22 replies to this topic

[rkzenrage]

I know I'm usually pretty long winded, but... my condition continues to get worse and it is speeding-up rapidly.
My kidneys are still a problem, I'm having trouble going the the bathroom, the pain is much worse (I'm on morphine now), my immune system is so wracked that I have a fungal infection in my skin (all over), and the thing I'm most freaked-out about (this seems so whiny talking to you guys about it, but who else could understand?)I'm losing the feeling in my legs.
I have a wonderful support structure, wife, son & family... but I am close to that very dark place. Mostly, I feel overwhelmed. Insurance, the specialists-bop, ssi, test testy test-test-test, etc, etc, etc...

[janie clarice]

Hang in there, buddy. Know your not alone. Good that you have family support. I think this is my first post, I have received so much support through this site, even though I've never said anything. You just be as long winded as you like, cuz there's always gonna be someone here, like me, that will probably benefit from it. My heart goes out to you. I feel ya.

[The Black Sheep]

Hang in there! We're here for you as much as we virtually can be. I pray you improve or the testing comes up with something that they can fix. =)

My best wishes are with you.

[mellowgator]

rkz,

sorry life is difficult now. i'm from central florida and if possible i think you should get evalutated at sheppard or someplace that deals with a lot of sci. i don't think that many doctors in our area know much about sci and may be missing the mark with your diagnosis. shands or possibly jackson memorial are also a better bet than what o'ville has to offer.

for all you know you could have a disease or disorder that if diagnosed could be improved upon. i'm sorry that you are feeling down. pain leads to depression. you aren't alone.

i hope you find the help you need to recover.

best wishes,

mellowgator

[qbounce]

This rash, does it itch? You're losing sensation in your legs . . . . are you also losing muscle? And your having trouble with your bowels too, right? Do you feel more tired, or are you having difficulty doing the easiest of things

Check out the Craig Hospital website and look up Scott Falci. MD. You may have Tethered Cord. Dr Falci's cover page has the symptoms of TC and it covers Blotchy skin, sensation and muscle loss and bowel issues, and of course, pain.

I'm not saying this is definitely the cause of your symptoms, but it couldn't hurt to E-mail his nurse, Charlotte with a full list of your symptoms. She's really good at responding reasonably fast. Hope you get it resolved soon.

Also, you've never filled out your about me page, so I could be completely off base depending on your type of injury.

[1positivethinker]

Sorry to hear, but you are definitely not alone....I am feeling a bit overwhelmed at the moment as well......hang in there, you have great support and can get through this!

[stillgotswag]

hang in there bro. you survived SCI.

[wheelywendy]

hi their, not really much i can say to help you, wish i'd got a magic wand then i'd wave it for all of us, however just wanted to say your not alone were all here for you, hope the tests bring something positive, try to keep your chin up (not easy at a time like this i know) glad you have good family support that will help you lots, thinking of you wendy

[slyd]

Hey there . . . we're with you . . .
Is there no chance a laminectomy would reduce the pressure and resultant progression ..?????
Please get more educated opinions on your condition (get the BEST). The earlier the intervention on the progression, the greater the return . . .
Just the opinion of a guy whose progression was stopped 9 years after start

[E-DOG]

 rkzenrage, on 15 August 2010 - 12:11 AM, said:

I know I'm usually pretty long winded, but... my condition continues to get worse and it is speeding-up rapidly.
My kidneys are still a problem, I'm having trouble going the the bathroom, the pain is much worse (I'm on morphine now), my immune system is so wracked that I have a fungal infection in my skin (all over), and the thing I'm most freaked-out about (this seems so whiny talking to you guys about it, but who else could understand?)I'm losing the feeling in my legs.
I have a wonderful support structure, wife, son & family... but I am close to that very dark place. Mostly, I feel overwhelmed. Insurance, the specialists-bop, ssi, test testy test-test-test, etc, etc, etc...

Well maybe if you believed in JAY-ZUZ you'd get better real soon!
Why don't we get you a bible and........

Sorry kiddo, I know this is a serious topic, and you ain't NEVER gonna pick up a bible (you'd have to be crazy, and I know you ain't crazy!) But some one who doesn't know you might otherwise say it in ernest and I know you you don't want that.

E-dog / roving atheist gone off the reservation BIG-TIME

[wheeliebear75]

rkzenrage.....I don't have any wands to wave and wouldn't ya know it....I'm fresh out of pixie dust.......HEY TINK....where the heck did ya go?!?!?!? But I hope knowing people care about you & your health troubles helps and that we're all in this F'd up fight together always seem to help me....so I hope it will also be of some comfort to you also.

[greybeard]

Just keep on buggering on, as Winston Churchill used to say. That seems to be just about all most of us can do. But remember you're not doing it alone. There be a hell of a lot of buggering going on around here!

ps - Telling us what you're most worried about certainly isn't "whiny". We probably all dread losing a bit more of the function/feeling we have, and talking about it can help us come to terms with it.

