I had an appt with my neurologist yesterday and we went through my day to day struggles in a very general sense.
My neurologist confirmed that my MRI in March shows no scarring and all inflammation from my brain has gone and so there is no reason I shouldn't make a full recovery (obviously I am so thankful & encouraged by that).
They have referred me to a psychology dept as she believes that they can assist with recovery. I am happy to follow guidance to get better but I am perplexed as my symptoms are very real & physical, I am not wallowing in having an illness, want to get better as quickly as possible. I don't think she is saying 'it's all in your head/imagination' but it is niggling me the more I think about it!
Has anyone gone down this route? What was your experience?
I know that talking things through in an open and honest way makes you feel better (I did this with a gentleman at the Encephaliitis society and it moved my recovery on). So there IS benefit but I just feel a little niggled.
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GreenBamboo
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It's great news to hear that your MRI shows no scarring or permanent damage!! A full recovery would be a dream come true for all of us on this site who have experienced encephalitis. May it be so for you!
At some points in time, I was sent to phychiatrists, phychologists, neurologists, physical therapists, (and to end the list of "ists" off,) some pharmacists, too. 😄
I also questioned why I was being sent to appointments that to me, were of no possible benefit. One in particular, the physical capacity tests, took two hour-long appointments to complete. At the time this was quite annoying since I felt that my time was being wasted and that the doctors should be looking in other directions. However, they found things wrong with me that were of great benefit in the long run. Results were shared with my neurologists and primary care physician.
The logo for the Encephalitis Society is a puzzle in the shape of a brain. Our illness is indeed a puzzle, with each our puzzles being unique. If one imagines a box full of puzzle pieces, the job of the doctors is to try to find the pieces that fit, and complete the puzzle. Some will fit and aid in your total recovery. But some, perhaps most, will not.
So for now, I would suggest just "playing along" and keeping the appointments set by your neurologist. If nothing is found, no harm is done. If something is found, then all the better.
I also push myself and want to get better as soon as possible. However, I have learned that I now have limits and when I push them, I will pay a price in the form of fatigue. It's good to work hard and do one's best to push the limits of our abilities, as long as we are not harming ourselves in the process! I had to learn to "cut some slack" with myself, and perhaps you might want to do the same.
This site has been educational for me in many ways, not only for medical information. I continue to learn more and more about terms and words used in the UK that are not common here in the U.S. For example, when you said that you were "niggled" I must admit that had no idea of what that meant!! Some google searches cleared up my confusion! Thanks for the humor, unintended as it may have been!! (Oops, make that humour, with the proper UK spelling!! 🇬🇧)
Looking forward to posts of your awesome progress,
Thanks OldGnome, you explain the puzzle pieces really well and change my perception of care going forward.
'playing along " makes me step away from the deep analytical thinking, that seems to be a feature since my event, and that can be really tiring in itself! Maybe the thought of psychology has already helped me!
'niggled'; I just had to look up the meaning to make sure I was using it properly!
Hi GB, There's a lot to deal with regarding Enc. The range of symptoms are many and can replicate other health conditions. Medicine is a complex field.I'm 71 and finding old age itself is no joyride, enc is the cherry on the icing! One useful outcome for me was a diagnosis of low thyroid levels which was revealed after a routine blood test. The symptoms of low thyroid can be depression and fatigue, something I've struggled with for decades. Once my thyroid levels are normal I can start to isolate the effects of Enc more clearly perhaps.
Lumbar punctures (spinal tap in the US?) can reveal the presence of bacterial and viral infections in the spinal/cerebral fluid and suggest steroid and/or antibiotic therapy.
As to when one is 'cured' - well that's another story especially when dealing with health insurers. I'm in the UK so the NHS dealt with all my costs, 24 hour supervision in the acute ward, induced coma, drips and meals all included. I even got a souvenir pair of pyjamas!
Private care in the US would have been about $170,000 plus prescription costs which are also free here. I'm on about 20 tablets a day.
It's worth noting that I was treated in a teaching hospital so next year's medics got a good grounding in the mysteries and techniques of Enc therapy, seizures and chatting to old folks.
Thankfully I am retired, I don't think I could cope with Enc and working - cleaning house, cooking, gardening and exercise is plenty to be going on with.
One can easily stray into the realms of 'alternative' therapies which can be expensive and produce no improvements. On the other hand, relaxation, massage, counseling, exercise and dietary improvements (salads) did work for me.
Some research has shown that Psilocybin mushrooms and other psychedelics can assist in the repairing of nerve endings. Google come up with some interesting reports ....
The brain seems to have a remarkable capacity for healing and repair, as I said to one nurse "It seems to have a mind of its own"
Best Wishes for a great recovery and a useful life ahead. G2
You've really made me chuckle (not sure that was intentional!).
With all the costs involved if you are in the US you were lucky to be in the UK AND the medics benefiting from the experiences you have provided! Joking aside we are very, very lucky in the UK not to have to worry about healthcare costs at a time where we are most in need.
The thing I am jealous of (& the green eye monster is an ugly thing) you got souvenir pjams and I just got socks! Tee hee!
I hope, as you continue to explore all the options open, that you find your pieces to complete your pesky Enc puzzle!
My MRI scan is completely clear too which is great and delighted to hear yours is too! However, it's important to mention despite that I still have a brain injury and suffer from long-term physical issues such as headaches and memory loss. So it's important to note that and give yourself reassurance that it is a side effect of encephalitis!
It's important to have good communication with your doctor which is hard to do sometimes as it takes two people for that to work. I feel as though your neurologist should have explained her reasoning for the psychology referral instead of just doing it.
As with any illness, it's an upsetting and sometimes a traumatic event in our lives. Talking with someone about what you've experienced can be an incredible tool for recovery as they will help you mentally and they will also have tips for your physical health such as relaxation techniques.
I know it can be daunting but it might be interesting to give it a go and see how you get on! I went to counselling after my encephalitis and found it incredibly beneficial and I learned lots of ways to manage my fatigue and headaches while looking after my mental health.
Would you feel comfortable mentioning to your neurologist your feelings regarding the psychology referral and open up that line of communication? It might help with future conversations and appointments!
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