Full body scans
 

Can anyone here tell me if you think a full body scan could be helpful in maybe finding out why I have full body neuropathy? Are there questions I should ask the Doctor who is doing the scan? As some of you here know I have had all blood tests for almost everything and I am diagnosed as idiopathic sensory neuropathy. Glenn I would be particularly Interested in what you have to say, as you had some of the same symptoms I have. Thanks, Jan

Hi Lift
 

What type of scan are you thinking? If its a full body CT scan that would be alot of radiation. Here in Oz the nuclear imaging places will not take you even if you wanted o pay for a scan privately. You need a doctors referral and I think it would be difficult to get a GP to agree to a full body CT in the absence of any other positive signs. If its an MRI that might be different. ( no radiation) but very expensive).

You referred to Glen, I also have a very similar presenting neuropathy to yours and Glens. It started 8 years ago and actually went away for almost 3 full years! Then in Feb and March of 2010 I had surgery and a car accident and it came back at about 50%. Still quite tolerable. Later that year I had the flu twice just one month apart and it really took off. Mine has been chalked down to most likely hormonal or autoimmune.

Because PN's tend to be "chemical", I don't think a scan with the radiation risk is going to show much.

Those scans are for illuminating abnormal masses and cancers.
Therefore "gross" changes in tissues. The biochemical disorders tend to not show up on imaging.

An MRI of the head may show lesions there however. Since your pain is "everywhere" you might investigate MRI of the head and neck. Abnormal blood vessels (AVMs), in the brain, lesions, or masses, may show up...central pain states may come from ministrokes for example.

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:)

Thanks Aussie, I am seeing my new Neurologist the end of March and I am going to ask him to refer me to a pain management clinic. I too am very cranky with my family sometimes, I just hate it when I get that way, but they really don't have any idea how I am suffering with this, I too look the picture of health, some days are better then other days but this condition is chronic and I am never free from the affects of it. Thank you for giving me your shoulder to cry on I appreciate that so much. My neuropathy started in my feet and within just a few months progressed upwards and involved my whole body. I have taken Gabapentin for over a year and although it does help the pain it gives me headaches everyday and makes me feel dopey, but I have to use it or I am on tremendous pain. I pray everyday it will get better and I just need to trust the Lord that He will get me through this. Anyway thank you so much for being a support to me. Blessings, Jan

Jan,

I just wanted to let you know that I also went numb all over like you. It was very frightening. It is resolving now after 13 months and now that numbness has turned into positive symptoms like pain and hypersensitivity and the clawing feeling i described earlier. Since i had neuropathy years ago and fully recovered, and now i have it again, I beleive the pain will subside and i will get better in due coarse. Healing can be painful, I remember this from before. Alot of these autoimmune neuropathies are self limiting, the immune system eventually stops attacking and recovery takes place. You have a lot of good specialists looking after you and you are in good hands with them. Keep praying, and have faifth that you will recover. It just takes time. Blessings back to you.

Aussie