Sending you positive thoughts.

Edited by greybeard, 15 August 2010 - 10:20 PM.

[edlee]

Hadn't seen any posts from you lately rk,,, wondered how you were doing,,, now I know. Hope that changes soon.

As for the rants/whining,,, that's what we're here for, big guy.

As was said above,, maybe it's time for a change of doctors,,, not saying your present ones are stupid or anything,,, just that sometimes a fresh viewpoint is useful. ( And maybe they ARE stupid)

Hope to hear more and better from you soon.
ed

[S&W Winger]

Sorry to hear of this...but like others have asked: have you exhausted all avenues? Perhaps there may be hope?


Regardless of your situation and outcome, you know you have us here for support...and venting is not whining or whinging or poor-me-ing...please let us know how things are going...and please also check into what others have posted...

[rkzenrage]

 mellowgator, on 15 August 2010 - 01:21 AM, said:

rkz,

sorry life is difficult now. i'm from central florida and if possible i think you should get evalutated at sheppard or someplace that deals with a lot of sci. i don't think that many doctors in our area know much about sci and may be missing the mark with your diagnosis. shands or possibly jackson memorial are also a better bet than what o'ville has to offer.

for all you know you could have a disease or disorder that if diagnosed could be improved upon. i'm sorry that you are feeling down. pain leads to depression. you aren't alone.

i hope you find the help you need to recover.

best wishes,

mellowgator

Thank you. Do you know how I can get in touch with sheppard, never heard of it?

[rkzenrage]

 qbounce, on 15 August 2010 - 01:26 AM, said:

This rash, does it itch? You're losing sensation in your legs . . . . are you also losing muscle? And your having trouble with your bowels too, right? Do you feel more tired, or are you having difficulty doing the easiest of things

Check out the Craig Hospital website and look up Scott Falci. MD. You may have Tethered Cord. Dr Falci's cover page has the symptoms of TC and it covers Blotchy skin, sensation and muscle loss and bowel issues, and of course, pain.

I'm not saying this is definitely the cause of your symptoms, but it couldn't hurt to E-mail his nurse, Charlotte with a full list of your symptoms. She's really good at responding reasonably fast. Hope you get it resolved soon.

Also, you've never filled out your about me page, so I could be completely off base depending on your type of injury.

I will ask my Doc to look into it, thanks. Yes, I have all the symptoms.
I can't find his/her site.

 E-DOG, on 15 August 2010 - 09:35 PM, said:

 rkzenrage, on 15 August 2010 - 12:11 AM, said:

I know I'm usually pretty long winded, but... my condition continues to get worse and it is speeding-up rapidly.
My kidneys are still a problem, I'm having trouble going the the bathroom, the pain is much worse (I'm on morphine now), my immune system is so wracked that I have a fungal infection in my skin (all over), and the thing I'm most freaked-out about (this seems so whiny talking to you guys about it, but who else could understand?)I'm losing the feeling in my legs.
I have a wonderful support structure, wife, son & family... but I am close to that very dark place. Mostly, I feel overwhelmed. Insurance, the specialists-bop, ssi, test testy test-test-test, etc, etc, etc...

Well maybe if you believed in JAY-ZUZ you'd get better real soon!
Why don't we get you a bible and........

Sorry kiddo, I know this is a serious topic, and you ain't NEVER gonna pick up a bible (you'd have to be crazy, and I know you ain't crazy!) But some one who doesn't know you might otherwise say it in ernest and I know you you don't want that.

E-dog / roving atheist gone off the reservation BIG-TIME

I've read several bibles seveal times... s-why I'm an atheist.
Thank you, and everyone, for your kind thoughts, it makes a difference.

 slyd, on 15 August 2010 - 01:58 PM, said:

Hey there . . . we're with you . . .
Is there no chance a laminectomy would reduce the pressure and resultant progression ..?????
Please get more educated opinions on your condition (get the BEST). The earlier the intervention on the progression, the greater the return . . .
Just the opinion of a guy whose progression was stopped 9 years after start

I've already had a double laminectomy, and it did help. I'm getting radio-frenquency too, it helps with spasms and pain, but not these symptoms.

 1positivethinker, on 15 August 2010 - 02:11 AM, said:

Sorry to hear, but you are definitely not alone....I am feeling a bit overwhelmed at the moment as well......hang in there, you have great support and can get through this!

Sorry you are having it rough too, I hope you are doing better soon. As for me, having people like you to talk with helps me, I hope it benefits you as well.

Edited by rkzenrage, 16 August 2010 - 07:29 PM.

