Hello all, well after much hassle I’ve got my nhs appointment. I paid £200 for private 2 weeks ago, got the report back, I have a bone spur in shoulder, never been able to lift it high for years? A lump on base of big toe, bit sore and ganglion on left hand.left thumb painful.
Specialist examined me and said I have a condition where my joints creak and pop,
Upshot being he diagnosed osteoarthritis as there is no sighs of swelling.(Wedding ring still fits)
Anyway, I’m worried. About going to nhs as my consultant saint cancel it, what do you think, I don’t want to be labelled a time waster, although I am seeing a different consultant they are both at the same hospital.
Do I cancel and accept the first diagnosis or soldier on.
Have any of you had similar experiences?
Sorry for my going on a bit, enjoy the weather before the weekend storms.
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Wirtgen
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My opinion a second opinion doesn’t hurt. Your still entitled to a nhs appointment irrelevant if had a private one
Yes do get a second opinion as you are lucky to have that chance. The NHS consultant will open up access to other NHS therapists and professionals like MSK consultant, Pain clinic, physiotherapists etc should it be thought they could help you.
Did you have more blood tests done ? Did they show up anything indicating you might have RA? Believe me...Rheumatologists don’t turn away Private patients on a whim....if there was any possibility you have RA ....he would have wanted to see you again,
He is far more likely to have correctly diagnosed you than your GP.....who simply thought you might have RA.
If you go ahead with the NHS appointment if I were you I would telephone to make sure who you will be seeing......these days one quite often doesn’t see the consultant you think you are going to see.....might be rather embarrassing if it turned out to be the doctor you had just seen privately wouldn’t it?
It’s a different consultant.no more blood tests just ones taken by doctor , it was 35 UL:decent chat with him but as I said no inflammation. It’s a minefield isn’t it. I’m not saying I don’t trust him but there seems to be many variables
You misunderstood me ...you may have a letter saying you’re seeing Dr Brown but it is quite likely on the NHS .- . when you get to your appointment you will be seeing Dr Smith & if Dr Smith was the consultant you have just seen Privately...as I said it may be a bit embarrassing?
Why are you so convinced you have RA ? None of the symptoms you describe are particularly typical of RA....they are as the consultant rheumatologist has diagnosed typical of osteoarthritis....which is just as painful to deal with as R.A......I do know as I have both.
I suppose you could go from doctor to doctor looking for the diagnosis you think you should get .....but you just paid out a lot of money for a Private consultation with a highly qualified rheumatology Consultant.......don’t you think it’s much better to accept what he has told you & go back to your GP, & get some treatment for what the consultant diagnosed you to have? If you get some pain relief for those conditions ....hopefully you will be more comfortable & stop worrying?
Believe me, I’m not wishing RA on me. It’s just thro this forum it appears RA is very unforgiving, even if bloods are correct and not abnormal it could still be lurking in the background, just want to give myself the best chance.
Maybe I should count my blessings and leave it at that.
For the time being, I think that is a good idea. After all....you have already taken the steps anybody who thought they were being ignored or misdiagnosed would take haven’t you?
You have paid to see a consultant rheumatologist Privately to put your mind at rest...but you don’t seem able to accept his opinion......what else do you think should happen?
On the whole the people here who have not been able to accept their treatment is working, have usually been on drugs that really disagreed with them ...so their symptoms did not change, but once they got onto the right drugs they were content they were having the right treatment....but they had blood test results to back up a rheumatoid disease & you have just been told you are not suffering from rheumatoid ....but osteo arthritis.
Yes, those with sero negative rheumatoid arthritis do sometimes have difficulty with their diagnosis...but if the private rheumatologist you have just seen had any thoughts at all that you might have a rheumatoid disease, he would have sent you forward for further tests.
If I were you I would wait until your GP has received the Rheumatologist’s report, then book an appointment & see what he advises to help with your discomfort.
Do continue reading here ...but don’t try to identify with those who possibly you followed before....as long as you inform your GP of any change in your condition you will be doing the right thing.
Not wishing to split hairs but as a patient you can ask to see the doctor whose name is on your letter. I have done and it’s fine at my hospital but sometimes you may have a slightly longer wait.
Most appointment letters these days say you will see Dr X or one of his team.
Prior to consult the consultant himself usually decides which patients he would like to see personally...obviously he will choose those who have the most urgent need.
