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Newly diagnosed but still have to have a day of tests

Hi folks

I was diagnosed on Wednesday but I still have to go back for a day of tests including a lumbar puncture, MRIs and evoke potentials tests. I’m really confused as to why it’s all necessary, particularly the lumbar puncture if the neurologist has already diagnosed me.

I’m also really struggling with anxiety. I have mental health problems already, including OCD, and the uncertainty of all this is making it very hard to control my anxiety. The neurologist wants to speak to my psychiatrist before we make a decision about which DMD to go on as he doesn’t want it to mess up my mental health. I’m not very good with uncertainty as it makes my rituals a lot worse but that’s basically what I’m going to have to deal with for the rest of my life now.

I took the news at the Neuro appointment well at the time as I was expecting it but as time goes on I’m getting more upset about it. Feeling a bit sorry for myself tonight I’m afraid.

Jude

hi jude

these extra tests will be necessary or you wouldn’t be offered them.

probably the offering of a DMD and especially which DMD will depend on them.

it is very encouraging that your neuro team want to liaise with your mental health team.

it sound to me that you are being very well cared for.

try to let go of your anxiety.

tell yourself that you have not one, but two, teams of highly qualified doctors trying very hard to help you.

it stinks that you have ms now as well as mental health problems.

however the support you are getting should provide a deodorising effect on the stink!

tell yourself that you are lucky!

honestly i totally get the anxiety you feel but imagine how much worse it would feel if you were just left to deal with it all alone.

please keep us updated.

carole x

I completely understand how an unknown diagnosis and uncertainty can increase anxiety problems as I’m currently waiting for my brain MRI results and my anxiety is really bad right now. I also feel my symptoms are worse than it’s ever been and I think it might be the anxiety from waiting for the results that’s making it worse. All I’m doing right now is thinking about it, coming home from work everyday rushing through the door to see if I have a letter. Uncertainty and being in the unknown for me anyway, just spirals my thoughts out of control.

I think it’s brilliant that they are thinking about both your neurological health and mental health, it does seem like you are in good hands. Perhaps they now just want to know the severity of your MS? I’m not sure how it works to be honest.

I hope the anxiety calms down soon.

Best wishes,

Emily

Thanks Carole

I loved your comment about deodorising the stink. Really made me chuckle. As you say I have two teams looking after me now who both seem excellent. I’ve always been so lucky with my care coordinator from my mental health team. I’ve had a few due to department changes and maternity leave and I get on well with my psychiatrist. I also really rated Dr Bozzali who was the neurologist that I saw. I’m now being referred to a psychologist to help with my OCD so hopefully that will bring my anxiety down a notch.

So yes, although this sucks, I am actually very lucky to be taken care of as I am.

Thanks for your reply Carole and I’ll let you know how I get on with the tests.

Jude

Hi Emily

I can really relate to rushing to see the post to see if my appointment has come through yet. Fingers crossed we both hear soon. Sorry to hear your symptoms are so bad right now. I hope that and the anxiety gets better for you.

Thanks for your reply

Jude