I’m often asked about various tests I’ve had done over the years, so I thought it would be a good idea to list them all in one post. It’s been 21 years since I first became really sick and in the early days I didn’t keep records – after all, I was going to be better in a year or two (!) – so this is by no means an exhaustive list of all the tests I’ve ever had done, but at least you’ll get the gist. I’ve stated the year each test was carried out and imagine if some of the tests were repeated today the outcome might be very different!
Mast Cell Disease (all tests carried out in 2013)
- Tryptase: 4 (normal range 0-20).
- Methyl Histamine/Creatinine ratio: 140 (normal range 34-177). However, at the time I’d been on a low histamine diet for 8 months and was also taking daily H2 antihistamines. Without these my histamine would have been sky high, which is why Dr S still thought it “probable” I had MCAD.
- Histamine Releasing Urticaria: negative. Strange as my butt was covered in hives when I had the test done!
- DAO: 7.2 (anything below 10 indicates Histamine Intolerance).
- Total IgE: 4 (normal levels 0-75). This measures allergic responses in the body, rather than a specific allergic reaction.
- Skin prick allergy testing: positive for Birch pollen and mildly positive for dog.
Ehlers-Danlos (all tests carried out in 2011)
- Beighton Score: 8/9.
- MRI scan of lower spine: mild early osteoarthritis. Mild scoliosis. Previous Laminectomy surgery for congenital spinal stenosis (I was born with narrow spinal vertebrae which we now know is EDS related).
- DEXA bone density scan: normal.
- Heart scan for Mitral Valve Prolapse: negative. However I do have a mild heart murmur.
- Bowel transit study using Sitz markers 2009: normal (which means I didn’t have Gastroparesis then, not so sure about now!).
- Faecal calprotein 2009: 10 ug/g (this stool test measures inflammation in the intestines, anything less than 60 ug/g is normal. Again, it would be interesting to see what this test showed now).
- MRI scan of belly 2013: normal.
- Endoscopy 2013: positve for over a dozen benign polyps. Negative for H-pylori, Ulcers & Coeliac Disease.
- Physical exam by Rheumatologist in 2015 showed only 10% movement in my right hip and 30% movement in my left hip.
- EEG 1994: normal (this measures brain wave patterns).
- ECG First one 1994, last one 2008: normal (this measures heart rate patterns).
- Every blood test known to man: all normal, always!
- Hormone levels First checked 1994, last checked 2014: normal.
- Mycoplasma 2001: negative.
- Chlamydia pneumonae 2001: negative.
- Nerve conduction test 2014: normal (which rules out Peripheral Neuropathy).
- Lyme Disease test 2013: normal (we have a specialist Lyme testing Lab where I live as Lyme is endemic in the Lake District).
- Sleep study 2013: showed very poor sleep, but I don’t have the details. No apnea.
- Standing POTS test 2014: normal (!).
- 24 hour heart and blood pressure: normal (???!!!)
- Cholesterol 2013: LDL 4.6., HDL 1.5., Total cholesterol 3.5 (anything below 5 is normal).
- CT scan of sinuses 2006: inflamed but nothing abnormal found.
- MRI scan of neck and head 1996: normal.
- Chest x-rays, several: all normal.
- Ovarian scan 2005: normal apart from a 2cm cyst, which was thought to be cyclical
- Pelvic MRI scan in 2016: showed recto-vaginal endometriosis & adenomyosis. Also confirmed exterior (penunculated) uterine fibroids and polysistic ovaries.
I’m probably one of the sickest ‘normal’ people you’re ever going to meet, which has been half the battle in trying to get my illnesses diagnosed and treated. I suppose you can’t blame Doctors for thinking I’m a hypochondriac or some kind of nut case when all their tests point towards nothing being wrong. Of course, they weren’t testing for the right things and when I was tested for the right things they showed up like neon lights – the validation was life altering.
There are several tests I’d still like to have done but probably never will. I’d like some genetic testing. I’d like a skin exam by a Dermatologist clued up on Mastocytosis. I’d like an upright MRI scan of my neck and spine. I’d like a stomach biopsy for mast cells. And I’d like further blood and urine mast cell tests done, particularly at a time like now when I’m so reactive. However, I can’t afford the mast cell tests and they’re not available on the NHS. My GP is unlikely to refer me for gene, skin tests or another MRI scan as she won’t be able to see the benefit, but the way things are going with my GERD I might just get another endoscopy when I can ask them to stain for stomach mast cells and test for Eosinophilic Esophagitis.