Please help me with questions for the Rheumatologist

Hello

I was referred urgently by my GP to a Rheumatologist following persistent joint problems, a previously diagnosed hip bursitis, high white blood cell count, Negative Rheumatoid Factor, raised CRP and a 'weakly positive' ANA test (homogenous and speckled).

Rheumatologist ordered various x rays, ultrasounds and full spine MRI, plus further blood tests including dsDNA and in letter to GP said 'the question is whether there is something inflammatory going on related to something like a spondylarthritis CTD'.

I've seen the MRI images and whilst I have no idea what it any of them mean, you can clearly seen various black discs on my spine (so of course I have googled it and worried myself ).

My follow up Rheumatology appointment is this week. What should I ask? What are the things I need to ask or say? I have spent too much time reading on the internet and have got myself in a bit of a tizz - RA, Lupus, Connective Tissue Disease +++

My additional persistent symptoms include:

Severe Plantar Fasciits

Mouth/nose ulcers

fatigue (although the Rheumatologist didn't ask about this and I have recently attributed to over tiredness)

Numbness/pins and needles in hands/arms

neck pain + lower back pain radiating down thighs

Frequent urination

tendency towards depression.

Thank you in advance for any advice you can give. Until about 3 months ago I had joined the dots between any of these symptoms and thought it was 'just me'. But since the first Rheumatology appointment I am beginning to realise there is something going on, but what?

Avocados

10 Replies

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  • I found my first appointment quite overwhelming, there's so much information to take on board. Try writing down a chronology of your symptoms and everything you have tried so far to manage the pain/fatigue etc. You could give them a copy so they can put it in your case file. Also take someone along with you to your appointment, and make sure they know what you are hoping to get out of the appointment. As I say, it's alot of information to take on board. They will be able to help you recall all of the information/advice/diagnostic procedures/treatment plans that will be discussed during the appointment. Hope it goes ok.

  • Thank you. There's no one i can take with me as no one else knows I'm going but I do plan to take in some notes but I'm not at yet what to write in my bus notes...

  • Hey Avocados - I use Da Google a lot for research, and try to vet my sources before I go too far. But I would recommend that you not worry yourself too much, because you can make your disease (whatever it is) worse due to the stress.

    Sit down with a journal, and write down everything that you are feeling, when you feel it, and how bad on a scale of one to ten (1 is low, 10 is extremely high). Take pictures if you are experiencing swelling and inflammation. Write down what you had to eat or drink before your symptoms started. Write down what questions you have in a separate section so that you remember to ask everything you need to, and take notes when you talk with the doc.

    You seem to have an great many things going on, so don't guess. Just work more on documenting what you are going through.. Best of luck in them getting to your diagnosis / diagnoses...

  • Thank you for your helpful reply. Most of the time I'm sensible but sometimes my mind wanders and i worry. I'll report back later in the week. Thanks again

  • Hi, I agree with whats been said. Take your list. Try to write when you first got these symptoms, how often and if anything makes them worse. It helps to keep you focused. Trouble is there are so many different problems that could cause the symptoms we get as they are so random. It could be inflammation which is causing nerve interference for example. Many doctors look for one answer when there is a problem and we have also had a virus! That why repeated bloods are important to see if they differ. Don't worry your self with google searches. Let the doctors work through their process, sometimes it takes a while but they get there.

  • Hi, I cannot share all your symptoms but some I recognise. I have sometimes excruciating pain in the hip, plus pins and needles in my leg plus pain in the back. I cannot sleep for pain and painkillers do not help. I had epidural injection and cortison injections.in the back. A little relief but the pain always comes back. Now I can't walk properly which is most upsetting because I can't leave the house for long. Can't walk more than 200 m. I loved my walks with my dog and all of this is now forgotten. I used to go to the gym and really enjoyed it but now I am almot housebound. so yes I understand that you despair, so do I from time to time. It is hard to keep the chin up. I don't know how many people will share your problem, or mine come to it , but there must be many people somewhere who have similar pains. But advice, i can't give you, sorry. I am looking for help myself , and hope that my next visit to the consultant will point the way out of this. I wish you well and hope you find some answers soon.

  • Thank you. I'm discovering that there are so many people experiencing similar (yet different) things. I'm sorry things are tough for you right now. I empathise. I'm sat herr and my neck hurts so much I feel my head is too heavy it might fall off. Like you the pain relief I've tried (only ibuprofen so far) doesn't do much. Let's stay in touch

  • arthritisindia.net/rheumato...

    this might be helpful

  • Thank you

  • This is a world where there are many overlapping symptoms and diseases, so you do really need a rheumatologist to sort out which things are the main indicators as it's very easy (especially with Dr Google) to focus on the wrong things. MRI's for example can be complicated to interpret and black discs could quite easily be a normal part of your spinal structure rather than anything alarming.

    As others have said, list your symptoms and timeline. And then think of the things you want to know - like what are next steps, what are treatment options, how sure are you that this is what I have etc etc, as it's your opportunity to ask all the questions and if you're anything like me you'll forget half of them until you walk out of the door afterwards. Ask about follow up, as many places have a helpline you can call if you are diagnosed with one of these diseases.

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