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245 Views 4 Replies 4 Participants Last post by  purplesnowflake
Hi. I 'm having a MRI and Cat scan soon to check for vasculitis and I'm worried. I do nt know why as I've had both before but after reading up on vasculitis it's scared me. Is it as bad as I've read online? I've had neuro symptoms for years and thought I'd got my head around things but I've got myself in a flap about it now and can't get out of it. The unknown is scaring me where as it never used too.
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Hello :)

I'd say that vasculitis is like any other symptom, and it ranges from the mild to the more serious. Of course online articles focus on the more serious aspects of it.
I expect it is like many other symptoms too, in that most of us suffer from it to some extent, the question is whether it is significant enough to need any treatment. For example it seems that most of us have some protein loss at some stage and some lung damage so slight that we are never aware of.
Very often the disease modifying treatment will help with all symptoms

Perhaps after that good appointment, now that you feel closer to diagnosis, you are permitting yourself to think in real terms what it might mean to you, whereas up until now you have had to take it easy, so to speak.

Try to focus on the positive: this is an important step towards diagnosis and treatment and hopefully towards feeling better before too long.

I am sure that others with vasculitis will be along to share their experiences.

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Sorry to hear that you aren't having a great time at the moment. Fear of the unknown is scary.

Clares advice was great as usual!!!

I have had vasculitis twice, in different areas. I still dont understand how it works as when I have read symptoms they are really scary, yet they arent exactly what I have suffered from ( some are but much milder).

The only thing I can say is that you already know what symptoms you have and they are treating seriously and the meds for it are extremely effective, as with all other things everyones experiences are different, so don't worry too much about what you read.

Hope that makes sense and isn't too jumbled.

Sending you good wishes.

Take care

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I too am sorry you have been so unwell and are now in the process of awaiting tests to try and rule out or in the possible cause. Waiting and wondering is such a painful and worrying time emotionally.

I think the previous advice and thoughts are very sound. Everyone's experience is different and will vary in severity and progression or in some cases remission. So it's impossible to look at symptoms of a particular aspect of a disease and match it with our own. Likewise treatment also.

When trying to diagnose things docs will have to go through a logical set of tests to try and determine the likely possibility of something given your symptoms. If it's negative then as frustrating (and many times reassuring! )that is at least that aspect is ruled out and they can move onto the next possible scenario. If it is proven then you have a clear cut course depending on the severity of it and treatment and ultimately improvement can start.

It's best to try and take one day at a time, something which is very hard to do in this situation but also keep an open mind. They may look in one area and come to a dead end and the rounds of testing and monitoring start again :sad: The main thing is the testing and monitoring though, without that then it is a far worse situation and the potential for things to go wrong is real.

I was very unwell and there's no way I could have worked, it would have been physically and mentally impossible. I was unable to remain upright at it's peak. However I did not have it as bad as some I am told so for that I was grateful. We all differ.

It's possible too that some of your symptoms could be from something like Antiphospholipid Syndrome. Have you been tested for that?

Good luck with your testing and if you need any help with trying to understand things then don't hesitate to ask. We will try our best.

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Hi Thank you for your replies. I'm having a better day today and not feeling so blue. I had a hug of hubbie and cuddled my dog and destressed.I just need to think positive and concentrate on the now and Christmas rather than what could be etc. At least I'm being taken seriously and things may get sorted and will feel better soon and have my life back even if it's different.
Thank you very much for being there. It helps to have someone to moan to. This site and everyone are great.
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