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Katie

Neuro suspects ME and Fibromyalgia

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Katie

I saw the neuro today and he did some tests while I was there and has pretty much ruled out MS.

 

I have to go for brain MRI to be sure but then a rheumatologist and a psycologist.

 

Feel a bit numb, stunned and confused, don't know much about these and what happens next.

 

 

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Hezza

:hugs2: Katie,

I'm sorry you didn't get firm answers yesterday. I'm sure many on the forum will be able to empathise with that. While it may not feel like it, the good thing is that there is some sort of plan for further investigations and follow-up.

 

Your Neuro should write to your GP confirming what happened at the appointment and his recommendations. It may help to make an appointment with your GP to discuss how it went and make sure that the necessary referrals are booked in.

 

Please continue to hang around with us here for support and look after yourself.

 

:hearts:

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Life is short. Eat dessert first. Jacques Torres

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rosie-b

Hezza has explained this so well. A plan is always a good idea. And it is a good idea to hang around with us for support and be sure to look after yourself.I will be off now!! :witch:.


Rosie B

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Nick

Good news that they are ruling out MS! As Rosie-b says it would be fine if you want more support here. Don't worry about MRI scans .........they can be a little daunting if you have never experienced one but there is nothing whatever to be concerned about.

 

Nick


Just another Warrior...........

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Sleepy
Scully

Hello Katie,

 

It's good news they are ruling out MS. Nobody wants that!

 

On a positive note. If they are saying fibromyalgia and/or ME/ CFS. And referring you on to a Rhumatologist and Psychologist they we at least doing something positive and guiding you down the correct route, so you can obtain the correct care and treatment. Rheumatology look after fibromyalgia and ME.

 

If you look at all neurological conditions as being under one big umbrella. And under that umbrella includes everything from serious and life threatening conditions, through MS, FM, CFS and ME etc. At least with a diagnosis they know which Department should be looking after you and you can move forwards.

 

Never underestimate ME or Fibromyalgia. Information here http://www.fmauk.org

 

They are very real conditions that thousands of people suffer with everyday. And, perhaps be very pleased that MS is out of the picture.

 

In the meantime, do hang around here and, as ever, we shall do our best to help out where we can

 

Scully

x


Edited by Scully
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They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Katie

Hi Everyone,

 

Thank you for your replies.

Please don't misunderstand, I am very glad I do not have MS. I think I am just a bit taken aback as I hadn't thought of ME and I don't really understand what's happening now with seeing the rheumatologist etc but thank you Scully, that helps.

 

You know what it's like, you doubt a diagnosis as it doesn't seem to quite fit but I think if I have the MRI and see the Rheumo then I have had all areas covered and I will feel more comfortable about diagnosis.

I suppose a small part of me would have liked a spine MRI too - just to rule everything out, especially as a lot of my problems of late are in my legs.

 

I was very lucky to have a good neuro who has taken these steps to diagnosis for me.

 

Thank you all for encouraging me to stay on here, I would like that. I have looked at many forums but you all here seem very level headed and honest whilst sympathetic.

 

Katie

x

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Nick

Hi Katie,

 

A few years ago my sister went through a long period of severe problems which were eventually diagnosed as ME. A bit like MS this is a very difficult thing to get your head around and for other people to even begin to understand. Again, I am no expert but just the process of diagnosis and your own understanding of how to 'look after' your self can be extremely helpful. If it does prove to be ME the outlook should be very good BUT it will take a lot of working at by you. This again has similar connotations to aspects of MS which is why I am sure we will all be delighted if you hang around with this bunch of rebels!!

 

Nick

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Just another Warrior...........

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Sluggish
Marina

Katie, you've been through Limboland for so long now! With your visit yesterday and the forthcoming MRI, hopefully you'll soon get some definitive answers :hearts:

 

The problem with ME and Fibro is that there are no tests that can definitely say one has either of them. The only way is to rule out all other possible conditions.

 

Re Fibro, the rheumatologist may go through some of the diagnostic criteria with you:

- Tender Points and Trigger Points http://www.fmnetnews.com/fibro-basics/diagnosis

- Fibromyalgia Diagnostic Criteria and Tests http://chronicfatigue.about.com/od/diagnosingfmscfs/a/diagnosingfibro.htm

- 2010 Fibromyalgia Diagnostic Criteria https://www.rheumatology.org/practice/clinical/classification/fibromyalgia/fibro_2010.asp

 

Re ME:

- Symptoms and diagnosis of ME/ CFS http://www.meassociation.org.uk/about/the-symptoms-and-diagnosis-of-mecfs/

- The Chronic Fatigue Syndrome Diagnosis http://chronicfatigue.about.com/od/diagnosingfmscfs/a/diagnosingcfs.htm

 

It's good the neuro is asking for an MRI as I don't see how he could otherwise say it's not MS. Do you by any chance have (a copy of) the MRI you had done a few years ago? It could be useful for comparing with the MRI you'll be having.

 

Our Resources section has a few links to sites about ME and Fibro: http://ms-people.com/forum/links/category/15-conditions-that-are-similar-to-linked-to-or-mimic-ms/

 

Good luck with your future appointments, and please stick with us - a few of us have been down the ME or Fibro route, and some of us even have MS and ME or Fibro.

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Marina

(belated DX in June '05, SPMS)

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