Hey all - just want to say hello whilst I’m on my travels visiting various friends dotted about the country etc. Thinking of you all, especially those struggling atm - Reemz and others. I’ve received a letter and joy of joys I’m NOT diagnosed with functional but am suffering ‘neurological symptoms which are currently medically unexplained’ - so no diagnosis and no rejection. On the down side I’m very worried about daughter no2 who also experiences the sensation of water running down the back of her leg and is now struggling to walk and has a very weak, heavy right arm she can’t explain. Externally I’m explaining it off to a virus or something, internally I’ve a gut reaction she’s following wahtever is wrong with me. On another plus side - it’s truly fab to see my friends I haven’t seen for a long time. Love to all.
That’s awesome news that they decided you’re not functional. We all knew you weren’t and in your gut I’m sure you knew too but at least you’ve proved it and can hopefully now move on to get some answers as to whats causing your symptoms.
I’m sorry to hear about your daughter - I don’t have children so I can only imagine how hard it must be for you. I hope your daughters symptoms get better and pray you’re right and that it is just a virus and it all gets better.
It’s lovely to hear your having fun and seeing old friends. Its good to take time out and take our minds off all this stuff and recharge - It really can be draining otherwise.
Enjoy the rest of your travels. I’m off to Cyprus early sunday so you won’t hear from me for a little while depending on what wifi access I have abroad.
Not so glad to hear about your daughter Could she be copying you (even unknowingly)? Children sometimes do this - to join in; be more like and closer to a parent they love.
If there is no way that it is anything like this, then you must tell your neuro when you get back - it could be very important (and get her seen earlier for investigations).
Hi - just quickly dipping in - have a fabby fabby time in Cyprus Reemz, I’m sure you will…be sure to hire a motorboat and let your hair fly in the wind!!
Karen - my daughter is 20 next week so not a child anymore and had presumed the warm water feeling was normal until I mentioned it as one of my strange things. She is heavily underplaying her symptoms and says she’s fine, I mustn’t worry and she’ll only worry when she starts jerking like I do! I am concerned as I think her achy arm is worse than mine.
Have yet to read all the posts to catch up but surely will do.
Could she be copying you (even unknowingly)? Children sometimes do this - to join in; be more like and closer to a parent they love.