So frustrated. My rheumatologist after seeing me once is happy not to see me again.
I received a letter that said as there was no active arthritis in my xrays and MRI and clear bloods, that she is happy to wait until towards the end of this year to see me again. Even though during my last (and 1st appointment) with her she offered me help to get dressed as I was struggling, despite being 24.
So despite the synovial thickening in my toes and fingers, face rash across my cheeks, joint pain, swelling and stiffness, numbness and pins + needles in fingers and toes, dry eyes and eyes, nail problems, hip issues, eye floaters in vision and skin rashes- I just need to get on with it. No explanation as to why I suffer from these things and as to what could be wrong.
She concluded her letter that it would be unlikely that she could offer me any additional treatment- so that means for me that I continue taking paracemtol, codeine and amtripline for the foreseeable future.
I just feel disappointed- I hoped she would give me answers but because nothing straight forward came up in my bloods- it feels like another medical professional who has given up on me.
I am confused by my issues being caused by an infection, as I had no big illness so to speak before this. I just went to bed and became sore with my joints one day and didn't get better. Things started and new symptoms developed over a 6 month period.
Sorry if this is the wrong place to post this- I just feel really disappointed and set aside just to get on with things. Any advice? What do I do now?
I just feel that I have been left to deal with feeling the pain every day. Fed up of having to explain myself to people- who don't understand because they don't experience it.
Written by
BlackNov
To view profiles and participate in discussions please or .
Hi. Just want you to know someone was listening. Im sorry for your plight...you must feel terribly frustrated. It might seem a bit of a last resort but if your hospital has got a Pals scheme theyre usually good at shaking things up. Hospital websites usually have a link.
Hello Paul, I just feel really frustrated and I don't really know what to do now. My hospital is in Dundee- so I will check to see if there is a PAL scheme- it couldn't hurt! I have never heard of it before so I need to do some reading Thank you for responding- in a weird way it was just nice to feel that someone was listening. I hope you have a lovely weekend.
I think I will need to go back to see him. Unfortunately the last time I saw him- he said he couldn't help and that my questions needed to be kept for the Rheumatologist. Might as well try again. Back to the GP I go! Thank you for messaging Ruth12345.
While you are at your GP ask him to do blood test for Lupus SLE. A lot of your symptoms are a possible, especially the facial rash and sjorgans syndrome. I myself has SLE and it took me years to get a diagnosis. Although mostly women have lupus men can also get it.
If it is lupus there is many types of medications to help you. Also you can have a look at the lupus uk website, there you will be able to find more information.
If it isn't, then your doctors can rule it out, either way it is worth trying, but whatever you decide good luck, sorry it's a little long.
This might seem a strange question- but would that mean that my current Rheumatologist wouldn't see me anymore? My hospital is in Dundee and I don't know if they have many other Rheumatologists.
This is all so new to me- and I am worried about annoying the Rheumatologist in case I then have no one who can help me. Have you ever asked to be referred to someone else before? Thank you for messaging me - I really appreciate it.
I'd hotfoot it back to your GP. That rash on your face sounds a bit like lupus. I've had RA for 34 years, was very quiet, didn't like to make a fuss , turned out my right knee was in a terrible state and I needed another replacement. I could have told them that, I dragged it around bone on bone for a very long time. Had I shouted and made a fuss it would have happened sooner. Believe me, I've discovered it doesn't pay to be quiet. Good luck, so sorry you're hurting.
Thanks Sylvi- I will try and see my GP for a chat. I guess I just had all my hopes pinned on this one being able to help me. Hope you have a lovely weekend.
Hello miss-otis and RAgemz81, my rheumatologist said my rash wasn't lupus as it starts to fade once I go back into a dark room. Sunlight and fluorescent lighting seem to really aggravate it. She said it could be from a different condition. And the same for my mouth and nose ulcers. She thought sjrogens or psoriatic arthritis were options but said that my symptoms were a mixture across lots of the different types of conditions. If that makes any sense?! Sorry I know my wording isn't the best and I am still trying to understand it myself. I just hoped that I would get a name so I knew what was wrong with me. Thank you to you both for taking the time to respond to me.
