First Rhumatologist appointment.

[Tiffy1992]

Hi everyone

I joined this lupus uk a while back but have not had the time to post until now!

I am not currently diagnosed with Lupus, as i'm still being investigated for what the problem is.

I started getting ill about a year and a half ago, little things at first that I ignored, then started to get symptoms that I could bo longer ignore like problems with walking etc. So I visited my GP and she got me an appointment with a neurologist. So at my first appointment I was told they thought it was either transverse mylitis or MS. So I was send to have an MRI scan of the brain and spine. I wasn't sure myself if it was MS or not, I had never heard of autoimmune diseases before as i've always been very healthy and had no reason to know! I looked up the symptoms as everyone does after being told they might have it, and some symptoms fit, but others really didn't.

So I have the MRI scan and had my follow up neurologist appointment that same day. He looked over the scan and found no lesions or abnormalities that would suggest MS. And that is when everything changed.

He went from being very understanding to insinuating that it was either all in my head, or I was making whatever it is seem worse than it was. This was completely heart breaking as I came to him for genuine help! He starting asking probing questions like "do you like your job?" And "is your job really stressful?" Instead of asking relevant questions about my symptoms and how I'm feeling. I told him about an incident at work where I collapsed. He asked if it was witnessed. So I told him that I was alone when I fell, but was told afterwards by a colleague that they heard a bang (presumably me falling down) and ran into the room. Three colleagues witnessed me being unconscious and all said that my eyes were doing a strange flickering, and the first aider said she thought it was a mild seizure, but couldn't confirm.

After telling him this he wrote a letter to my gp stating that I had a completely unwitnessed collapse! I felt so hurt that he had written a damaging lie to other health professionals!

So he starts suggesting I may have functional neurological disorder, but wouldn't explain to me what it was, he just told me to look it up. Now I understand why, as after looking it up it was suggested that a lot of doctors use this as a way of suggesting that patients are in control of their symptoms and that it is a psychological condition! This was also included into the letter to my gp, and I have not been back to her since as I was so humiliated. I was meant to have a follow up Nero appointment, but he canclled it and never rescheduled!

The only light at the end of the tunnel was that after he took a look at me, he notied that I have raynaud's syndrome and mottled skin (which he said could possibly indicate the presence of antibodies). He then asked me if I get headaches, rashes and mouth ulcers, it was a yes to all these but I didn't understand why he was asking me this. So in light of that he put me on the waiting list for a rhumatologist appointment.

I researched those symptoms he talked about online later and the only thing that came up was lupus, something I had never heard of before. When looking at the symptoms it completely fit, and also said that sometimes it can effect the nervous system, explaining the leg and eye symptoms. And in a weird stwist of events, about a year after I started getting ill, my mum got ill, turns out she had been putting up with it for a long time. She visited he doctors and had blood tests, they told her she had large levels of inflammation in the blood and suspected she had either lupus or RA.

So sorry for the long story but I wanted to highlight how badly consultants sometimes treat people! But my question is, I have my rhumatologist appointment next Wednesday, how can I prevent the same hung from happening again? How can I get them to listen and actually perform the correct tests instead of being fobbed off with anxiety etc?

I am truly desperate now, I have been living with this illness for a year and a half and it had been getting worse. I now have no social life, am close to losing the job I absolutely love because of being so ill and struggle with everyday tasks. I am only 25 and feel like my life had been taken away from me. Any advice would be great and again sorry for the long post!

Tiff

[Paul_Howard Partner LUPUS UK]

Hi Tiffy1992 ,

I'm sorry to hear that you were treated so dismissively at your neurology appointment, but I am glad that you got a referral to rheumatology. I hope that the appointment on Wednesday goes much better - please let us know how you get on.

We have a blog article about getting the most from medical appointments which has some helpful tips about preparing which you may find useful? You can read it at lupusuk.org.uk/getting-the-...

[Tiffy1992 in reply to Paul_Howard]

Hi Paul

Thanks very much for the reply and the link, I will give that a read! I need to be as ready as possible to make sure I get what I need for this appointment. I am also taking someone with me to this one, I have been alone for my other appointments and feel like it is easier for them to treat you negativelyif you are alone.

I will keep you updated!

Tiff

[Minnskimoo in reply to Tiffy1992]

Hi Tiffy.

Sorry to hear about your bad experience. All too commonplace it seems - anxiety, psychological condition label. I am in a similar situation and have begun to realise that getting diagnosis for symptoms can be a long, drawn out process.

A good idea to have someone accompany you, but isn't it a shame you have the need to to do that for support, and because of the fear of not being believed.

I will be interested to hear how your appointment goes Wednesday -it surely can't be any worse that the one you had!!

Sending good luck wishes your way.

Sue.x

[mamaholes]

Hi Tiff, I'm sorry that you're having such a hard time. I'm in a similar boat to yours, I will be seeing the rheumatologist for the first time on March 7th. However, unlike you, my neurologist almost killed me! I had been under his care for headaches for almost two years, however, in November of last year (2017) I began having excruciating headaches and tingling in my fingers and even my face in one episode. I told him that my headaches were different, nothing like a typical migraine. He had already upped my dosage on my migraine preventative, but then he wanted to add another med to it! Rather than investigating what was different, he just wanted to fob me off with more medication, that probably wouldn't help anyway. I said that I wanted another scan or some more testing done because it was clear that this wasn't the normal symptoms or that just another med would help. He did testing and when they came back, my liver enzymes were elevated to TEN TIMES the upper limit of normal. The other bloods were remarkable for anemia, low platelets, a minimal white count, and other abnormal counts. After they received my results, they called and instead of working with me, they said that they were returning me to my GP's care!!!

My white count continued to drop, and when they did a CT of my abdomen to check my liver they discovered that my spleen is enlarged to over half again what it was at the beginning of December. The meds he gave me had all of the sudden shut down my liver, and I had to cold turkey off of them to protect my liver. Turns out the headaches were just part of my symptoms, not even migraines at all. They just dropped me like a bad habit when their meds ended up harming me.

I went to oncology where they determined that my LDH is elevated, my cd4:cd8 ratio is inverted, and there was a consistent drop in my white count for several weeks. In that time, I got influenza a, laryngitis, bronchitis, and borderline pneumonia, but they treated me with steroids which helped the whole underlying issue as well as the acute symptoms. The doctor, based on my results and a consistent facial rash felt that it was definitely autoimmune, most likely SLE, and sent me to the rheumatologist, based on these and other symptoms. I am anxious for that appointment, as I'm unsure what the results will be, since I was ANA-negative. The oncologist said that it definitely didn't exclude Lupus, so I'm nervous to see what the rheumatologist says.

Like you, I'm afraid of being told that I'm just consistently getting a viral infection, which is what they've told me for two years now, but I have a lot of hope that it will go well. I hope yours does too, just write down all the symptoms you can think of that you've had over the past few years or months, and make sure they listen! Good luck, I will hope it goes well for you!