Wednesday, 16 May 2012

Thank you

I just wanted to do a quick post before I head back to bed to say Thank You, to those of you who have left comments or who have contacted me to say that they enjoyed my last blog post. It means the world to me that you enjoyed it and understood the place that I was coming from.

I thought I would also take this opportunity to update you on my recent hospital visit which took place last week. The appointment went very well I saw my consultants registrar although my consultant did pop his head around the door and say hello.

The results of the appointment are that I now have the registrars e-mail address and I am to forward to her any info / Medical papers / videos that I come across on the various forums that I lurk on. I think the registrar may come to regret this as my last email contained close to 14 medical journal articles! Due to a lot of the forums I belong to being mainly American a lot of the research comes via the Vandy, Mayo and Dr Grubb. Some stuff I am sure that she may have seen others I dont know. Hopefully they will be of use to her and my consultant as they are hoping to start some research. I know its along genetic lines as yet again I was asked in the future would it be ok if they took my blood to have a look at it. I asked them would they have the vascular access team on hand as my veins are notorious for refusing to give up the red stuff. My consultant and registrar both said "oh no your one of those!" meaning its not uncommon for my feet to be used as the puncture site!

I have to continue with the midodrine for the time being to see if we can get to a dose that I can tolerate and doesn't irritate my bladder. The next appointment is in August and if the midodrine is still not playing ball with my bladder its time to move onto the next medication. I am happy to continue but I already know it doesn't matter what dose I am on my bladder really doesn't like the stuff, it reacts on 2.5mg, 5mg, 7.5mg and 10mg - I don't think there is an optimal dose. But as they said I have a good head on my shoulders and they know I will play the game until August.... unless I have any nasty urinary tract infections and then I will say no.

I asked about taking a small dose of beta blocker at night to see if that helps me sleep better. I had come across some research that showed POTS patients also have symptoms whilst we sleep and due to that we don't get any useful, restful sleep. We are constantly running on an empty battery, if you add the pain of EDS into the mix its no wonder we feel like extras on the TV series The Walking Dead! I can sleep 12 hours and wake up feeling like I never slept at all!

They are thinking about it and then getting back to me. So fingers crossed.

I also came across this brilliant blog http://hypermobilityhope.blogspot.co.uk/2009/08/hypermobility-in-lower-body-pictures.html it shows you some of the bendy crazy stuff that we EDSers can do. It also explains why we are so clumsy all the time. Our brains basically dont have a very good idea about the space our body takes up, hence the permanent bruises on my knees from walking into my bed, the very same bed that has been in that position since 2004! Why all the door frames in this house gang up on me. I have to consciously think about where things are in relation to me all the time. The onetime I don't do it I walk into things! So thank you to the author of this blog.

Thanks for reading!

6 comments:

Em said...

thanks for the link rachel. always good to have more information on this condition.

so refreshing to hear of a dr that wants to know more about a rare condition, is he a cardiolgist?

take care. x

The Myasthenia Kid said...

Hi Em,

No bothe the consultant and registrar are in geriatric medicine and general medicine lol! Hes the only person in the hospital who does the tilt table tests. Through me hes had more and more patients referred to him with POTS and EDS and hes looking at having his own POTS clinic.

Cheers hun,
Rach xx

Anonymous said...

http://www.cnn.com/2012/05/18/health/rare-disorder-head-rushes-dbhd/index.html?hpt=hp_bn12

Rach, Please read this article! Maybe this drug might help you.

Annie

The Myasthenia Kid said...

Annie,

this is so weird I actually contacted my Consultant about the same exact condition last week!

Great minds think a like, thank you so much for taking the time to give me the link. I will send it onto my Consultant!

Much love

Rach xx

Anonymous said...

Rach, You know I'd do just about anything for you. I've been in a real whirlwind lately, so I'm sorry I've been AWOL.

Take care of yourself. I hope you survive the Olympic BS this summer. ;)

Annie

The Myasthenia Kid said...

Hi Annie,

Dont apologise its just great to hear from you.

To be honest I am not looking forward to the Olympics, nor the European Football tournament. Its going to be wall to wall sport for months on end. I need to find a place I can hide away!

Take care of yourself hun

Rach xx