Please don't give up - contact your dr and ask where do I go now as I am clearly suffering- I so feel for you and you are so young - it's a real battle to get results these days but fight for your right to be diagnosed - I wish you all the best.
Thanks carol555. I think last night I just felt a bit alone and deflated. It is really difficult to see the same GP at my practice, but I will try and get an app with my original GP. After seeing all these responses- it has motivated me to try again! Thank you for messaging- best wishes.
Sorry that you’ve been let down, unheard. My bloods were & are always ‘borderline ‘ so rheumatologist treats me for symptoms I display not the blood results.
I just feel left to just deal with it. I know that you have to do that, but I just hoped that I would have had some questions answered. Thanks for the good luck Caza- I am going to need It!
It sounds as if you may be one of the people who have some sort of crossover disease (like rhupus which is a crossover or RA and lupus) or less usual primary disease like Sjorgens. And at an early stage as well, so with no hard evidence showing. Sorry for you as this is miserable as you will have to push to get treated...but equally you could have a reactive arthritis that will go away usually within a year.
Anyway, the only things I can suggest are first to get copies of all your tests, if you haven't already done so, and check that they have covered all the bases for all these diseases. And if there are tests missing push your GP to do them for you. Plus standards like B12 and Vit D as deficiencies in these can wreak havoc in your body.
Then look at self help, and check that you are living as well as you can to support a healthy body. I don't personally support more extreme approches, but basic diet changes like avoiding all processed food and sticking to simple foods with lots vegetables and fish and little fats and sugars. Make sure you sleep well, and take some daily exercise. If you smoke, then stop. And if you are overweight try to sort that too.
Take regulat notes and photos of symptoms, and think about asking GP about referring to another specialist.
Can't think of anything else, except perhaps save up for a private consultation just in case.
Hello Helixhelix, thank you for taking the time to respond to me. The rheumatologist did mention that she thought sjrogens and psoriatic arthritis were options but said that my symptoms were a mixture across lots of the different types of conditions. She also mentioned mixes connective tissue as some thing to think about. The X-ray person said he thought it was reactive arthritis and would be writing that in his report. Whilst I would be delighted if this was reactive and it would all go away- I am not really convinced that it is what i have. Due to my extensive family history with autoimmune conditions, my mum has very similar symptoms to me which she has suffered throughout her life and still doesn't have a diagnosis. Also i didn't have a virus or infection that I knew of at the time when this started.
I will go and get a copy of my notes. This might a silly question but hopefully you know the answer- do you ask your GP practice or your rheumatologist for your results?
I will ask whether I have been tested for vitamin or thyroid issues, because I am pretty sure that this hasn't been done.
I could probably save enough for one app privately, but what is worrying me is that if they ask for tests to be done that the costs could just spiral. My husband is a law student and I am trying my best to work as close to full time hours as I can manage at the moment without making myself ill.
I have been trying to eat better however I am sure everyone could always improve in that department- so your message has been a little reminder to try harder! 😊 hope all is well with you helixhelix
It seems you have undifferentiated connective tissue disease - so that's a name. Because yes it helps to have one.
You should be able to copies of letters from either rheumy or GP, so whichever is easy for you as a starting place. And for test results, depends if they were sent to GP as well as rheumy. So perhaps start by asking rheumatology secretary. If you don't have the number phone hospital and ask to be put through.
If you see a Rheumatology consultant privately they normally copy you the letter they write to your GP...so you will see what tests the rheumatologist suggests & you can ask the GP to request them on the NHS.
When you make a first appointment for a Private consultation which is not covered by medical insurance ( in England...don't know about Scotland) the consultant's secretary will tell you the cost of the consultation & the cost of any tests the rheumatologist will need.
As you thought it does add up.
I recently paid £500 in total for a dermatology consultation, a biopsy & the report from the pathologist & the follow up dermatology consult. Private Hospitals charge as well.....as far as I can see for going in to the hospital & sitting on their chair! That was included in the £500.
Try to push your GP to find a rheumatologist who has a more dedicated interest in Lupus & Sjogrens.....they are are more likely to think outside the box than a doctor who is more interested in RA.
