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new diagnosis - what happens next?

Hi everyone.

Well, it’s been just over a month now since my diagnosis and its gradually beginging to sink in more and im beginging to find that bit of acceptance now and then.

I was just wondering what happens next? I know I was in a bit of a daze when the neuro was talking to me.

He said something about a MS nurse. How long does that take? I havent heard anything or even know a name.

I also think at the moment I am suffering a relapse. New symptoms and am feeling terrible.

What do we do when this happens? I dont have any contact numbers for anyone.

So, I have made an appointment with my doc. Will he be able to help more with meds ect, now I have a diagnosis?

Part of me is so glad to be out of limboland, but where do we go next?

I would have thought that after a diagnosis they would give you like a care sheet with names and numbers of people to contact.

Teri x

I know the feeling, this is exactly what’s been going on with me. The neurologist tells you but then nothing happens!! I’ve also made a GP appt but couldn’t get one until 31 August!!! I agree they should give you something when you leave, keep us updated and let us know how you get on. Sarah xx

Hello Teri,

When I got my dx but was told I would have a ms nurse. Who didn’t ring to make an appt’ to see me for about 4 weeks, then I received a letter from physio saying that they would write and make an appt’ in about 12 weeks time. It is a waiting game I’m afraid.

I was on one drug which didn’t agree with me so I phoned my ms nurse who contacted my neuro who prescribed another drug, this took about 3 weeks. It’s always a waiting game, I’m sorry to say. I also believe it depends on which part of the country you live.

I hope you have luck with your gp and you hear from your ms nurse very soon.

Janet

x

Hi Teri

I was diagnosed at the begining of July and was told the ms nurse would contact me in 3/4 weeks. I received a phone call from her in the 5th week and she visited me at home on Tuesday.

If you google ms services in Plymouth it says you have 2 nurses that cover your area, gives their names and a contact number so if you are feeling like you are relapsing or just generally struggling then maybe you should give the number a call rather than sit it out.

I was feeling alittle abandoned too but now I have contact at last everything seems to be falling into place.

Good luck

Ness x

Hello and thankyou for the replies.

I didnt think to google ms services doh! I know we have nurses and I think the neuro told me about an open clinic they run too, but am not too sure.

I will give them a call and see what happens.

Teri x

Hi Teri How are you feeling today? Are you feeling any better? Stardust x

Hiya,

sorry about your dx but at least it does open doorways to services. That does entail the start of another kind of limbo I’m afraid.

The waiting for the postman or the phone to ring will take over now.

Every region is the same but all of them mean waiting for appts,and nothing seems to be quick.

I was told in Feb I qualified for dmds but didnt start them til the end of May,with lengthy gaps between neuro appt and contact with the ms nurse.

If you go to your gp while you are waiting at least if it is a relapse it will be recorded,and now you have a dx he may be more willing to give you meds for it.

I would also try to contact your neuro secretary.If you call the main hosp and give the consultants name they can put you through,if dmds havent been suggested if it is another relapse it may mean you are now eligible.

On the practical side dont forget to inform dvla,insurance and check if you have critical illness cover as ms is covered.

Take care

Pip

Hi Again.

I phoned the number for ms nurse, only to get any answering machine asking for a malbox number, to which I dont know, so hung up.

Just wish monday would hurry up so I could get to the docs. I feel awfull.

Ive been suffering from vertigo recently, which I never had before.

Also my arms have the most sickening elec shock like feeling when I move my head. Usually get tingles down my back and in legs and feet, but never in my arms like I have.

The worst pain is the bolts of pain that shoot through my mouth. Top and bottom. Yet none of my teeth hurt and I couldnt say where pain was from.

I had something like this (but not as bad) a while back, but the dentist could see nothing wrong with my teeth. I was due to go back the other day, but I felt so bad, I couldnt make the appointment. Now have to wait over a month til I can been seen again.

Im taking Tramadol, but its not doing much for the pain.

I just seem to be spending my time lying down and sleeping, as I dont feel quite as bad then.

Although last night, my mouth, lips ect, went numb and it felt like my lips had swollen really big and was making funny faces. Although they hadnt and I wasnt!

Please let me wake up tomorrow and it all be gone away. Dont like this one bit!

Teri x