Just diagnosed. What do you wish you knew at this stage?

Cleanthes

Hi all

I was just diagnosed after an MRI scan last week. So far I have very little information - I've just been told 'arthritis', I won't even know what kind till later this week. I wanted to ask for help because I'm in a bit of an unusual situation re. medical treatment.

My dad's work provides him and his family with private medical insurance. I've been so lucky and blessed to be able to be seen and diagnosed relatively quickly. However, once I am old enough I stop being covered, which will happen in January. I'm very happy with my career choice, but it's not necessarily hugely rewarding financially, so I can safely say that I probably won't ever have access to such prompt treatment again. So for the next few months I have quick access to experts (orthopedic surgeon), then it goes away.

With that in mind, I wanted to ask what you wish you had asked/knew at my stage? What should I try to find out about my condition, prognosis, lifestyle changes, diet, anything? Any further scans/treatment I should push for (I'm having physio)? I know I'm really lucky to have this opportunity to get those questions answered, and I don't want to waste it. I'm mid-twenties and have a long life of dealing with this ahead of me - I'd like to be as prepared as possible.

Thank you all in advance for your help

dreamdaisy

Hello, it's nice to meet you and I hope we can help with information and support. From what you have said it sounds to me as though you have been diagnosed with osteo arthritis - if that is the case I wouldn't fret at all about the lack of private medical cover. Those systems are great if you have a one-off epsiode which can be treated by an operation but for an on-going, long-lasting and chronic condition trust me, they won't want to know. Physio is a good start, it helps if the muscles surrounding the affected joint or joints are kept as strong and as suportive as possible.

I am 'lucky' in that I have an arthritic foot in both camps, I began with an auto-immune type and the joint damage from that has led to OA in five joints, five useful joints they are too but then aren't they all? I think you need to wait for a little more detail, it took me a long time to be diagnosed and no matter what I tried the outcome was not altered - it rarely is. Personally I am happy that I had no idea what was awaiting me but my journey is not yours and yours won't be the same as mine.

What have your symptome been so far? DD

dibdab

Hi there, nice to meet you!

I guess if I had one word of advice it would be keep asking questions until you understand what your diagnosis is and how it will be treated. I have RA, and in my experience there aren't any quick fixes but rather a long process of trying different treatments until you find the one that gives you the best quality of life.

Deb x

Kittkat

What I wish someone told me is :
* do not read the internet there's WAY too much negative stuff.
* early treatment is best do not put it off
* just because someone else can't do this that or the other- don't let people tell you what you can or can't do
* a healthy diet is good but restrictive diets are hard work so just try the best you can. My parents have had good results from glucosamine despite what the studies say.
* do exercise that doesn't push your body too much. Losing weight helps ( if you are over weight)
* the people that are doing well DO NOT post on this forum, remember that
* don't worry
My experience with rheumatology has been really good so far. I wish I got treated sooner.

constable

HI there and welcome.

I have OA, had a hip replacement over two years ago now. I was lucky that from me going to the doctor and then being referred to a specialist was very quick and it was on N.H.S.

As already been said, don't go looking to much on the internet. You can get yourself in a right state. Just keeping those questions coming and make sure you ask your gp.

I think as DD said sometimes it is best not to know to much yourself. I for one wished I hadn't found that I have arthritis in the other hip.

Keep yourself moving and make sure that you keep your weight down if you can.

There are loads of meds out there where you can have more than one. I think we all take a variety of them here.

Let us know what your results are wont you. And hope shall look forward to seeing you around the forum.

lizzieuk1

Well I have RA also diagnosed in my 20s am 10 years on now and can say that there are a few things I can pass on.
1. Live life don't wait around because you have arthritis
2.there are lots of treatments but no guarantees
3.it is a bumpy unpredictable ride that is ever changing
4.your friends/family never truly understand what you're going through but will support you if you let them
5.be kind to yourself and ask for help if u need it, no prizes for bravery here.
6.there is no cure and that can be the most frustrating thing but acceptance comes in time.
7. You can and will still live a fabulous life albeit slightly modified!
8.The forum is fantastic and a place where people truly understand

hileena111

Hi
Welcome to the forum. You say you will know the results next week.....wait until then and then ask more questions {of us}
A lot depends on what you are actually diagnosed with
Arthritis cant be cured but it can be managed.
That's the main thing to remember.....there are loads of things out there to help you and it is not "giving in" look at it as a coping mechanism
Keep posting please especially when you find out more about your diagnosis
Love
Hileena