It's been a while since I posted last. Alot has went on so I'll recap quickly:
- Positive Ana, Ena, C reactive protein, Ro and elevated platelets in Dec 16. Referral to Rheumatology. 33 weeks wait until appointment.
- Overactive thyroid discovered in June 17 when I got viral meningitis.
- Potential prolapsed disc in back. Referral to physio Sep 17. MRI denied.
So, I got refered to Endocrinology for the thyroid, I've had an ultrasound where they said the whole thyroid is affected. Then had uptake scan with radioactive Iodine. They've sent no results to my gp so I'm unmedicated. I called today and they can't find my results in the system. What a joke.
I went to Rheumatology, they took note of my symptoms and the consultant came and looked at me when I showed them photos of my butterfly rash and my medical diary. The result was that " While your blood tests are positive, they aren't positive enough so we'll redo the bloods and come back in 4 months. Take Amatryptalin in the meantime for the pain"/ " We'll refer you to dermatology incase it's rosacea on your face" / " You don't want a rheumatologocial disease, trust me".
I am completely crushed. The pain has been horrific and I'm having to go part time at work due to continual absence. I've been in hospital more times than I've had hot dinners recently and now I have another 4 months of agony to get through and no hope they'll help when I go back.
So I went to the Dermatologist, he had all my notes and did a very thorough examination. He told me I don't have rosacea but he suspects I have psoriatic arthritis due to the pain in my feet. However- He said this wouldn't account for my odd blood work and he suspects I most likely have Lupus too. He gave me creams and shampoo for my psoriasis and sent me home. I've got an appointment in November to start on Methotrexate.
I was in hospital two weeks ago with the agonising back pain, loss of bladder control and numbness in my buttock. I was promised an urgent MRI and admitted. The bladder control was new, but the terrible pain and numbness has been constant and unrelenting. I have paraesthesia in my legs and toes too. The consultant came and it was decided, without even so much as an examination that I must have a continually prolapsing disk. He said it will fix itself even though I've had this pain for 2 years and no pain relief has worked so far. He cancelled the MRI and I was sent home with the promised of physio (wait list of 16 weeks) and a weeks supply of tramadol. I call bullshit on this. It's disgusting as Prolapsed disks should heal within 3 months.
I've been put on Lyrica, Gabapentin, Dihyrocodeine, Tramadol and Amatryptalin. The only one that has worked to any degree is the Tramadol and that's all I've got for pain now. I've been told ive been refered to the pain management clinic. I've been waiting over 2 months and no word.
I already do physio exercises, massage and back rolling. Nothing takes this God awful pain away.
My memory is like a sieve too. I can't concentrate on anything and I'm constantly dizzy.
I feel like I keep hitting up against walls and I am so low. I honestly don't know what to make of it all.
Clearly something is very wrong but I just get pills thrown at me and sent home to wait months to be told to wait more.
When will this end? I have no life anymore and pain consumes every waking moment. The system let's me down constantly and I have very little hope of a proper diagnosis and the help i need.
Nurses and the Dermatologist are baffled as to the whole " Not positive enough" outlook Rheumy had.
Any thoughts? X