Get a second opinion, you can ask your GP to refer you somewhere else, and make a complaint to the hospital. You can’t keep suffering like this, especially at only 24.
Thanks ruth_p. I think because I am new to this- I wasn't sure if it was standard practice etc. I think I will ask for another referral. Thanks for sending me a response- it was really nice to feel listened to.
Bless u. I think u need a 2nd opinion and if u ask they have to provide it!!!
I'm struggling for a diagnosis too. Was diagnosed with sero neg RA Dec 2015 then around Easter last year they thought it may be fibromyalgia, lupas or a connective tissue disease. Now June 2018 and I've had all meds changed to fibro meds and I'm in absolute agony. Can't walk so on crutches and using wheelchair. Have a new rheumy appointment on 18th so after seeing rheumy nurse middle of May I'd of been left suffering for 6 weeks!!!!! Rheumys needs to see me as I am so they won't touch my meds.
Always fight them!!! It's your body not theirs xxx
Hello RAgemz81, I am just tired of all the tests and trying to get time off work. It just feels like I am back to square 1. I think I definently need to look into a second opinion. I am so sorry to hear you are in so much pain. I am sore everyday but it is manageable. I can still walk and get about- i just am slower and have changed what I can and can't do (My husband is forever having to help me with opening things, waiting patiently for me to put my shoes on etc) can't imagine how you feel at the moment. I didn't realise that they could change their mind with what the diagnosis is. I hope you get better medication soon- I have been using CBD for the bad days.
Thank you for the reminder. You are totally right- I am just tired because it really feels like a fight to get help.
Sorry you are in this-undiagnosed situation . Please consider asking your GP to test your B12 levels , as a lot of your symptoms are similar to my husbands who has Pernicious Anemea / B12 deficiency , . Sometimes they will say your result is normal so ask receptionist for a print out of your results as could be borderline , also will give you a baseline to see if levels are dropping which means you can’t absorb b12 in the gut and need regular b12 injections for life , also folic to help utilise it . Please consider researching B 12 deficiency . Best of luck .p.s avoid vitamin tablets until tested as can skew results , . Take care .
Thank you Annnon58. That was really kind of you to respond. My doctors have never mentioned a vitamin deficiency to me so I will ask my GP when I get an app. I dont have any results yet but will ask. I don' know anything about my bloods except the GP always says they are clear. I haven't heard of pernicious anema and will need to do some reading. I hope you and your husband have a lovely weekend.
I am very sorry to hear of your plight to get answers to your health, all your reply’s give you good advice as to what to do and who to contact first, if at the end you are getting nowhere then in my opinion that is the time to tell then you are more then a number and you need answers, l know this sounds a bit harsh but start demanding instead of asking it’s your health they should be concerned about and nothing else
Hi, totally understand your frustration, we build our hopes up on that one precious appointment and it's so disappointing when it's a blind end. Hoping you have a sympathetic GP. Good advice above, harness that frustration to push on for a second opinion. Hoping you get some answers soon.
Hello dianeuk, thank you for your kind message and for understanding my frustration. I shouldn't have built my hopes up but I did. I hope you have a lovely weekend. Best wishes
Hi BlackNov, please go back to your GP and don't give up. You don't say if you've had any biopsies done, how long do your rashes last and where they are apart from across your face. Maybe ask your GP if a skin biopsy could be the way to go. My rash is on my back mostly and can and does last for weeks and even months. So had to go to skin clinic where after treatment for allergies didn't work they done a biopsy. They just took one of the spots and sent it to the Lab, result at first Urticarial Vasculitis. Now not sure if its just UV as other symptoms are present that point to a different type of vasculitis, in fact all symptoms wax and wane.
I get pain in my feet and at times walk like King Kong's mother and also have pain and swelling of the abdomen and loads of other things.
Blood test have shown I have c-anca positive and now I have a b12/folate deficiency.
B12/folate deficiency can cause all sort's of problems in it self.
As some one has said by the rash across your face it may or may not be Lupus. So do see if your GP can arrange a skin biopsy. Most GP's will never come across some one with an autoimmune disease so don't/can't make a diagnoses. They also just tend to treat each symptom as it comes along.
