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Finally have diagnosis.....Rather Emotional

Well after the long wait, I got the DX from the neurologist. The tests confirmed its not Devics Disease but is Progressive MS. It was one thing thinking it was progressive but totally a different matter being told that it was. He has done a referral for MS Nurses and I have a bladder scan next Friday and then see Incontenance Nurse. I can’t believe how fast things are now moving!!! All very scary and my emotions are all over the place!! I keep shouting at the boys, then feel really guilty but the slightest thing sets me off. I know things will improve but just need to get my head around everything!!! Hope everyone else is OK and have a good weekend Sarah xx

Sarah I’m so sorry you’ve been diagnosed with PPMS but I am glad it’s not Devic’s. It’s a much worse thing to have (I know I had to be tested for it too). Your emotions are proabably all over the place at the moment. You’ve been told some life changing news - even though you may have had suspicians to hear it actually makes it concrete where as before there was always that happen that one morning it would all be better.

Give yourself time for it to sink in and take it easy. People describe getting a diagnosis as grieving and it is. So let yourself grieve and don’t feel as if you have to hold it together.

I’m sure you’re going to have lots of questions and feel over the place the next few weeks. Just know we’re all here for support.

Once again so sorry for your PPMS diagnosis but I am glad it’s not Devic’s. Hoepfully you can start getting some help and support with the news of your diagnosis.

Reemz

X

Hi Sarah I too have PPMS and was dx last Dec. I know how you feel - it’s a huge thing to take on board. I find myself very short and snappy with my boys too and then feel really guilty. Give yourself time to get used to the idea, it’s not easy. Take things day-by-day and give yourself plenty of rest. It is good that the neuro is getting some help for you. Mine just said ‘there’s nothing I can do for you’ and then signed me off. My bladder problems have recently got much worse and I now need more help and am seeing my GP asap. It is scary but human beings are wonderful - we adapt and adjust and you will but it will take time. You have loads of wonderful times ahead of you with your family. Your life will change but everything will not be bad - lots of things will be fab. Thinking of you, look after yourself, Teresa xx

Hello Sarah,

Sorry to hear of your dx but at least you now know what you are dealing with. It is hard to come to terms with it and I’m sure in time you will. In the mean time take each day as it comes and make sure you rest when your body tells you to. We are all here to listen and help if we can.

Janet

x

Thank you everyone. My neuro is very good and very thorough. I don’t know how long everything takes but am trying to take each day as it comes. The boys are being very good and putting up with me. I do need to listen to my body more and take help when it is offered to me. It’s a relieve to know and I’m sure over time it will sink in!!! Have a good weekend everyone and once again thank you Sarah xx

Everybody has said all i would… Thinking of you. Sending some cyber hugs and best wishes. Give yourself a chance to digest the news and keep in touch. Everybody is here for you- feel free to post anything you feel on here… This forum is a fantastic support xx

Hello Sarah,

Sorry to hear about your diagnosis but so glad its not Devics.

It was suspected I had Devics for a while, so was actually pleased to be diagnosed with MS, the alternative is worse.

I am not trying to belittle MS; its tough to come to terms with but I try and focus on the ‘things could be worse’.

The symptoms you read about, may not happen to you. The condition varys so much from person to person.

glad you got a good Neuro and lovely boys.

Rest when you can.

The forum is invaluable.

Take care x

Hi Sarah My neuro told me yesterday he thinks I have ms so I can relate exactly to how you feel. It’s an emotional roller coaster as we try to come to terms with it. I agree with Claire - things could be worse. try and focus on the positive - it can be managed, accept any help offered, talk to friends and family (and us) and don’t be afraid of telling them how you feel. And stock up on tissues - I’m keeping Kleenex in business at the moment! x

Hi Sarah, as you say, it is one thing thinking etc. You do need time to get your head round it.

Some folk will think this strange, when someone says they actually prefer one desease to another. Is that how you feel about MS/Devics?

In my own case, i would rather be told I have PPMS than HSP…due to the 50% chance of me passing down the HSP to my children/grandchildren. Have you tried to explain to your boys, as to what`s going on? Or are they too young to understand? I believe the MSS do a leaflet on how to tell young children that you have MS.

Never beat yourself up for being bad trempered, edgy or just too damned tired to do things. Accept any help that is offered and try to find some me time amongst it all, eh?

much love, Polly xx

Everyone has said everything,but add me to the list of people who are thinking of you.

Dont forget when you need a real rant,or an opportunity to mull over what you are thinking and feeling,if you do it on here it can be cathartic and no one that is your nearest and dearest gets hurt by hearing your darkest thoughts.

Take care and be kind to yourself.

Pip

Hi all, thank you all so much for your kind words. I too am keeping Kleenex in business, silly little things set me off! Went to the gym with Nig and boys today, was only going to swim but was told before they would let me I need to get a letter from docs/physio to say I could. I know it’s to cover them etc etc but they’ve not asked before, so that set me off. I’ll have to ask physio on Thursday. So I sat and read instead. I had already thought I would ask him what I could and couldn’t do in gym anyway. I’ve printed of the MSS children information sheet for the boys to read. Head is reeling at the moment! When I spoke to GP yesterday he said yes everything wasp pointing that way. Also need to think what going to do about work as I’m signed off indefinately at the moment!! Too many decisions brain can’t take it all at moment!!! Sarah xxx

Plenty of time to get your head round the dx is needed before you start on decision making. If you are signed off just leave it at that for now and give your head a break.

Time to relax with the family and take stock that you are still the same person as last week but just with a different label.

Take care

Pip