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Partner newly diagnosed and left in the dark

Hi all, I’m just looking for abit of advice, support and guidance. My partner was admitted to hospital last Sunday after having lost his vision. After having a ct scan, MRI and lumber puncture he was diagnosed with MS two days later. Not at all what we was expecting! He was treated in hospital for 6 days he had 3 courses of the steroid IV treatment and sent home with vitamins :-/ and told he would receive a appointment for neuro in post. That in a nut shell is exactly how things happened. The neurologist at the hospital was on leave so they was liasing with a neuro from another hospital for his diagnosis. We do not know what will happen next. He has been given a 6week sick note and told to go to his gp for a calcium check! How long will it take for neuro appointment? What will happen at the appointment, what support it there for him? Since he came home his symptoms have got Worse, his sight is a little better, but he is complaining of numbness down his left side arm/leg his left side of his face also has episodes of dropping. We mentioned all this before leaving the hospital but was assured it the steroids causing it after 4days it has not subsided n is getting worse he is also complaining of a constant headache and a ‘drunk’ feeling. I don’t know how to comfort him, I do know how to help him the hospital literally discharged him saying there’s nothing we can do for u here now that you can’t do at home? We are so in the dark. His gp has openly said he has never had a patient with MS before and doesn’t have much advice to offer apart from wait for your neuro appointment. Any advice and guidance would be greatly appreciated? What to expect? The good the bad and the ugly? Any light at the end of the tunnel? Hayley x

I don’t have much advice I am afraid but wanted to send a hug and some moral support, with Christmas very close I suspect your neuro appt may get a bit delayed unfortunately it’s a bad time of year to try and get seen :frowning: being supportive and being there for your partner will help, there are lots of resources available from this website so have a read around, maybe start a symptom diary and start making a list of questions for the nuero when you see them.

I was also hospitalised, given a course of steroids which didn’t work and then discharged. I felt abandoned! Basically you have to get the right medication to manage the symptoms if available and then try to get through your first episode if you have relapsing remitting MS. I slept a lot and am on gabapentin for the nerve pain. You could try ringing the ms helpline to get some support and reassurance and as previously said there is loads of information on this website. This forum kept me sane as I didn’t feel so alone. I wish you both well at this scary time.

Hi, so sorry to hear your fella has got his diagnosis so kind of abruptly! I can imagoine how it has knocked you both for 6!

Getting a diagnosis of something as massive as MS, takes some dealing with. Most people have symptoms for a while and others have them so long, that they already suspect MS.

You need to take time for it to sink in and then start asking questions for an MS nurse and neuro. The waiting time for the neuro appointment is an unknown, but you could try ringing his secretary and ask…that sometimes works.

Depending on which type of MS, your chap has, could determine which meds he will be put on.

Try not to despair completely, as there are many folk living a long, good and happy life, with MS. Although it isnt curable, it can be managed with the right support and help.

This forum will do it`s best to advise and befirned you and your man.

luv Pollx

Hi Hayley, It’s a shame that you have both been left with this in this way. I was only diagnosed two weeks ago and have felt similar. I was just given some leaflets and told to read about it and wait for my appt. Luckily for me, I’m being seen soon (06/01) by the neurologist to discuss treatment etc. I’m also seeing the MS nurse at the end of Jan. It would be worth finding out if your trust has a dedicated MS Nurse? For me, it’s just slowly sinking in. People don’t know what to say and I’ve had lots of comments such as “you can get funky walking sticks now”. Not really helpful. Just be an ear to him and try not to read too much too soon. All the best Lorna x

Hello Haley. Ideally what should have happened, is your partner should have been seen by the ms nurse while he was in hospital…whats happening on these wards?? You can telephone the neurology department and request a phone call from the ms nurse. I’ve only just recently been diagnosed…you and your partner will find plenty of support and information on this forum. Take care xxx

Thankyou for the feedback guys… Iv found lots of guidance on here already which has really helped. Unfortunately my partner is really struggling getting his head round things but today says he feels 10x better so fingers crossed things are looking up. We will look into finding a MS Nurse. Thanks again guys xx