Getting diagnosed for Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome (POTS) and conditions like fibromyalgia can be such a challenge.
After sharing information on the doctors who treat my endometriosis and adenomyosis, I continue this series with more than on the doctors who treat my EDS, POTS and fibromyalgia.
If you would like to watch a video version of this blog post then you can right here on my YouTube channel, if not, then just scroll through to read on:
Like I said, getting diagnosed with EDS is challenging – I faced those challenges like many others have done. For example, as a child what my GP termed as growing pains was actually a sign of hypermobile-EDS and it took for me to end up in a wheelchair at the age of 31 for there to be further investigations leading to my diagnosis of hypermobile-Ehlers-Danlos syndrome, POTS and fibromyalgia.
If you would like to know more about how I was diagnosed and what my EDS story is then you can read it right here:
Now on to the doctors.
I live in Mumbai and met many doctors here who had no clue how to help me. We have to remember that EDS is a rare disease because it is rarely diagnosed.
Doctors are not trained to look for the rare. They’re trained to look for the obvious, go through a process of elimination and then hopefully help you discover a rarely-diagnosed condition such as Ehlers-Danlos syndrome which till date has 13 sub-types.
Mumbai, India
Doctor Jyotsna Oak
Dr Oak is a rheumatologist and an internal medicine doctor. She is patient, understanding and a very good listener.
She was the first doctor that diagnosed me with hypermobile-EDS, postural orthostatic tachycardia syndrome (POTS) and fibromyalgia. Her diagnosis came after she made extensive efforts in understanding my symptoms including the pain, the type of pain, how my skin behaved, how my blood pressure was in various positions and going through that process of elimination.
She is now my primary care doctor and helps me through almost all the comorbidities I face because of EDS, such as my recent encounter with a CSF Leak.
To know more about my head pain, CSF leak and brain sagging issues, you can right here:
To get in touch with Dr Oak, you can consult with her online or see her in person at Kokilaben Dhirubhai Ambani hospital in Mumbai.
Here’s the link:
https://www.kokilabenhospital.com/professionals/jyotsnaoak.html
Physiotherapist Vaibhav Daga
Vaibhav Daga not only helped me with my pelvic floor therapy for my endometriosis, but he’s been instrumental in helping me improve my quality of life.
My legs hurt and then so will my arm, my neck, my jaw, my fingers and then my ribs will subluxate – and he helps to keep me together through aqua therapy, taping, strength training and the manual therapy he does.
He isn’t specifically an EDS specialist but he’s really looked to understand my challenges and helped me through so I am eternally grateful for his effort. He didn’t give up on me and neither did he look to ‘experiment’ on me either. Instead he took his time to figure out a plan for me and kept a tab on my progress.
If you would like to know more about the taping I get done, then you can here:
Also, if you wish to know how I manage my Ehlers-Danlos syndrome then I’ve written about that here too:
And to get in touch with Vaibhav, you can do that here (he’s with Kokilaben Dhirubhai Amabani hospital too, just like Dr Oak):
https://www.kokilabenhospital.com/professionals/vaibhavdaga.html
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Nutritionist Pooja Udeshi
Having an anti-inflammatory diet is an essential when dealing with chronic pain. Ehlers-Danlos requires you to look at your diet no matter which sub-type you have.
Although Pooja isn’t an EDS specialist but again, she has also looked to understand my condition and has helped me create a plan that works to improve my health.
If you would like to know more about my EDS-friendly diet then you can here:
To get in touch with Pooja, who also works at Kokilaben Dhirubhai Ambani hospital, here’s the link:
https://www.kokilabenhospital.com/professionals/poojaudeshi.html
London, England
Doctor Gayatri Mittal
Dr Mittal is a rheumatologist who specialises in hypermobility spectrum disorders and hypermobile-Ehlers-Danlos syndrome at the Hypermobility Unit in London.
After my initial diagnosis with Dr Oak in 2017, I was travelling to London (to watch some live cricket) and so I booked an appointment with Dr Mittal.
During my appointment, Dr Mittal was very thorough. She went over my history, did some tests including the Beighton test and looked at Dr Oak’s notes.
It was a pleasant surprise when Dr Mittal told me she knows Dr Oak – the world really is a small place but this also eased me. It felt like Dr Mittal could connect with Dr Oak’s notes and agreed with her diagnosis of hypermobile-EDS, POTS and fibromyalgia.
This appointment sealed the deal for me. It was on this day that I finally stopped running around for a diagnosis and instead began understanding Ehlers-Danlos syndrome better.
If I had the time, I would have liked to have seen their specialist physiotherapist and occupational therapist there but I was travelling so I hope at some point in the future, if London calls again, I would meet the rest of their team.
If you would like to know more about Hypermobility Unit in London which has multiple specialist doctors under them, then you can here:
https://www.thelondonhypermobilityunit.co.uk/
Other Important Resources:
Doctor Pradeep Chopra
I have never met or consulted with Dr Chopra (and neither am I related to him!) but I have seen his webinars. He is a pain management specialist and speaks extensively about managing Ehlers-Danlos syndrome.
He is a resource worth listening to and understanding. I’ll link some of his webinars here but I’ll also leave you to researching his work a bit more:
1. A webinar from April 2017 – https://youtu.be/A6T9IzkcsWo
2. A webinar from December 2019 part 1 – https://youtu.be/j6q7bVm_oaw
3. A webinar from December 2019 part 2 – https://youtu.be/x3qT4UwzVs8
Jeannie de Bon
Jeannie is a movement therapist specialising in hypermobility, Ehlers-Danlos syndrome and chronic pain. Again, I’ve never met her or consulted with her, but I have read her book (‘Hypermobility Without Tears’) and look to implement all that she teaches.
I relate to her because she has Ehlers-Danlos syndrome and MCAS (mast cell activation syndrome) like me and it gives me hope that if she can help her body then so can I.
I would recommend checking out her online courses:
https://jeanniedibon.com/
That’s it for my list of doctors and specialists who help treat my Ehlers-Danlos syndrome and postural orthostatic tachycardia syndrome (POTS) and fibromyalgia. I hope this helps someone out there.
As usual if you have any questions then please feel free to drop them in the comments section below.
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