New Site Roll Call
 

This isn't a daily roll call, just to see who's finding
this site and comments about anything we wish.
I am glad for this familiar format.
Who's responsible for this ?
(I guess It'll be around here somewhere when I investigate further)
I want to thank the person who managed to do this.

Bob,...
 

I think the word is out. - j

I found out!
Thanks DocJohn, for setting up this site.
I'll, go over to FF and thank again.

Hello everybody from Melody
 

Well, Hi Everybody.

Thank God, we at least have this forum. For some reason, I'm so used to this particular format.

Alan is alive and still kicking. He lost 70 lbs. goes to the gym three times a week. He is still on all his heart meds and still takes nothing for his PN.

We use the magnassger a few times a week. But I still have to manually (like his chiropractic/neurologist does), do his spine, pressing down and such. Then the pins and needles go away and he can nap or go to bed for the night.

I was checking out spinal things on the web and came across a DRX9000 machine. Man, what a machine!!!

I know we have probably discussed this on the boards before but with my memory, who can remember.

Anyway, this machine decompresses and compresses your spine.

Takes about 23 treatments and over all the cost can run up $5000. Now I don't know about you but Alan and I do NOT have $5000 to give to these doctors and insurance does not cover this sort of thing.

Thank goodness Alan can still see Dr. Theirl once in a while.

And thankfully, people have stopped asking me if Alan is on chemotherapy because he lost all the weight.

He still drinks 3 whey protein shake a day and has filled out.

Got my stud muffin back!!!

so I hope all of you are doing well!!!

Keep coming on these boards.

Love, Melody

Hiya
 

Just a note to say I am here. And thanks a bunch for the BT2!

rose

Hello world
 

You don't miss your water till the well runs dry.:D

I think I have just experienced something close to withdrawal sxs - perhaps not the full blown real deal, but close enough for me, thank you very much. Good to see folks are coming back home.

I am glad this temp board or whatever it is got back up before my wife and I leave for some family travel. I don't know how much access, time, etc. I will have, so I am happy to have at least checked in.

We will be back at the end of Sept. and I expect to find a fully rocking and rolling board!

rfinney

I'm here!!!
 

Gosh, I missed you guys and gals and this forum. Got lots of news and lots of new things I've found out. But for the time being I'm just grateful to have this site back. I much prefer BT because of the format and so many people I know and love. And the cross talk ability between the other forums. I'll spread the word. I know a few more email addresses.
Love to all,
Billye

Melody...have you a ....
 

new 'adventure' to share with us?

Your expeditions into the unknowns, or knowns, always make my day! AND, rite now, I could use something to live 'vicariously'


Hugs 'n fuzzies!!!!! - j

I'm here too!
 

I have found you and want to share and learn from all of you.

Hi Guys and Gals
 

Hi everyone,

I had made National PNC my home during the time BT was down but really missed everyone on here. I must have checked my computer 5 or 6 times a day. I thought BT was gone forever.

Glad to see everyone on here.:)

Lynn52

I'm HERE!
 

It's great to have our place back! Glad to see everyone here.

Hi Dahlek:

How the heck are you.

I've got a good one for you. this will make all you guys laugh. And believe me, we need to laugh!!! I'm only posting this one time. Don't want to tick anybody off but this one is just too good.

so here goes.

"This couple was married for 60 years. On the first day of their marriage, the wife looked at the husband, pointed to a shoebox on the top of the closet and said "honey, anything I have is yours, but never look in that shoebox". he goes: "okay, honey, no problem".

So for 60 years, she had the shoebox up in the closet and he never looked in it.
On their 60th anniversary, he says to her "Honey, I've respected your wishes for 60 years, but I'm dying to know what the heck is in the shoebox!!!"

She takes it down and opens it and he looks in and sees two beautiful hand knitted dolls. And $25,000. He looks at her perplexed and says. "what's with the dolls and the money?".

She said "Well, every time we had a fight, I would go into the sewing room and make a doll". He was so moved by her sharing this with him, he said "Oh darling, we only had two fights in 60 years and you only knitted two dolls, that's so great, but what's with the $25,000????"

