I'm scared: I am really scared that I... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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I'm scared

kylie96 profile image
14 Replies

I am really scared that I may have MS. I'm a 19 yr old female. My symptoms started last year. I've always been a anxious person but, I felt funny symptoms like feeling really unbalanced, and dizzy, spasms, jerks, tremors(mainly in my hands), And a weird flare like light in the corner of my left eye. Now I feel a bad pain pretty much all over my body, really bad in the back of my head and upper back... My arms get really tired holding up stuff and really sore arms. At first my doctor thought anxiety. But I went back and she said that my left leg the reflexes weren't as good as my right. I have an appointment with a neuro and I'm petrified! I'm really hope for the best but, I have my doubts. Could it be anxiety or maybe depression? I had blood(twice.) done and an x-ray and an MRI came back good...should I be worried?

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kylie96
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14 Replies

Hi. Whatever the outcome, you will survive. You may find that it's all anxiety, or there might be something more serious to deal with. Whatever, just deal with one thing at a time. I had a lot of those symptoms 20 years ago, and a lot were related to a significant gluten sensitivity that doesn’t show up on repeated blood tests, a severe magnesium deficiency and vitamin B12 issues. Once I sorted those out, most of my symptoms settled down for many years.

I now take anything from 3 to 8 huge magnesium tablets a day, or equivalents in the form of magnesium oil/lotion, or epsom salts baths (so it gets absorbed through the skin). That alone gave me back my strength and control of my muscles and most of my MS symptoms. Whenever I feel a cramp, twitch or weakness happening, I immediately take another tablet. Dr told me that i would know when i had had enough when i got diarrhoea, as the body expels what it doesn’t need, so just back off a little bit. That's how i manage my dose.

Check out neurosymptoms.org - excellent resource. also fndhope.org

Any counselling assistance you can get to help you reduce your anxiety is also good. My physical symptoms of anxiety were too great to be managed with psychological help alone so dr put me onto Clonidine and Physiotens, both of which calmed my overactive autonomic nervous sytem so life is tolerable. I can't tolerate many meds designed to increase serotonin levels e.g. SSRIs as they give me massive muscle problems and seizures, jaw clamping etc. Had to stop them. Also can't take anti-seizure meds.

Hope you find answers soon, but be patient while you wait for them.

kylie96 profile image
kylie96 in reply toVivienneWaterworth

I almost missed you're comment! I wasn't expecting so many reply's . You really put my mind at ease thank you so very much! I'll try to be patient. Now I was just hoping that, he doesn't think that I'm crazy or a hypochondriac!

Goneautomatic14 profile image
Goneautomatic14

It's understandable that you are scared but try to stay strong whilst you wait for your neuro appt. Write questions down before you go to the appointment as you may forget when you are there.

As Vivienne says, check out the websites as they hold so much information. Once I read up on FND I realised that the diagnosis was pretty spot on. FND does present like MS.

Also, counselling /CBT could be helpful so don't dismiss it if offered. Best of luck to you and a virtual hug x

kylie96 profile image
kylie96 in reply toGoneautomatic14

Thanks I feel ALOT better. I'll do that.

Chariots profile image
Chariots

even if it is MS (& there a lot of other things it could be) you will cope and you will just have to adapt your life around it. I have FND which places me in the 10% who can't be diagnosed with MS as it didn't show up on the tests for MS. I have symptoms of MS and Parkinson's and these began many years before I set up in business but up until recently I ran a successful business for 20 years in a very physical outdoor job. Yes it was hard and sometimes frustrating but I found different ways round things so I could manage. Of course I don't work now because over the years it has got worse to the point where any work would be impossible but even now I think it could be a lot worse.

So even if you get the results of MS please remember there are a lot of people worse off than yourself and get on with it with dignity. You can do this! But don't worry until you have to, if you google physical symptoms of anxiety and depression you will see a lot of your symptoms in that too and if you google your symptoms you will come up with many treatable conditions that aren't MS so please try not to worry about any possible diagnosis. Also whatever is wrong there are lots of treatment plans and medication nowadays is very good and will help you immensely.

Please accept help offered and push for as much help as possible, it will make your life a bit easier. Nowadays there is so much of it around so you won't have to struggle like I and others in the same situation had to. I eventually was sent for CBT for the anxiety and depression and there is NHS access to a neuropsychologist who can help you come to terms with a diagnosis so ask for this help as soon as you have any results if it is neurological.

I hope this helps and please know you are in my thoughts and I wish you the best possible outcome. You will of course get lots of support here too.

kylie96 profile image
kylie96 in reply toChariots

Thanks I guess I was just scared... I've been so stressed about it.

kylie96 profile image
kylie96 in reply tokylie96

Thanks again I just reread you're comment . you'll be in my thoughts too!

kmvalade profile image
kmvalade

I went through all that this summer. It takes a lot to diagnose MS. If you have a spinal tap that will tell you. I had my brain MRI and they found lesions but none on my spine. So we keep checking with MRIs. She gave me lots of meds that helped with a lot of the symptoms. My bladder quit working and I just went from a foley Catheter to a supra pubic catheter. Find a good neurologist and they can help you manage your symptoms. It is what it is. Take a day at a time and it will get better. It is scary but is that how you want to live your life? Be strong and know you've got this. Don't let it get you. Symptoms can be managed. Best to you in this journey.

kylie96 profile image
kylie96 in reply tokmvalade

You're absolutely right. I live with my mother and she hasn't really been all that supportive... Thank you for reply<3 I really hope that I'll be as strong as you.

Lawley3 profile image
Lawley3

Your symptoms sound so much like mine, I too have the heavy achy feeling in my arms when holding anything up and tremors in my hands, spasms and the dizzy off balance feeling daily. I initially was told it was all stress and anxiety after all my tests came back clear but then my left side became weak among other symptoms and I was diagnosed with fnd last year whilst pregnant with my daughter. It's been a tough couple of years especially with young children to care for also (I have 3). But I am somehow managing. You will get through this because we are all strong (I never used to think I was but living with this we learn to be). You msy have something completely different and it may just take some medication or physio etc to help you. Wait to see your neurologist and they will help get things sorted for you.

Be strong, take care and best wishes to you.

kylie96 profile image
kylie96

Thank you so much! I was just afraid of the worst possible outcome. I have a little girl and, a little boy so I understand. Thank you for you're kind words I pray for the best for you and you're family.

Lawley3 profile image
Lawley3 in reply tokylie96

Thank you Kylie, keep us posted with how you get on. It is hard when we have young children to care for as well as ourselves because they are relying on us to do everything for them. I wish you the best of luck, take care.

Missclc profile image
Missclc

Ah bless u do not panic , make sure have an understanding doctor and explain how u feel , it's good that your MRI came back good , if they suspect ms they will do a cat scan as I have been thro his since 2012 . Neuro are brilliant they eventually diagonised me in Feb last year with fnd , nead and it is all down to trauma in my life always here to chat

beesjourney profile image
beesjourney

Hi Kylie. I suffer very similar symptoms, and i too am young (18) and was terrfied of an MS diagnosis which is what the Drs originally thought. it sounds like it oculd be FND from my personal experience (my MRI was clean too!). I know its scary but FND can be managed and you can still live a fulfilling life. i know it's scary hut try not to worry. explain to the neuro how scared you are and hopefully he will be able to reassure you and offer you some help and support. best of luck,take care, beth xx

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