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Post Info TOPIC: Been a couple of days....
lizabear


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RE: Been a couple of days....
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have you been tested for lupus?



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LB
Dzdayscomin


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Ahhhh....Tig I had not thought of Lymes disease. ..but that is a very real possibility....Robin it sounds that you had spent a lot of time traveling and being in the outdoors from your previous posts, unless I was reading into things. It certainly would be worth looking into.



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
Tig


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When you started describing some of your symptoms, my first thought went to viral or bacterial encephalitis. But they would've spotted that following the lumbar puncture. Have you received those results back for both tests? The headaches, shaking and eye pain are indicative of a nuerologic impairment IMO, but thats just my mind wandering in search of ideas. I'm also curious if you've been tested for Lyme disease? http://www.emedicinehealth.com/script/main/art.asp?articlekey=10733

Im sorry you're having to go through what I call "shotgun" diagnostics! Something will present itself through in depth testing, but that can be expensive. We'll just have to keep the thinking caps on and powered up!

Tig



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Trainhopper


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yes they tested for that as well



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34yr male Dx 1998 G.T.2b V.L. 2.5 million no current Tx 
Milliganus


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Hello Robin,

Wow...sounds like you have some challenges.  I wish I could offer more than my support and prayers for you.  Sounds like the tests they did ruled out some of the more obvious things.  You said they did a spinal tap.  Did they happen to check for spinal meningitis?  My son had it in China and they didn't even think to check for it.  Some (not all) of your symptoms sound similar.

Its good you are taking care of yourself and beginning the process of giving up the harmful substances.  Its tough at first, but your body will thank you for it.

 

Take care.



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Marcy

Long-term HCV, GT1a, IL28B C/T, T/G;  VL 2 mil.  Merck C-Edge Clinical trial  EOT 10/01/14. +24= UND
Trainhopper


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LOL I should have told her that! Well thats the scale she used and she was from Nottingham. She used kg too but not nearly as much. lol She used it so much I had to google the transfer just to keep up with her



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34yr male Dx 1998 G.T.2b V.L. 2.5 million no current Tx 
Trainhopper


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no meds, well maybe an Neproxin ( works though kidneys) if my headaches are bad. And yeah duane I am way proud already! My sister is flabbergasted that I am stopping the herbs. Like I was saying the doc took me off Lactulose (been a chore squeezing one out since) that was 4 days ago that I stopped 

symptoms have been since bout may and are at varying degrees. Bad one day... almost not there the next. Well the headache always is



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34yr male Dx 1998 G.T.2b V.L. 2.5 million no current Tx 
Dzdayscomin


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Hmmm i thought they used Kg....never heard of that......sounds more like a Flintstones scale!......lol



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
Trainhopper


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thats what they use in weight mes. in England my last girlfriend was British 



-- Edited by Trainhopper on Monday 29th of September 2014 04:35:30 PM

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34yr male Dx 1998 G.T.2b V.L. 2.5 million no current Tx 
Dzdayscomin


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Trainhopper wrote:

I forgot to mention I have lost 25 lbs (1.7? stone) in the last two months

 I don't  understand the thing in the (  )  ?



__________________

53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
Dzdayscomin


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Trainhopper wrote:

Hey good people,

It's been a few days since I was last on. Things have changed a little as far as pinning down what is giving me H.E. like symptoms. I had a Lumbar Puncture (spinal tap) E.E.G., and C.T. scan 2 weeks ago and just got the results this morning. So its a reiteration of whats been suspected. The results are as follows: M.S. neg Parkinson Neg Herpatic brain swelling. No s.t.d.'s in general (YAY!!!!!) Basically they still (with the help of a nuro) cannot figure out what is causing my symptoms. I was actually irritated when the nurse joked with me saying this was like an episode of "House". Other then that I have been keeping my sodium lvl (with tons of effort) bellow 1000mg, marijuana consumption is almost nil ( two hits in 4 days) cigarette consumption is down 2 more cigs a day. ( patches coming on payday) So basically I'm doing Well, Oh my pcp took me off lactulose. and drew more labs.

This website was a God send for me. It has been a wealth of knowledge, and great fellowship. So I will ask for opinions on my symptoms.

 

Constant headaches debilitating, light sensitivity, feels like my eyes are going to explode. 

I feel drunk sometimes. (havent even smelled alcohol in months) equalibrium (spelling?) is messed up bad in the mornings, I almost fall over if I rise to quickly.

Fine motor control is not quite what it was 5 months ago. ( I used to do tattoos now I find it extremely harder then before) 

Shaking. no matter what I seem to do I have them. almost nil but still there

Extreme neck stiffness, so bad I need to keep a pillow behind my head when I sit up

 

These are just a few of the symptoms I am having any and all info (as always) would be awesome

 

Robin

 Are you on any meds?

Some meds can give you that light headed fish bowl effect when you stop this can persist for weeks, also stopping a lot of chems will require your body to adjust to their absence,  giving you some of the possible symptoms.....Glad you are really taking control of your personal health in time you'll  be so much happier and proud of yourself.

 



__________________

53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
Trainhopper


Senior Member

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Posts: 120
Date:
Permalink  
 

I forgot to mention I have lost 25 lbs (1.7? stone) in the last two months



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34yr male Dx 1998 G.T.2b V.L. 2.5 million no current Tx 
Trainhopper


Senior Member

Status: Offline
Posts: 120
Date:
Permalink  
 

Hey good people,

It's been a few days since I was last on. Things have changed a little as far as pinning down what is giving me H.E. like symptoms. I had a Lumbar Puncture (spinal tap) E.E.G., and C.T. scan 2 weeks ago and just got the results this morning. So its a reiteration of whats been suspected. The results are as follows: M.S. neg Parkinson Neg Herpatic brain swelling. No s.t.d.'s in general (YAY!!!!!) Basically they still (with the help of a nuro) cannot figure out what is causing my symptoms. I was actually irritated when the nurse joked with me saying this was like an episode of "House". Other then that I have been keeping my sodium lvl (with tons of effort) bellow 1000mg, marijuana consumption is almost nil ( two hits in 4 days) cigarette consumption is down 2 more cigs a day. ( patches coming on payday) So basically I'm doing Well, Oh my pcp took me off lactulose. and drew more labs.

This website was a God send for me. It has been a wealth of knowledge, and great fellowship. So I will ask for opinions on my symptoms.

 

Constant headaches debilitating, light sensitivity, feels like my eyes are going to explode. 

I feel drunk sometimes. (havent even smelled alcohol in months) equalibrium (spelling?) is messed up bad in the mornings, I almost fall over if I rise to quickly.

Fine motor control is not quite what it was 5 months ago. ( I used to do tattoos now I find it extremely harder then before) 

Shaking. no matter what I seem to do I have them. almost nil but still there

Extreme neck stiffness, so bad I need to keep a pillow behind my head when I sit up

 

These are just a few of the symptoms I am having any and all info (as always) would be awesome

 

Robin



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34yr male Dx 1998 G.T.2b V.L. 2.5 million no current Tx 
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