never ending journeeeyy

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Regular Member


Date Joined Jul 2010
Total Posts : 200
   Posted 7/28/2010 12:31 AM (GMT -7)   
Hey Everyone,
Hope you are all coping with everything and having a good week, hopefully low pain!

Just thought i'd check in and let you know whats been happening with me!

I went to the doctor yesterday, just a normal visit still trying to investigate my abdominal pain and heart problems and work out whats going on! He thinks we are getting closer to a diagnosis, he's going to do an MRI asap to see if i have any growths inside my abdomen area and look for any nerve damage that could be causing the pain, if its nerve damage they will do a nerve block while i am under the MRI but if its a growth depending what it is we will deal with it. He isn't sure what to do about the increasing supra ventricular tachycardia attacks, but is going to do more monitoring to decide, but my mum and i have both decided the biggest concern is the amount of pain i am constantly in, i wake up every night for a few hours unable to sleep from the pain and i am getting so tired from it, because i get very small amount of sleep then have 7 hours of school and 2 hours of sport after school and heaps of study when i get home! The medication i am on is affecting my memory and brain alot and sometimes i get halfway through a conversation and just completely forget what it was about and its really starting to get scary and annoying, so hopefully the doctor will be able to help fix this as much as he can soon and get me off the medication! If the MRI shows nothing, he doesn't want to do many more tests because of the radiation so, we will have to figure another way to deal with this but he wants to try his hardest to find this and said i am one of his priority patients and he has never wanted to work something else out so much because he can see how much pain i am in and i keep getting paler, he said i am the bravest and most resilient teenager he has met and doesn't want to give up on this but doesn't want to be too invasive and damage my body, so i told him i am prepared to try anything that may have the slightest chance of helping me, even if thats just getting help to train myself not to feel pain! I am really hoping the MRI shows something so i can get a stop to this pain but it may not, we are just gonna take this day by day and hope for a cure but know it may never come!

Just hoping i can get some more sleep as i am soooo sooo tired just unable to sleep and i wake up the whole house because some nights i start screamingi in my sleep and wake myself and everyone else up! Fingers crossed something will work out :)

Hope you are all going well.

xxxxxx

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 7/28/2010 7:35 AM (GMT -7)   
Oh Buttercup,
I am so sorry that you are feeling so bad hun!! You are in my thoughts and prayers! I hope the doctor finds some answers for you really soon!! Take care and keep us posted!

Hugs,
Beckey

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 7/28/2010 8:24 AM (GMT -7)   
Have you had what's called an echocardiogram done for the heart problems, it's
not very hard to do but it's a bit uncomfortable..my daughter has a heart condition.
good luck with the MRI and lots and lots of well wishes...
(((((((((((((((((((((((((((Buttercup)))))))))))))))))))))))))))))))))))
healing hugz
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* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
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left forum.
Regular Member


Date Joined Jul 2010
Total Posts : 200
   Posted 7/28/2010 8:48 AM (GMT -7)   
thanks beckey :) will do, hope you are doing okay.

Chartreux, i have had an ecg and it showed up normal, my heart rate is normal most of the time but about ever 2 or three days i have an attack, they diagnosed me with supra ventricular tachycardia when i was 8, but now they are becoming more frequent they aren't sure what going on but think it may be related to the pain i have. they just haven't yet been monitoring me when i have had an attack but hopefully will soon :) thanks heaps.

xx

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/29/2010 5:44 PM (GMT -7)   
Hi Buttercup,

Unfortunately, I know what it's like to be dealing with pain at such a young age. I'm 22 & have had CP since I was 18 (although my string of injuries started at 15 & hence I have had pain or some kind or another since then). I just graduated college & plan on going back to school in another year. I know it's tough to deal with school while you're in pain, but I can also tell that you're a fighter. Hang in there! Hopefully the MRI will provide you with some answers & so hope for new treatments!

hugs,
Skeye

left forum.
Regular Member


Date Joined Jul 2010
Total Posts : 200
   Posted 7/30/2010 8:36 AM (GMT -7)   
hey skeye :)
aw, im sorry you have to deal with that, do they know what it is thats causing yours?
if you wanna talk about it id love to chat :) can you send like private messages over here?
xx

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/31/2010 7:44 PM (GMT -7)   
Buttercup,

Nope, I don't have a diagnosis. I had a pretty horrific trauma to my eye & nearly lost my eye (believe it or not, all due to a freak finger poke to my eye) about 4 yrs ago & have been in constant pain ever since. I also have a lot of rare neurological problems with the injured eye that have developed in the time since the injury & seem to indicate that my brainstem is somehow involved (although all tests always come back negative). I'm a real mystery (one of those once in a lifetime/to-be written up in a medical journal & presented at conferences cases, lucky me).

Right now there's not much we can do. My vision & function of the bad eye is progressively worsening. Only recently have I found some decent pain control. Over the course of the last 4 years, I've been on just about every medication out there with no luck. Nor have any nerve blocks or other procedures given me any relief (with the exception of one nerve block, which is so dangerous that it is used as diagnostic only). However, earlier this month, in a last-ditch effort, I underwent a successful trial & permanent implantation of a peripheral neurostimulator (same device as an SCS, but my electrodes are on the supraorbital & infraorbital nerves in my face, not my back) & I have been getting up to 50% relief from the stimulator. It's not perfect, but I'll take whatever I can get! I honestly couldn't be happier with the effects of the stim so far. Not only is my pain improved, but my eye alignment has improved somewhat as a result, and my depression is a little improved.

I don't think that there is a private message feature on HW, however, you can always reach my via email. My email is listed in my profile, just click on my username & it should pop up. I'd be happy to chat anytime & help you out in whatever way I can!

hugs,
Skeye
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