So don't give up, keep asking why and could they be link together sooner or later they will join the dots and then bingo. It just takes time I'm afraid as these disease's of the autoimmune system are not common and you could well be the only one your surgery will have.
Hello Boudica1, thank you for your message it made a lot of sense. I think I need to talk about vitamin deficiency with my GP- as a few replies have mentioned that here and its not something that I have discussed with them before. Not sure what my rash is about and whether it is just one of those things- but sunlight and fluorescent lighting seems to bring it on for me. Going into a dark room helps it start to calm down. Then it will restart the next day once i go out. Which is why my rheumatologist isnt thinking lupus. Thank you for mentioning a skin biopsy- certainly something for me to think about. Best wishes to you.
Hi, the why you describe the rash it does seem to be a hypo-sensitive re-action but it may still help to have it biopsied. Maybe try looking on the Vasculitis page as well because like RA vasculitis is an autoimmune disease. All of which can not only cross over but give very confusing symptoms.
Remember one thing autoimmune disease's are not common and are a devil to diagnose.
Also there are reason's why people have B12/folate deficiency, so unless you are a veggie/vegan who are more prone to it, it may need to be checked out as to why.
Hope all this help's and don't give up there is all ways a reason.
Your body is telling you something is not right but has got confused as to what it is. Same as the doctor's.
Hi I suffered for years before it got severe enough to show in my bloods. Its awful that that is the way it works but what my rhemy said maybe is very early signs of a autoimmune problem but if that if I started those medications without showing active disease in my bloods that they would have no where to go with medication when the disease did eventually show in my blood. Its so awful because they are not helpful at all. They said I had fibromyalgia for a long time even though I knew I didn't have it. They also said it was psychosomatic due to fertility problems I was having which again was ridiculous. Eventually I got so bad that I was unable to stand or bend my fingers and I took to health insurance and went private. My bloods were off the scale and then everything. Changed. So much support. It was such a traumatic experience and I'm always worried that some one is going to say 'oops no you dont have RA ' .... I really would suggest going private to the best rheumy in your area. My GP was so helpful in getting me in touch with the right doctor and after my diagnosis he put me on the nhs list so I could always see him
Thank you for your message Ouchyjenna. Sounds like you have had such a hard time trying to get your diagnosis. I know it must be tricky for them as nothing is showing in my bloods- it is just frustrating that the other symptoms don't help narrow it down. I will speak to my GP and see what he recommends. I hope you had a nice weekend
Hello Ladyinredxx, happy to hear that you have your diagnosis and medication now. I might have to look into private treatment as it seems to really help a lot of people in the early days. Thank you for your kind message- it really cheered me up 😊
Hi lovely .i can.t put it any better than helix helix has done .but it makes me so sad that you felt so alone during the night.
We.ve all been there and you did the right thing .texting here to these lovely people .there is someone up at all times can.t sleep or in pain .and you will get an answer .
Good luck darling .go back to your GP talk to him . Keep asking questions.gentle hugs kathy x
I was kinda opposite of you. My family doctor kept telling me for over 3 years there was nothing wrong with me. I knew he was wrong. My doctor relied on a blood test and ignored physical findings, such a as finger frozen in a abnormal bent position, excruciating joint pain, and told me RA doesn’t run in families. He also told me my X-rays were fine. Finally I got to a Rheumatologist and very quickly diagnosed. My Rheumy did new X-rays which showed bone erosions in three joints.
I went back to my family doctor and he told me the Rheumatologist
Wasn’t sure I had RA. I looked at my family doctor and said “that’s not what the Rheumatologist said at all, I am diagnosed with RA and it’s already advanced to bone erosions, my blood tests in themselves indicated high levels of inflammation. My family doctor looked in my file and took out the X-ray and put it up on the light board. Then he said “oh so you do”
I now have a new family doctor.
You have to be your own advocate. Some doctors will not look out for your best interest. My family doctor went through a bitter divorce and lost a lot, he seemed to ‘hate’ any middle aged women and I think his ability to give care was compromised. I know similar stories from ready MD Review, where actual patients can post there good or bad experiences.
