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worried and scared

Hi everyone I have been having symptoms on and off for years now. I finally got the courage to speak up after being ignored ten years ago and left to deal with it but I have just had a relapse which has cleared but has left me with subtle difficulties. I’m so worried. I have a neurologist appointment coming up soon but having been quietly reading the threads I’m wondering if there is any point as I’m afraid I won’t be listened to as by anyone’s standards ‘I’m OK’ now.

Hi Wendy,

Never judge yourself by other people’s standards. Only you know what you feel, so keep that appointment because putting it off will not give anyone a chance to nip potential problems in the bud.

And this time next year you will still be worried.

Regards,

Anthony

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Hi, you might find there is some drug or therapy that could help.

So yeh, go along to that appointment with a fresh hope.

pollsx

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Thanks for the replies. I’m just nervous I will get a dismissive neurologist as so many people seem to get. I have never seen one before so I’m just imagingoing all sorts. I just hope I get given the time and effort to receive the correct answer to my symptoms whatever it may be. I am thinking with my gut and too many things have been going on for too long for it to be stress/anxiety related but at the same time I am not a doctor just a nervous patient to be.

Wendy,

In my opinion you should go. You will learn something even if it is that the neurologist is not great, but they might be totally brilliant. I would advise that you take a trusted friend with you. (The one who makes a fuss if things are not perfect - most of us have a friend like this, if you discuss it with them first you will have a strong ally with you) Only my opinion but you should make the most of the opportunity to get some help.

I wish you the very best of luck.

Mick

Yes thanks. I’m pretty sure I know what I have. I don’t say that lightly as in I try to make my symptoms fit ms. It’s more ms fits my symptoms more than the other things I have looked into. I don’t have all the symptoms listed on these pages and some peoples personal stories I read are pretty shocking and I find people are so brave to what they have to deal with on a day to day basis. But then other peoples personal stories its like i could have written them myself.I guess only the neurologist will be ablessed to tell me for sure and I am only at the start line in terms of investigating. I do have a good support system luckily and my husband keeps me level headed when he sees i am starting to get lost in myself with reading too much. I’m just curious and frustrated with my body. I can accept anything and any diagnosis even if it’s something simple. I just know i will not be able to accept a rude neurologist who dismisses me as ‘it’s all in my head’ because my symptoms happen without warning even when I’m not even stressed or thinking about it. I don’t know. I guess I need to wait and see. Thank you for your supportive replies it really has helped me so much this forum.

Hi Wendy

Reading your post, I’m unclear if you were given an MS diagnosis 10 years ago, but then given no help.

Or were you tested and told it’s not MS, or maybe that it was a clinically isolated event? (I.e. a one off that would gradually improve.)

Regardless of this, you should definitely keep your appointment. In fact most neurologists are great. You may have been unlucky if you saw one who wasn’t. But in the main, over my 20 years of MS, I’ve seen nice neurologists. Some people are unlucky because there are doctors who are dismissive and crap, neurologists included. Hopefully the doctor you see will be more useful.

In preparation for your neurology appointment, it’s a good idea to write down the symptoms you’ve had, rough dates when events happened, how long a symptom lasted, whether they got better over time or have left lasting problems. This will help you to be clear about what has happened to you. And it will also help the neurologist. I’d expect the neuro to ask you the history of what’s happened and when, to do a neurological exam and assuming they feel it’s necessary, tests such as MRI and lumbar puncture. If you had any of these tests before, hopefully it was at the same hospital in order that they can compare the results. Micks advice to take someone with you to the appointment is excellent, partly because often people leave a neurology appointment and can’t remember half of what was said.

So, don’t worry, try not to compare yourself with too many others on here, and good luck.

Sue

Hi ssssue. I have not been diagnosed or investigated. When I tried 10 yr ago I was told it’s normal from my gp so I believed them. They blamed it on depression after my daughter but I was not depressed I was over the moon. Over the years I have had symptoms come and go and at least once a year symptoms become more extreme but I have learnt to bear with it because it eventually calms down.

Hi Wendy

It’s as important not to prejudge your diagnosis as it is to judge all doctors by the useless GP you saw 10 years ago.

But at least you’ve now been referred to a neurologist, the neurological testing can start.

But don’t let yourself be fixed on a diagnosis of MS, there are often other causes for problems which look like MS. You never know, it could be easily resolvable. I know this sounds a bit over optimistic and like I’m belittling your symptoms, I’m really not I just want you to understand that your very real symptoms may have a different cause.

I suspect that many women having just given birth are assumed to have depression rather than having a physical cause to their problems. And your GP was going by the experience s/he had.

So its a good thing that you are now taking it further. It sounds like you’re badly in need of an answer. I truly hope you get one. Sometimes, I know, being told it’s MS can seem like a positive. Just to have your symptoms seriously considered is a big plus.

Sue

Dear Wendys, I was petrified. Symptoms are so wide ranging and scary and there is so little support, however, I saw my neurologist yesterday and he was brilliant. He said that it had helped that I had written symptoms and dates down and had already had an MRI (Dr. arranged this quickly). He diagnosed me and is arranging a course of treatment. I also had written a page of questions and I also took a pen so that I could write down the answers. He gave me his email at the end of the consultation.

I think that it is luck of the draw, but please try not to worry until you need to. At the beginning of the consultation, I told the neurologist that I was petrified because of nhs pressures and of not being taken seriously and he was reassuring on this too.

good luck x

Thank you. I will note down my symptoms although I have not done one before so I will have to generalise the date? Good idea to write questions because I know I will forget under the pressure thank you x

Hi ssssue thank you. I promise I’m trying to not get fixed on a diagnosis. In all honesty i guess i am starting to get fixed on it. But, then I think deeper into it a realise it could be ANYTHING. I just want to know what that ANYTHING is. One thing I am most definitely fixed on is its not all stress/anxiety related. I’m fed up of that one. It makes sense in a way but I don’t live a particularly stressful life. Just normal everyday stresses that everyone faces.