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Suzanne016

I've finally got a diagnoses

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Suzanne016

Hi everyone,

 

I just thought I would share my news I went to see my neuro on Friday and he has told me I have not got MS but I have got severe nerve damage where with MS the myelin is damaged mine is the nerves itself. He told me I will never walk again (which I knew deep down) and my bladder will never work again. I will have times when I am stable and do not deteriorate and times when I am bad. The times when I'm bad whatever damage done will remain but I will then steady out again.

 

I know its not brilliant news but at least I now know its not in my head and not a functional disorder.

 

He did tell me to rest and avoid stressful situations which is easier said than done with two young daughters who fight and bicker all the time. :flowerface:

 

Thank you for listening especially considering I shouldn't be using this site but everyone is so friendly and supportive.

 

:cowboy: Suzanne x x

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Sleepy
Scully

Hi Suzanne,

 

I'm pleased to hear you have a diagnosis, but sorry to hear that the alternative to MS doesn't sound too great either. It must be really difficult for you to come to terms with it all the same.

 

Did your Neuro offer you any explanation as to why the nerves have been damaged at all? Is there no underlying reason that can be treated? But I'm sure you asked him all that.

 

I don't think you should vanish from this site, there are a couple of people that have an alternative diagnosis, but, as the symptoms are the same, they have stayed put. I'm sure, as others will say, that we all are more that happy for you to stay, for the support and encouragement that this site offers.

 

Thinking of you

 

Scully

x


They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Heffi

Hi Suzanne,

Likewise pleased you have a diagnosis and know what you are dealing with. Does it have a name?

I hope you decide to stay with the site, especially as the outcome and symptoms are so similar to MS anyway. I know others have who either remain stuck in limbo-land or have an alternative diagnosis.

Here's to prolonged periods of stability!!!

:flowerface:

 

Heffi

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Gemma81

Pleased to hear you have a diagnosis, like you say atleast it helps you make plans and come to term with things. I do think though that no matter how much you are expecting the bad news its still not easy to hear :flowerface:

 

rest and avoiding stressfull situations isn't really compatable with 2 kids is it :cowboy: plus i imagine the added pressure of knowing you shouldn't be getting stressed in the first place won't help.

 

And like others have said your more than welcome on here, there's many of us without an MS diagnosis (myself included) either way its a great place for advice and support from people with similar problems.

 

Take Care

Gemma

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Dianni

Hi Suzanne

 

I'm pleased for you that you finally have some answers. A dx is a relief. I think there are many of us who worry that our symptoms are 'in our head', especially before we get a dx.

 

As long as you feel happy here, please stay. As the others have said, your symptoms are similar and you haven't changed because you have a dx different to MS. There are a number of people who have joined during the investigation process and have an alternative dx to MS but have still stayed with us so please feel free to remain 'one of the gang'.

 

Hugs

Di

xxx

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lisalisa

Hi Suzanne

 

Sorry to hear that news, but pleased that you know whats wrong at last.

 

You are one strong lady Suzanne, coping with this and bringing 2 kids up... I take my hat off to you.

 

Wishing you all the best

 

Lisa xx

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