[dangerousdave]

I don't think any of us will get better it's just a case of how quickly we get worse
Age, drugs, side affects, function loss - man I sound depressed
But i'm not
My health has been in freefall since 1995 and the deteriorization is increasing
I just find new ways of coping
Apart from foot rot though, there is no big fungal problem
Anti biotics are used more often now for various ailments and those minor ailments last longer or turn into major ailments
So hang in there, find your answers, your not alone

[mahmutkaplan]

 rkzenrage, on 15 August 2010 - 12:11 AM, said:

I know I'm usually pretty long winded, but... my condition continues to get worse and it is speeding-up rapidly.
My kidneys are still a problem, I'm having trouble going the the bathroom, the pain is much worse (I'm on morphine now), my immune system is so wracked that I have a fungal infection in my skin (all over), and the thing I'm most freaked-out about (this seems so whiny talking to you guys about it, but who else could understand?)I'm losing the feeling in my legs.
I have a wonderful support structure, wife, son & family... but I am close to that very dark place. Mostly, I feel overwhelmed. Insurance, the specialists-bop, ssi, test testy test-test-test, etc, etc, etc...

I say one thing. You have a son. You should fight everything for your son.

[qbounce]

rkz,
Sorry I'm so computer illiterate because I'd love to copy and paste links, but haven't a clue yet how to. So for now I'm just going to give you these names and allow you to TRY Google/ Bing them yourself.

Dr. Barth Green of the University of Miami, Miami Project, in . . . . you guessed it, Miami, FL.

Dr. Scott Falci at Craig Hospital in Englewood, CO.

They are both Neurosurgeons specializing in post-traumatic SCI, in Syringomyelia and Tethered Cord, two of the more common causes for loss of function and/or sensation after SCI.

If your test results don't show any formidable conclusion as to why you're losing function/ sensation, you very likely have TC. Dr. Green, I've heard, isn't the easiest one to get a hold of unless you get a referral from another doctor, but that's only hearsay so you should give it a shot anyway. Dr Falci was very easy to get a hold of, if you can locate his site. Good luck!

[DellFan]

Hey!

Just wanted to say I'm thinking of you. Keep your chin up!

Dell

[mellowgator]

 rkzenrage, on 16 August 2010 - 06:24 PM, said:

 mellowgator, on 15 August 2010 - 01:21 AM, said:

rkz,

sorry life is difficult now. i'm from central florida and if possible i think you should get evalutated at sheppard or someplace that deals with a lot of sci. i don't think that many doctors in our area know much about sci and may be missing the mark with your diagnosis. shands or possibly jackson memorial are also a better bet than what o'ville has to offer.

for all you know you could have a disease or disorder that if diagnosed could be improved upon. i'm sorry that you are feeling down. pain leads to depression. you aren't alone.

i hope you find the help you need to recover.

best wishes,

mellowgator

Thank you. Do you know how I can get in touch with sheppard, never heard of it?

sheppard is a rehab hospital in atlanta. it's the 2nd best in the country behind craig in colorado.


http://www.google.co...16V5PHi5rBXhqKw

best wishes,

mellowgator

[Califanna]

 mellowgator, on 15 August 2010 - 01:21 AM, said:

rkz,

sorry life is difficult now. i'm from central florida and if possible i think you should get evalutated at sheppard or someplace that deals with a lot of sci. i don't think that many doctors in our area know much about sci and may be missing the mark with your diagnosis. shands or possibly jackson memorial are also a better bet than what o'ville has to offer.

for all you know you could have a disease or disorder that if diagnosed could be improved upon. i'm sorry that you are feeling down. pain leads to depression. you aren't alone.

i hope you find the help you need to recover.

best wishes,

mellowgator

I so agree with Mellowgator and you should try to get an overall evaluation from a Physiatrist at one of the centers she recommended. I started to get weaker last year and found out that I now have an autoimmunue condition which weakens the muscles and wreaks havoc with nerves(I had intense pain and fatigue). So check it out, if your insurance will allow, and get someone to look at the whole picture. It could be something else.

Califanna

[rkzenrage]

 Califanna, on 22 August 2010 - 01:12 AM, said:

 mellowgator, on 15 August 2010 - 01:21 AM, said:

rkz,

sorry life is difficult now. i'm from central florida and if possible i think you should get evalutated at sheppard or someplace that deals with a lot of sci. i don't think that many doctors in our area know much about sci and may be missing the mark with your diagnosis. shands or possibly jackson memorial are also a better bet than what o'ville has to offer.

for all you know you could have a disease or disorder that if diagnosed could be improved upon. i'm sorry that you are feeling down. pain leads to depression. you aren't alone.

i hope you find the help you need to recover.

best wishes,

mellowgator

I so agree with Mellowgator and you should try to get an overall evaluation from a Physiatrist at one of the centers she recommended. I started to get weaker last year and found out that I now have an autoimmunue condition which weakens the muscles and wreaks havoc with nerves(I had intense pain and fatigue). So check it out, if your insurance will allow, and get someone to look at the whole picture. It could be something else.

Califanna

Got a ct scan. I do not have Teathered... my pin prick test went very weird. I hope I know soon.