Anxiety before diagnosis

New diagnosis and before diagnosis
1

Hi, I have seen a Neuro Surgeon who did balance and reflex tests and said I was fine and am currently waiting for my appointment to come through to see the Neurologist and just wondered if you would share your experiences with me please and hopefully put my mind at rest.

Obviously Im anxious at the moment, the fear of the unknown is scary but these symptoms are making me worse as I dont know if it really is anxiety or MS. Ive had anxiety on and off for years, Im not medicated for it, probably more fool me, but as I know what Anxiety can do to you, Ive been able to deal with it. I hardly ever go to the Doctors, but went with a funny type of numbness down my right arm which I thought was down to an accident Id had, she suspected a trapped nerve and sent me for an MRI. The results shown an area of Demyleination on my cervical spine and since MS has been mentioned Ive been struggling, and although Im trying to convince myself its just my anxiety taking over, Im not winning this time.

Ive had pretty much constant tingling in my legs, more below the knee, could be one, could be both, has gone as far as my pelvis, then could be just my foot or my calf etc, its so random. Im lightheaded but then I can be totally fine, my eyes feel strained but then are ok. Ive had my eyes tested recently, prior to all this and Im told they are healthy. I have finally been taken seriously about my clicking stretchy joints, and have Hypermobility or ligament laxity as the consultant said. This has got worse these last few months. I have had week knees for years, again on and off, its a funny feeling, my joints arent sore, its like my knees are weak and tired, I realise this could be something to do with the hypermobility. Ive had various symptoms over the years, all have been put down to anxiety, I feel Im labelled with it but they are definately worse since my MRI results, hence is this all in my head?

I know I cant change the outcome but I dont want to go to the Neurologist and be labelled with Anxiety and waste this valuable appointment when it could be MS. Will he be able to tell the difference? Obviously Id rather it was anxiety of course.

Sorry for the long waffle but what Im asking is do symptoms come and go in the same day, hour? Are they as random as what Ive been experiencing? Are they there for weeks? Could this be my anxiety taking over? Im just finding it all really difficult at the moment.

Thank you for taking the time to read.

2

Hello

Well, your symptoms may be caused by MS and maybe not. By all means, you could take a straw poll of what symptoms people have and how long they last, but I don’t think that will give you any more knowledge than you already have.

We are all different and while some of us share symptoms, it’s unlikely that you’d find a single person who has exactly the same symptoms, lasting the same length of time as another.

When you’ve been anxious for a long time and you know you are prone to anxiety, it’s not surprising that you’d want to know how others experience MS.

What I suggest is that you start a diary or timeline. Think back as far as you can and write down all the symptoms you’ve had, when they started, how long they lasted and whether everything has completely resolved. As you go on from this point,you could start keeping a proper diary of your health and symptoms. I’ve been keeping a diary on an app for my phone and iPad for the last 7 years. It’s invaluable when I want to know what has happened and when.

When you do eventually see the neurologist, s/he will want to know what has brought you to this point. So your history will all be important.

In addition to asking about your history and your symptoms, the neurologist will/should do a physical examination. There are some reflex tests that indicate MS, some ways that a person with MS will react that differ from the reflexes of someone without MS. So I doubt that the neurologist will decide it’s anxiety alone that has caused these symptoms. In particular since you’ve had an MRI showing some demyelination.

It’s unlikely that the neurologist would make a decision there and then about whether it is or isn’t MS, or indeed any other diagnosis. It’s more likely that s/he will see whether they think it ‘might’ be MS or something else and refer you for more tests.

Try not to worry too much. You could phone your hospitals appointments team and check that your appointment is on the way.

Best of luck.

Sue

3

Thank you so much for taking the time to reply. Its spooky as I got a call from the hospital this afternoon and my appointment is next Saturday morning. I think the not knowing is probably worse than the waiting.

I had read on here about making a diary so I started last week but I will think back to things that have happened over the year too. This all started in my 30’s, I got a new job in a college, caught a virus that lasted about 6 weeks, couldnt tolerate the sun, got a funny rash on my face and chest that is still faintly there but had inconclusive tests at the time. I remember my knees feeling so weak trying to climb the 3 flights of stairs to the office I worked in, yet I wasnt out of puff. Could all be a coincidence I know. I am an over thinker but its wierd as I actually feel very calm, maybe because I actually have something legit to worry about this time

Thanks for listening, Im trying not to burden my husband with the way Im feeling as I know hes already worried and Im trying to stay away from Dr Google

Louise

4

Hello again

It’s good news that you have an appointment, and very soon, so not too long to worry.

And I understand not wanting to worry your husband. But, do try to take someone with you to the appointment with the neurologist. It’s very easy to sit there in front of the doctor, following everything s/he says, then leave the room and ask ‘what did she say?’, or ‘what was supposed to happen next?’ I call it neurologistitis. It happens to us all. Our brains sometimes fly out the window when at an appointment!

Sue

5

Thanks again Sue,

My husband will be coming with me, hes very supportive and it feels he is constantly asking how I feel, so I keep saying ‘Im ok’ as I dont want to drive him as insane as I feel at the moment.

I feel very very lucky to get my appointments so quickly, I seen the Doc mid December and have had an MRI and first hospital appointment 4 weeks ago, so very quick. My next appointment is 9.30am next Saturday so I am very grateful. I feel so much for those who have had to wait months, the worrying isnt nice.

Thanks for your support

Louise

6

Hi Louise

Come back and tell us what happens at your appointment.

Good luck.

Sue

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