Monday, 24 April 2017

New Beginnings - Hello To My New Diagnosis'

Apologies for my lack of posts the past week, as you may have seen on my instagram stories, I have had another spanner in the works in respect of my chronic illnesses and it has been incredibly tough to get my head around. It's the way I have always been- I am an over-thinker so, since suffering with a chronic illness, naturally there are a lot more things for me to dwell over too. I worry if I will get answers, the right treatment, if my condition once stabilised will stay that way, will I pass it onto my children the list is endless...

To try to elevate this worry slightly I spend time researching, whether that be for a new doctor, treatment, surgeon, alternative therapies, a different country for medical advice.... I stumbled upon "Bowen Therapy" (more on that to come later), I researched therapists within central London, and stumbled upon a lady based near Euston square. After a lengthy telephone discussion summarising my past ten months, including my symptoms, known conditions to date, and my medical history prior to June 2016. I was greeted with a rather peculiar reaction on the other end of the phone, it was almost as if I could hear her smiling as she explained she has written several books and works with many professors and that she may be able to assist with not only my symptoms, but gaining further diagnosis's.

And that's exactly what she did.. The moment I walked through the door she was sure I had hyper mobility/autonomic nervous system just from several rather basic tests with her. As such, she insisted I met with a friend of hers, who is a neuro-gastroentrologist and so on Saturday 8th April 2016, that is exactly what I did.

I attended the consultation accompanied by my partner, and after I had a chat to the doctor and finally realising who is at fault of the tube delays.. (if you haven't guessed, that would be me- regularly collapsing unconscious on the underground and dragged away by paramedics!) We discussed my symptoms, the medical findings to date, and confirmed diagnoses so far.




No stone was left unturned, every point I made, the professor asked further questions, wanted me to explain in thorough detail, and all of my points were heard outright. It was a rare occasion upon meeting a doctor, that I felt I was taken seriously and was given the time to be heard in detail. In the past ten months, I have found many doctors do not have the time, and I have only encountered a handful of doctors that are indeed interested to gain a full understanding.

He carried out an array of blood tests, reviewed previous scans, MRIs, blood work, hospital admissions etc. Then proceeded to ask me to perform several tests, asked about my medical history prior to my chronic illness attack. He then sat down and informed my partner and I have Ehlers-Danlos syndrome, Postural Orthostatic Tachycardia Syndrome (POTS) and likely am suffering with chronic migraines.

He has requested urgent referrals for a pots specialist, a rheumatologist, migrane specalist, and a dietican.

Supposedly, Ehlers-Danlos Syndrome is my "umbrella" chronic condition, and therefore my previously diagnosed conditions such as colonic inertia (paralysed colon), gastroparesis (paralysed stomach), superior scotoma (blind spot within my left eye), inflammation within my ileum, chronic fatigue, POTS and chronic migraines all form under Ehlers- Danlos Syndrome.

Additionally, Ehlers Danlos Syndrome can also include symptoms such as muscle weakness, stretchy skin, incredibly flexible joints, fragile skin, extreme tiredness (chronic fatigue), smooth velvety skin, unstable joints, problems with internal organs, digestive problems and dizziness.

I have to admit after leaving the hospital three hours later, we were speechless. My partner, not usually a particularly emotional person, left the room teary eyed. We could not believe how after so long, and countless doctors, insisting that all my illness were completely unrelated. 

So it's official, I now can add Ehlers-Danlos Syndrome, POTS and chronic migraines to my list of chronic conditions. I think this calls for a celebration!?

"The Hopeful Chronic"


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