Thread: Full body scans
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Old 02-27-2013, 09:43 PM
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Aussie99 Aussie99 is offline
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Join Date: Aug 2006
Location: Australia
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Aussie99 Aussie99 is offline
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Join Date: Aug 2006
Location: Australia
Posts: 933
15 yr Member
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Quote:
Originally Posted by Liftyourhands7 View Post
Hi Aussie and Mrs D, thanks for reply, yes it's a full body CT scan, I know it's a lot of radiation, I guess I'm just desperate to find an answer to this SFSN. Mrs D I did have a head and Neck MRI 2 years ago when all of this started, it showed that I suffered migraines, which I do, but no MS or tumors or strokes of any kind.I think I may hold off on the CT scan, I'm just so frustrated with being in so much pain with all of this, I just want to literally jump out of my skin! So Aussie did you have Full Body SFN and how did yours present? Thank you for all your help. Blessings, Jan


Hi Lift,

Mine started after I had a virus (coincidentally). It started in my head with intense prickling (even in eyes),then spread downwards. Yes bodywide and very scary. Mostly all sensory.

Then it went away for almost 3 whole years.

I never had numbness though until it came back by 50% in March 2010 after an operation, and then increased to 100% intensity again by November 2010. My operation sent my immune system out of whack and my thyroid too.

Most days I feel like I am being clawed by a wild animal. I find that I am short tempered at home sometimes and I hate this because I love my family. There are a few things I have learned in my 8 years with this affliction and if it will benefit you in any way am happy to share.

I have been on dozens of forums lurking for many years reading thousands of posts about sensory neuropathy and alot of the posts are very similar. Basically the overlapping information that sticks out is that all the tests come back negative and after countless of specialists including bloodwork,scans,and so forth people are no better off then when they started.

Whatever this is it has been around for a very long time affecting millions of people. Doctors prescribe the same meds to these people. they take pain killers, lyrica, neurontin etc. This basically means that doctors are treating the symptoms regardless of the cause.

A Lot of people seem to have dealt with and managed it to the point where it becomes an annoyance in their body and having supportive people in ones life seems to make a big difference.

People (like myself) have had it for many many years (some even decades), and they are still alive and kicking. If you read my labs, my scans and look at me, I look the picture of health right now. But I too am in pain.

The worst aspect that seems to resonate with sensory PN is the pain for a lot of these people. Pain management is very important because pain breeds fear, anxiety, depression and anger.. all which are negative emotions and harmful to self esteem.

I am not saying that you should stop looking for a cause, but reading your posts I sense you feel discouraged and in pain. You are not alone in this and I want you to know that it can improve and the pain can subside. Pain management is very important for your quality of life.

Anytime you need a shoulder,
Aussie
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