself. . The worry is driving me crazy and I’m trying so so hard to stay positive and keep smiling for my children but I know there is something wrong,I’ve been back to the doctors and received yet another ‘anxiety’diagnosis although she did knock my reflexes with something and said they were pronounced which is common for someone with anxiety like me. We are sightseeing and I’m struggling just to stand at times as my legs feel so wobbly,like an internal shake that no one can see,I’m exhausted and keep needing to sit down. Last night I started to feel a little more relaxed and felt my muscles unraveling round my neck slightly,like I was finally starting to relax and then when I went I bed I just couldn’t sleep,I drifted off around 3am and then woke up to a weird numb patch under my right rib,it’s not numb to touch just feels odd. It’s a sensation I have had before the last time I felt like this a few years ago. It’s scary,I can put most things down to anxiety but a numb patch under my rib I just can’t. I know I have ms. Did anyone else just know before you were even diagnosed? I keep telling myself to enjoy this holiday and even if I do have it I can’t do anything about it but I feel so out of control and just not taken seriously. A lot of my symptoms occur when I wake up if I’ve been lying on my right side. Like the numb arm feeling you get when you’ve slept in an odd position. It will shake off but the weird sensation can last all day. Is this under rib feeling an ms symptom? It started off as numb and now it’s feeling cold and prickly almost. I’m not googling anything anymore but I am worried about this one. Not sure this can be passed off as anxiety.
Hi again Kat
I think following up some counselling after you’re back from your holiday would be an excellent plan.
You know, it’s really extremely rare that someone with a physical examination that doesn’t make a neurologist consider that MS is likely, plus a negative MRI, has MS.
You’ve had two GPs and one neurologist tell you that it doesn’t present physically as though you have MS. Also an MRI that didn’t show up any demyelinating lesions. That tells me that it’s not MS. Obviously you could (if you could afford it) try for a private appointment with another neurologist, or persuade your GP to rerefer you to neurology (although I doubt that they’d be very keen on so doing).
When you were given a prescription for Citalopram, did you take them? And did they help? If not, then perhaps your GP could give you a different antidepressant as well as a referral to a counsellor.
Meanwhile, try to relax. I don’t think that ‘just knowing’ you have MS in the face of evidence that you don’t is likely to provide a diagnosis. And I know I’m not a doctor, but you don’t seem to believe the doctors you do see, so why not think about what might help you to believe what the doctors have told you? Have you seen a copy of the letter sent by the neurologist to your GP? If not, ask the neurologists secretary to send you a copy, or ask your GP if that’s easier. Would seeing it in writing help?
Do try to put MS out of your mind, even if it’s just while you’re on holiday.
Sue
Just read this back and realised how crazed I sound!! I’m so sorry. Thank you for your reply and I am going to take your advice and definitely seek some counselling when I’m back home next week. Until then it’s time to enjoy time with my children and family and stop driving everyone so mad with my worries. Anxiety is bloody horrible and I think not being able to see any physical symptoms yet feel them so strongly is Half the problem.
Thank you for the reply,and sorry for sounding so neurotic!!
You don’t sound neurotic. Or crazed. You just sound like a woman who has weird physical symptoms and can’t rid her mind of the thought of a diagnosis that realistically she knows is impossible.
Don’t replace fear and worry about MS with fear and worry about your mental health!!
Sue x