Day 107 of life with post #covid19 symptoms and here's a thread with details about what took place when I visited my neurologist and cardiologist yesterday and in particular their advice for managing my ongoing recovery #longcovid 1/n
Another night of short sleep, but I don't feel that bad, no brain fog etc this morning and despite my ongoing issues with lower body, I was ok to walk and grab a coffee from a local store this morning 2/n
To set the scene, I specifically chose private specialists who were relatively experienced, also do their own research, had experience with seeing people with post viral symptoms and felt comfortable taking on my case 3/n
Had 30 minute consult with my neurologist. My brain & legs MRIs are normal. He took me through lots of images from the MRIs showing me where he had expected to see damage/issues if covid-19 had led to a problem. Good to rule out problems that the virus might have triggered 4/n
So why am I getting brain fog, brain fatigue? How come I can walk for 3 miles sometimes but some parts of my lower body feel switched off for over 2 months? There is no pathological reason based upon my scans. He put it down to post covid syndrome and deconditioning 5/n
No further tests are warranted. What about my ongoing recovery? How to best manage that? He reminded me that for the first 2 months since symptoms began, I had effectively been in bed, with brain and body not being used like normal, so deconditioning is a big issue for me 6/n
From a neurological perspective, he didn't believe there was any harm in me using my brain, i.e. to watch movies, go online, do work etc even if I do still get symptoms like weird pains in my head. I need to use my brain to get it used to train it back to normal 7/n
From a physical perspective, he told me to be careful (as my GP and other specialists have advised) and that I've made huge progress in my recovery, and I should keep up the momentum, but I shouldn't try and resume "normal" physical activity "overnight" - slow and steady 8/n
If there are bad days where I can't get out of bed, then I shouldn't push myself and force myself to go for a walk in the garden for example. He can't prescribe me what to do, but advised being sensible, and listening to my body, I told him I have been "pacing" as GP's advice 9/n
How long before I'm back to normal? He reminded me it's a new virus, we don't have data. It could be another 100 days, it could be longer, nobody knows. However, based upon his past patients and his assessment of me, he's confident I will make a full recovery 10/n
I celebrated by having a slice of cake 🧁 in the park. So then I saw my cardiologist a few hours later, at a different hospital in London. Alas, due to computer issues he was unable to show me me the images from my cardiac MRI (but he will email me a copy of the report) 11/n
Plus I have CDs with all images from my MRIs. He was delighted to hear about my good news from the neurologist, and provided further good news, perfectly normal cardiac MRI, no signs of scarring or issues with the structure of my heart as a result of covid-19 12/n
From his perspective, in terms of my heart, there is nothing to stop me from undertaking vigorous physical activity at some point in the future, in terms of ability to pump blood etc, i.e. nothing to stop me from running 10k/working out in gym once I'm recovered 13/n
So what about my ongoing recovery? He told me this is very much based upon how I am feeling on a day to day basis. Just because all my MRIs are normal, doesn't mean I should start jogging every day, even if my body feels much better and my symptoms ease 14/n
Again, just like the neurologist said, this is a matter of time, and it's about a slow and steady pace, rather than trying to be overly ambitious and pushing myself harder than I should be, just because I'm desperate to be normal again 15/n
He was confident I will make a full recovery though. Both he and the neurologist knew that I've spent most of my career analysing data from medical records, so they both encouraged me to browse the MRI images on the provided CDs just for my own knowledge and understanding 16/n
I felt enormous relief after seeing both specialists and confirming that there is no damage to my brain, heart or legs as a result of this virus. Some might argue the chance of damage was low, but I wanted to find out for sure 17/n
I've analysed the data of tens of millions of patients during my career, and I've found things that didn't make sense, that didn't follow the expected clinical pathway for a particular disease. I didn't want to wait for an event to occur to find out my body had been impacted 18/n
What's the price of my peace of mind? Of seeing a rheumatologist, respiratory doctor, neurologist, cardiologist and having tests
£7,725 (no health insurance, self funded)
Yes, that is a lot of money 19/n
£7,725 (no health insurance, self funded)
Yes, that is a lot of money 19/n
I've had to sell a few things in order to help pay these bills, I would have even sold my car if I had to! Being examined by the specialists, getting their advice, having tests done, finding out the impact on my body of 3 months of symptoms was important to me 20/n
I have made remarkable progress in my recovery in the last month. I've been able to resume driving, having the mental & physical stamina to drive for up to 1 hour continuously. That's huge! There was a time when just walking a few steps would trigger a whirlwind of symptoms 21/n
I appreciate that some people might disagree with what all my doctors including my GP have advised me to do (which has helped me to make significant progress in my recovery), and that's cool, this is a public forum, and if people want to comment, that's up to them 22/n
However, I've not been posting on here to seek medical advice (it's dangerous to give/receive medical advice on social media, imho) - My desire has been to raise awareness of #longcovid and to hopefully get more people to understand all the possible risks of getting #covid19 23/n
I've got no reason to distrust my doctors including my GP who have all helped patients to make a complete recovery from viral infections over the years. Everyone has their own journey as a patient, and I feel comfortable that my journey is progressing in the right direction 24/n
I've said this before, I'm not stressed about whether my recovery takes a week, a month or a year. I'm going to be kind to myself, take things moment by moment, and this particular moment calls for a cup of tea ☕️ and expressing gratitude for everything that I have 🙏🏽/end
I forgot to add. I think my GP's suggestion about multi disciplinary post covid clinics is a good one, rather than going from hospital to hospital seeing different specialists, like I've done, which has made the process more fragmented
