7 months and still no diagnosis
Posted , 5 users are following.
Hey, Not sure what im wanting from this post but im just feeling so down.
Im currently being investigated for seronegative RA. Ive just got back from my local doctors as yesterday my hip gave way and with a crunch afterwards i was then left in agonizing pain. i never usually worry about going to the doctors as it normally passes after taken painkillers but when i didn't sleep at all well and i was still in a lot of pain this morning i thought i should probably get it checked out. The doctor wasn't very helpful and just chucked more painkillers at me ( not sure what i was expecting) but he couldn't even tell me what the pain was or weather it had done any more damage. He said about taking more blood to test for inflammation but as thats always been negative im guessing it will again. I think i just feel so fed up of the pain, im 36 and have an 11 year old dd and just want to be able to run around with her and play like i use to but now i cant as either im already in pain or it causes me pain. i have not got my follow up appointment with the consultant until 20th October which feels like a million years away right now. Ive had bone scans and an MRI on my knee. i just want to no whats wrong and what treatment i can have to help/give me a break from this on going pain. sorry for the ramble and well done if you got this far...not sure it even makes much sense.
louise
0 likes, 10 replies
linda23834 louise_77823
Posted
Hi Louise, sorry to hear you are having a rough time, it cant be much fun when you have a young child to look after. Unfortunately, it does take a long time to go through the system, to have all the tests needed and eventually get a diagnosis and the treatment which will work for you.
at least you have an appointment with a consultant and I hope things start moving. I have seronegative rheaumatoid Arthritis, it is in my knees, feet. Hands and neck. At first it started in 1 foot, so painful, I couldn't put any weight on it. Very swollen and hot, I was told it was an injury, which I didn't remember doing. Then it started in the other foot. It then changed to psoriatic Arthritis, although I didn't suffer with Psoriasis. I had blood tests at the hospital, X-rays and an MRI scan which showed inflammation around the bones in my foot. I was put on Methotrexate an a number of other drugs, until we found 1 that worked and helped me. My specialist now says it is Serenegative arthritis which doesn't show in the blood tests. It is quite common on this forum,
although you feel you are the only person to have it and wonder why it doesn't show in the blood. I am sure you will hear from other people with good advice, what you are feeling is normal, frustration, fed up of being in pain and also feeling low that you cant do what you want to. I have 5 Grandchildren and used to go on slides, swings, anything I could, unfortunately I cant now. But we still have fun in other ways and if the medication starts to work, I'm sure you will be able to do more.
lets hope you get some answers in October, I have learnt that you have to pace yourself, harder to do when you have children. You cant do everything in 1 day.
good luck and feel free to ask us all anything.
carol303055 louise_77823
Posted
Hi Louise, it's a bit of a recurrent theme on this forum, people feeling so low due to delayed diagnosis, intolerable pain and reduced function. It will get better. It will! 7 months is a long time and virtually another 2 months is too long. Is there another, more empathetic, GP you can see? Can you phone the rheumatologist secretary and impress upon them how awful things are and is there any possibility of a cancellation? You do need to be taking medication agreed with your doctors but I'm sure they could come up with something better in the interim to relieve your symptoms till you do get to see the consultant. I too have been in absolutely terrible pain, so bad I thought it was the beginning if the end but hang on in there it WILL get better. Good luck. Carol x
sonya78375 louise_77823
Posted
Hi Louise,
I also have seronegative RA, and I had to wait 6 months for my first appointment with a Rheumatologist. I was desperately in pain, and 39 and unable to even make the bed and do the groceries let alone work and look after my kids. However, unlike yours, my GP was really awesome. She put me on Prednisone (steroids) which hit the inflammation to make it bearable until I saw the Rheumatologist. I agree with Carol that you should try another GP - you've got ample evidence that this is inflammation, and there is stuff your GP can do.
And whatever happens, October will roll around and then you truly will eventually get relief. After all sorts of drugs and periods of time I can now run, surf, work and play again, it's amazing. All the best to you from Sonya.
louise_77823
Posted
Sonya that last paragraph made me cry, its being able to hear stories like yours that make me feel like there is an ending and this is not my life from now on.
ill let you know what the outcome of today is and hopefully we will have an appointment asap with the consultant.
Louise.
sonya78375 louise_77823
Posted
That's so great Louise! :-) xxx
carol303055 louise_77823
Posted
Excellent! I hope you get some answers soon. At least then you know what you're up against! Just to let you know, I had an episode when I got down my stairs (I don't know how) my husband had to wedge a drink in my hands, I couldn't reach to the table beside me because of the pain in my elbows, shoulders and hands. I really felt like I couldn't live like this. Things did settle down with steroids I think and last week my 4 year old grandson wanted to play out in the street with his ball. Despite my husband's protests I went out and we played. Now I shouldn't run due to a knee replacement and I did pay for it a bit the day after but I had a lovely time and you will again, just like Sonya said. Do let us know how you get on. Carol x
syedq51 louise_77823
Posted
louise_77823
Posted
Hi, just to let you know the outcome of my appointment today. So my consultant confirmed that I have seronegitive RA. I also have a separate issue with my knee which he thinks will require surgery, so is going to refer me to the surgeons! He has given me methotrexate and some anti inflammatory' s that I can't remember the name of. How long after starting methotrexate did you see any kind of improvement? He said not to expect anything for 5-6 weeks. Is this your experience? I feel kind of weird having a diagnosis, I felt relived earlier and now I feel scared I think. I'm guessing it will take a while to sink in. Thanks for listening/reading.
Louise.
carol303055 louise_77823
Posted
Hi Louise, it's good to hear from you. I suspect you have lots going around your head at the minute but I hope you start getting some relief soon. I don't know if you started any steroids but prednisolone can be really helpful in the short term (I was very reluctant initially). Take care. Carol x
linda23834 louise_77823
Posted
Hi Louise, so pleased you have a diagnosis at last and at least you are getting some treatment. It is a relief in 1 way, but then it takes time to get your head around it. I hope the Methotrexate helps you and yes it does take time to have an effect. The anti inflammatory should also help. Everyone reacts differently to each drug, let's hope you start having some improvement. Fingers crossed. Any queries you have, just ask us. I'm sure everyone will try and help. Take care.