PLEASE help, I can’t go through all of this again😭

New diagnosis and before diagnosis
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Hey everyone,

I almost feel wrong posting here but I know you guys will know MS more than anybody.

I’m 23 Female and actually posted on here last summer but locked myself out of the account.

Around last May I went through some awful anxiety and started to get tingling/parathesia in my right arm and in the corner of my mouth on same side. I also noticed my hands couldn’t stay completely still and I sometimes felt chest tightness.

I was SUPER lucky to get an MRI done within days via RANA (sent from A&E) and to my thrilled, disbelief I got the results back normal and the doctors sent a letter with the words “No evidence to suggest any demyelination or other signs of MS.” One of the best moments of my whole life.

As MS was(and still is!!) my biggest fear, soon as I stopped worrying bout it being MS all the symptoms just disappeared.

It was a lovely few weeks of calm before little doubts crept in. “What if I have the spinal version that wouldn’t show on a brain MRI?” Or “What if when I was scanned the lesions were too small to me seen?”

I told myself that I couldn’t live in that fear and that a neurologist and scan had declared me no MS so carried on.

Fast forward to the start of this year my life’s been empty and awful again which has meant a lot of time with my own thoughts, this means the MS fear has crept back in.

I’m gonna list the “symptoms” I’ve been having:

  1. Same tingling and numbness as before (this one doesn’t worry me much as I had it last time and it wasn’t MS that time so makes me think it may not be this time).
  2. Headaches at front of head but think may be dehydration
  3. I’ve noticed my feet constantly tingle
  4. I had a tight stomach yesterday and thought it was MS hug until I remembered the night before I’d ate a lot of spicy food
  5. Stood in a shop earlier and realised I can’t stand perfectly still and sway ever so slightly back and forth
  6. After I use a hairdryer my fingers vibrate after

Every day I have what I think it’s a new MS symptom. I know it’s so awful for me to say this in a group where people have this confirmed but waiting for the MRI results last time was the worst time of my whole life. I’m scared I won’t get another all clear.

I do just want to add some things about my medical history: I have type 3 Ehlers Danlos, I have really bad neck posture and trapped nerves, im heavily medicated on both Mirtazapine and Amitriptyline which I know can cause these symptoms. Neurologist last time said he thinks it’s FND.

I want to put this out my head and get on with my life but this is killing me. MS is my biggest fear in the whole world.

Please can anyone offer any advice or their opinion on what they think this is.

Thanks so much😭

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It’s easy to get trapped in your own head with this stuff. And when that head is full of roiling anxiety with no path to resolution, that’s not a nice place to be. They say you can’t prove a negative, and that is true, but you certainly can waste half your life trying and make yourself very miserable in the process, and that’s an easy trap to fall into.

You’re giving yourself some very good advice in your post. You’re asking yourself the right questions, but it seems that you’re not listening to yourself when the answers are reassuring.

Nobody wants to be taken by surprise by a life changing diagnosis.
I think there is a risk that we say to ourselves, ‘Well at least it isn’t going to take me by surprise dammit!’ and then proceed to waste sweet life worrying about the gruesome things that might be the matter.

Try not to be that person. Life is sweet, but it’s quite short and as the poet said, whether or not we use it, it goes.

I think that anxiety and its management is your priority here. It sounds like it’s making your life a misery and that’s a real shame. Your fears are very human and are very understandable but it doesn’t sound like they’re helping you right now. I hope that you can soon find a path to feeling more at ease and enjoying life more.

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Time … you can never get it back .
Life is to short enjoy every minute of it .rich or poor sickness or health… try not to worry . About the maybe z …clear your head and focus on the positives…

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Hello, as it happens one of my stepdaughters has Ehlers Danlos. I know from her experiences that it’s a difficult condition to live with and causes many and all sorts of unknowns, anxieties and uncertainties about life day to day and in the future ( and this is on top of dealing with fatigue and pain).

I am thinking along the same lines of Alison 100 about depression and anxiety. I know that quite understandably many people with ED suffer from both.

Can I ask if, on top of Mirtazapine and Amitryptaline, are you getting any e.g counselling type support to help deal with having ED ( my stepdaughter went through quite a long period of needing such support) and have you been in touch with any local ED groups ( if there are any near you)?

I’m by no means an expert but I tend to think that as both ED and MS are relatively rare conditions the chances of you having both must be very, very small. So, easier said than done but try to put MS to the back of your mind and get whatever support you can in dealing with the uncertainty and anxieties of Ehlers Danloss. Does that make sense?

(P.S. for what it’s worth I don’t think the symptoms you list are typical of MS - I think everyone sways a little or feels they are swaying when standing and , if they stopped to concentrate on it, most if not all people experience a bit of buzzing after using hairdryers, hand food mixers, electric drills etc ).

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Thank you guys, you’re all awesome here. I have had counselling in the past, I am very lucky with my EDS and have quite mild symptoms. I have accepted it years back, I guess MS is just something I fear so much that every time I feel anxious the fear of it returns. Until I felt the tingling again I was going well. I know I must sound like an absolute idiot to you thatve all diagnosed.

Can I ask , what’re the chances that the MRI missed something? Also what’re the chances I’m one of the ones that just has it in the spine? Would that show on brain MRI? X

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I can’t answer your two question other than to say I suppose it’s possible but………… the chances of you having EDS, and MS and lesions not being picked up in a MRI must be very, very,very small!

I am left wondering if the possibility of you having MS has become a focus for anxiety that has developed from some other issues and fears?

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If we were to tell you ‘minimal’ was the answer to your questions, that wouldn’t help, would it? Not least, because we have no basis on which to answer you at all. The question is, if your expert medical advisors gave you that answer, would THAT help? And, if not, what WOULD help? I think that’s the question you need to ask yourself. What would it take for you to feel reassured?

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It does help a bit, I think a spine and another brain MRI would help but I know that’s a very difficult and long road to go down. I know I need to put this out my head and stop worrying because it does no good. Thanks for all responses x

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Hi there,

I just wanted to comment as a 21 year old who was diagnosed at 15 as I noticed your age-

Experiencing MS (particularly young) is sh*t, and I personally refuse to speak about it any other way. I completely understand why you’re so scared about the possibility, but please be reassured slightly that although it would change your life, it wouldn’t end it.

I have bad days, that’s for sure, but there is still happiness there! I am slowly working through the idea in therapy that I am not MS, I just live with MS. It’s in my life, but IT ISN’T MY LIFE!

Getting listened to can be a pain, but I send you love and prayers- if this is the outcome and there is anything you would like to chat about, please let me know xxx

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