Last time I heard my old PCP was under investigation for using dirty tools and possible HIV and Hepititis
Contamination from reused vials of various injections. Anyone who saw him between 1972-present had to get a blood test to see if they got hepitis or HIV
Please! Ask for a referral to another doctor for a second opinion. After reading your post, have they done an ANA test to see if you have Lupis? It presents similar to RA and has face rash like a butterfly.
It sounds more like lupus. A lot of times with any rheumatic disease blood tests are negative early on in the disease. I would seek out a different rheumatologist. As for the codeine...you can get hooked on that stuff. Also it might help if you knew if anybody in your distant or current family have any rheumatic diseases because a lot of times these are inherited.
Sounds like possible psoriatic arthritis which is notoriously under diagnosed...took me 3 rheumatologists...2 years and lots of pain until I found the right doc. You can research online to find a specialist in this area...then ask your gp to refer u.....anywhere in uk but obviously as close as possible for u.
There are some types of arthritis that cause no damage (so scans wouldn't show anything) and there are also other conditions that could cause symptoms like this.
Maybe see if you can get a second opinion. Potentially even look into private if you aren't already.
I can sympathies a bit. I was diagnosed with PR, went back with different symptoms, got told it won't be PR anymore and also won't be anything else. Best option they had for me is symptomatic treatment. Felt like a right slap in the face.
So I figure it's time to see a different discipline and see what they can make off all this. Gunna keep going as long as I can cos clearly there is something up and I figure it's pretty reasonable to want to know what that is.
It is totally fine to be pissed off by all this and to want more answers (and hopefully something to improve things). After all you're the one feeling all this messing with your body. You can't just walk away from it until later in the year.
Keep on fighting. We're all here with you. On this bright side all this does help narrow things down, even if it hasn't led to anything directly. All progress is good progress.
Hi there.
i understand your fustration. I hope that you are ok. When i hear symptoms like numbness and tingling i think of vitamin b12 and vitamin b1 deficiency. They give a host of symptoms and affect nerves.
The testing system isnt perfect. The bcsh guidelines on vitamin b12 have been changed as the test isnt reliable. There has also been some controversy over the thyroid tests too. If you join thyriod uk you will learn more. There is also a Scottish thyriod petition on you tube. Are they sure its not lupus? Thats another illness hard to diagnose. I had a borderline positive for that (undiagnosed though), b12 deficiency and thyriod issues. I was like you and for yrs got no help.
Please don't give up! I am much older then you but at the start of my journey, they thought I needed psychiatric care, not MD specialists (which hurt my feelings but I did it because I wondered if I was "loosing my mind" as well!).
I've now been diagnosed with RA and am back in testing for MS. Basically I've never fit neatly into any box, the RA is pronounced now and obvious but it wasn't at first. With another neurologic issue, it just muddied the waters. Which makes me sort of baffled, you couldn't help me because I was TOO sick?!?!?! But basically, I had too many boxes, and no one knew what to do with me.
I haven't been diagnosed with MS but they realize there's something else going on. But it took awhile for them to realize I had several things, that's why they couldn't figure it out. I wonder if it's Lupus with RA but I guess I'll get where-ever I'm going at some point. (my last MRI was Sunday and I haven't heard back from neurologist).
Hang in there! It's a really hard place to be where you are right now. There is help, I promise, but I had to learn to find my voice. Keep us updated!
I just want to clarify I never said I was going to make a complaint or suggested neglience, and had never even heard of PAL until another member suggested it. In my ultrasound I was told that I had active arthritis a month ago and that there are changes to my joints re synovial fluid thickening. I already waited 6 months to see the Rheumatologist, I just would have hoped for a proper discussion rather than a letter and an additional 6 months wait, as I have questions in particular the problems with my vision and with my hips. This will have to wait now.
I know the treatment of auto immune is not an exact art and it can be difficult. Thanks for replying. Best wishes.