I am now 90% in remission..but being on a Biologic am required to be seen once every 12 months. My consult usually consists of me going in ...Dr says ‘How are you‘ I say ‘ I’m fine how are you? Bye Bye’
Yes it’s good when your appointment is quick like that and I do like it to work that way for me too!😃
I have always seen the rheumy who is the biologics specialist as the other two are excellent and one is more senior and she was my former rheumy, but she said to me the biologics rheumy knows more re the meds than she does so I should see her. I agree! All three lady rheumys are GPs first and foremost. The biologics rheumy has told me to ask for her on arrival if the letter says one of her Registrars etc, as she wants to see me. I’ve usually seen the same rheumy all the time in the past too. Yes, it usually is the most urgent cases who see the senior rheumy.
I’ve been in remission as far as any R.A. med can take anyone since early 2014 with a blip in 2015 due to lack of clinic space for my infusion.Went downhill waiting for a slot. That was initially a secretarial/admin error as I was forgotten. (Heads rolled over that apparently!) Apart from that one flare my ESR and CRP have been <5 since mid April 2014 and no inflammation and good evidence each time of the appropriate B cell depletion, so the med works and the bloods behave. That’s what we want. I do have sinus and catahhr as a side effect but it is managed. I could try change my med and find I still have those symptoms and feel worse on a different biologic.
I last saw my rheumy in January for a quick clinic visit and it is planned to see her in January 2021 which is fine by me. I’m having a 3 monthly blood test at my GP practice nurse had my pre and post infusion B cells/blood tests so I’m doing all I should be. I have spoken to my Biologics sister at length 3 weeks ago at my infusion and on the phone three times between March and September as I had a small op and she wanted to check progress etc, so it’s all worked out fine. Very grateful for that too.
At my hospital when I started Rtx I was told I needed to be seen three times a year by the NICE recommendations, even if things were going great. I think 2 infusions/seeing the nurse there and a rheumy clinic twice a year is just right. I think it will change to that permanently at ours now, given the nature of what’s happening with the virus. As long as we keep up the blood tests which I always do.
My rheumy actually requests to see me. Been keeping an eye on the side effects the last two years. Checking osteo damage. Doesn’t take long. I’m no time waster. As I said my hospital insisted on three visits a year if on Rtx so I’m fine if they’ve reduce three to two and it will be once in the last twelve months when I go in January.
I’ve been with my Rheumy for 15 years now & having been on Rtx 4 years with only a very good outcome & fortunately never having suffered with infections ...he knows I will holler if I need seeing.
RA disrupts my life enough...don’t want to see him more than once a year if at all possible.
Can understand that, but I expect I will go back at some point to seeing my rheumy twice a year as I had been doing before the crisis. My next clinic will be January and that’ll be a year since the last but these have been/are unusual times. Maybe NICE changed their guidelines for the consultations needing every three months when on biologics? I was told I was not allowed to have only one rheumy review a year, even though my bloods are excellent for the last 6 years and I’m very mobile/have no RA inflammation whatsoever. The intermittent side effects of Rtx I experience means they’ll want to see me twice a year and that’s fine by me. As I lasted 11 months from early October 2019 until early September 2020, Rtx is working brilliantly to control the RA and I’ve no need to go back six monthly for an infusion. My rheumy and nurse feel if I can I should last longer than six months but obviously some people can’t last that long. You tend to know when signs of RA return. If I find a single infusion this time means I need to go back sooner then that’s fine by them and me. I’ve a preliminary date in their diary for next time.
! I know you hear every day about wrong diagnoses but in my experience blood work does not lie and it would not be worth his reputation to misdiagnose you. Explain to hospital where you have been they all meet up down the wine bar and know each other. That way you get your second bite of the cherry and no one loses face. Good luck. 😎
I waited 9 months before RA was diagnosed and had many symptoms which disappeared when I went to see the rheumy, which was typical and frustrating! Then an isotope bone scan showed where the “hotspots” were in my joints even though I hadn’t constant inflammation at first for several months. Then it was obvious as it showed in the blood. Have you had a body scan or just the shoulder? Could you ask your GP to keep an eye on your symptoms and maybe the doc will want to do another blood test to check no changes re CRP/inflammation or RA factor present, etc. As Lola said, the NHS could provide you with access to physio and OT etc so I’d keep your appointment and say that you would like some more advice/physio for your shoulder etc. x
I would keep the NHS appointment, get a second opinion, don't tell them what the private consultant told you until they give you their side of things. It might be you need to see an NHS consultant again, and it would save going back onto a waiting list. Good luck.
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Update......
Concern about letter
Who and Why withdrew my referal to RA clinic.
Update