I would get another opinion to see if there is something she missed. There is certain test she may not have done. It took me almost a year before answers were found. Do not give up, make a journal and keep track what is going on and when. This will help in the long run There is a list of autoimmune that are alike. Check into it for
Hi there, I suggest call the excellent NRAS helpline on Monday and seek their advice. I had trouble getting diagnosed as have a type that doesn’t show on traditional tests. NRAS equipped me with what to say and who to push. Also take a look at the NICE guidelines for RA referrals which it sounds like your symptoms fit into and point these out to your GP. as soon as I referenced these I got more action. In your situation I would not want to wait another 6 months in case of damage occurring, let alone 6 more months of misery. Try rheum nurse helpline if possible as for me this gives a different access route into hospital treatment , and I would also consider PALS help. For me I feel uncomfortable agitating on my own behalf so I ask myself what would I do if one of my children was the patient- I know I would persist for them until they get treated and then I try to think of myself as one of them that I have to speak up for (if that makes sense) which makes it easier to act on my own behalf.
Keep on at your GP and insist on a second opinion. It took me years before I was diagnosed and a year before i was even seen by a rheumatologist as RA didn’t show in tests. You cannot give up! Speak to NRAS and PALS too and see if they can help. Stay strong and I know for some people pestering the gp/ doctors can be hard but you have to till you get answers! Speak to others and research this group is great for support and gaining knowledge. Hang on in there 💪😊x
sorry 4your pain!. W/out clear diagnosis it must be awful. A close friend has negative bloods for RA etc, and AB neg blood type, swelling and inflammation but not sig crp, etc, They are treating her 'as if' RA ... best guess so you are not alone. can you ask your gp abt alternative tests / specialists ?
Thanks whaleroad. I definitely will look into it. I think there might be one or two more in the department. So interesting to hear that you had joint changes without the tests picking up on your active inflammation. I didn't realise that could happen! Hope all is well with you.
That’s terrible what your going through. Any chance you can see a different RA specialist ?
BlackNov ..the system is slightly different in Scotland. Do Googleyour health board website for information, there us no automatic right to a second opinion in Scotland....the process is to ask your GP for a new referral, they will do this, other wise they must give you a written response outlining why they won't do this. No GP will undertake this route as they are creating a written record which could be used against them. The GP could also ask for a quick referral if your condition is deteriorating.
Just read your post and I'm at the same stage as you, but slightly different outcome. I have almost the same symptoms but I have rash on my hand.
My first rheumy referral was in May in Aberdeen. Had discussion re symptoms, physical examination, bloods and x-rays taken. They said they would send letter to my GP who would call me with results.
No call from GP then received a letter from rheumy with a follow up appointment for Sept.
Called rheumy dept to ask if this was normal as I expected to be discharged to my GP. Asked if this meant they had found something? They said it was standard practice just to discuss the results.
So now I have a long wait until Sept to find out what's happening but straight away our experiences have been different between 2 Scottish hospitals.
I'd be quite interested in keeping in touch with you along your journey if that's ok?
I.was in the same situation you are about 20 years ago, I mentioned to her, what have you done for me, I have been coming to you for six months, what have you done. You haven't sent me to the hospital to get it checked what I have got.
I finally got heard, and was sent to the hospital, and my Rhumotologist was very good , he spent 2 hours, telling me if I would have come earlier things wouldn't be as bad as they were.
At first I was put on an injection, but that made no difference, then he started me on Salfalsalazine, and made a difference in about 3 to 6 months. You are definitely in the right place, as we all have different ranges of pain relief.
Hi BlackNov, sorry to read about your journey to receive treatment for your condition. I call recall endless visits to my GP before I was diagnosed with Dermatomyositis. This condition is quite rare. I have facial rash, rash across my chest and top section of my back. Very weak muscles. Skin that is under constant attack from itch. No strength to dress yourself or wash. During that period of waiting to be diagnosed was a nightmare. Thankfully, I am now on drugs to help me cope a little better, but quality of life is not great. Auto Immune conditions are very difficult to pin point. Please go back to your GP if in the time you feel worse before seeing the Rhuemy again. You should not be left to suffer. Good Luck.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Swollen joints but normal CRP
Received letter this morning feeling terrified 
Hands,knees,and,toes
fingers and swelling hands
Feeling sad