She replied; "are you serious? 'I made so many fu......ng dolls, I sold em!!!!!!!!!!!!!


Now tell me you're not laughing your head off?????


mel

Checkin In~
 

Very funny joke!!LOL
THANX 4 SHARING...
Sorry bout the caps..
Aaaahhhhh it feels like i came home..Just a remodeled home..heehee
I have been checking everyday too!!!
I had surgery on my left arm about a month ago.I had a torn rotater cuff/bone spurs..Now i have a numb hand..Sigh..
I really needed you guys!!!
Did i mention how good it feels to be home???LOL
Ok this is just a check in.I'll put my other thoughts elsewhere...
Kellie<3

glad to be back. i don't post much here, mostly in epilepsy, but i depend on rose for B12 information.

just got a new computer, for the first time i have Excel instead of Quattro Pro. cannot get my Excel to open my Quattro Pro files. so of course i was delighted to see LizaJane, because i really need those spreadsheets back.

please?

Gee folks, as always....
 

Melody, I just don't know how you do it!!!!!!!!!
Kell - how ARE YOU?!!! You've been so quiet, I've worried.
Annie, I replied to your other post here.

We're baaaack! - j

I promise to stop in here--
 

at least occassionally, as we await the fate of the original Braintalk.

For those who haven't yet seen the most recent message--JL must at least now be partially aware of the blogging/consternation/conspriacy speculations, see:

http://brain.hastypastry.net/forums/...prune=-1&f=206

I even read where someone thinks that we are a psychologicale experiment for psych central (which runs these boards).

I went to psych central and they have a little paragraph saying they are allowing us to use their forums until our braintalks come back on.

doesn't sound like a conspiracy to me, what do you all think??

Mel

Hey again
Dahlek
melody
annie
glenn
I was'nt able to use this name{my original}for a long time.I had been using the name {always runnin}right b4 this last crash.I came to log in one day under my old name and it just would'nt let me..I tried everything..So i had to use AR..
I have been in a mental funk..Physical funk!!!
I have missed my BT family soooo much!!!!
I dont know if they are using us or what..So i cant/wont comment on that..
Iam just happy to have found some of my friends again...
Dahlek..Whats been going on with you??
I loved your comment"live vicariously"Thats what i seem to do these daze too...LOL
My memory REALLY stinks anymore...Please forgive me if i have missed anyone or anything...{{{{{hugs}}}
Kell

http://bestsmileys.com/hello/7.gif from JD!

Ain't it great we are getting soupy from "HI's"????
 

I guess it's like going off yer meds cold turkey! Truly, one tends to go: OFF DA WALL! ..and bounce a few times? Ever see a CAT OD..sort of on Catnip? The Z D & T's are amazing [zips, dash, tears]!

Kell, Are things working a trifle better for you? I've had all kinds of good and bad scenarios running thru my furry brain. You don't WANT to know what's happened to me...I started a printout list of events in the last few mo's for my neuro appt. in a couple weeks...The 'Stressors' List, now I look at it, seems to indicate that:Gee given all that, you SHOULD BE NUTSO! I am not YET, nor do I intend to be. Kell, I think I follow your example, after all, you are still typing in complete sentences! Bravo!

I've learned that post-cancer meds along with my neuro meds can probably cause 'dry mouth' which in turn is turning my teeth to trailer-trash[not to mention PC meds can make you VERRY anxious], that the same meds combo is probably aggravating border osteo-to full osteo. That I cannot do the 'simple Curves' workout w/out spraining/straining or breaking something - & this is a workout for wimps [yeah, in a prior lifetime] I've also learned that those med-compatability charts do NOT take into consideration the #'s of meds to create disastrous, amplified side effects. What? only one in 10,000 people are on THAT combo? not in 'puter.. There are no GHOSTBUSTERS to Call! So, I like all of you good, no great people...slog on...trying to make do with the world as it is. Further, what are/were the odds of us getting our PN's? Odds on odds, well, I wouldn't want to bet on it all! Fuzzies in heaps to all! for now...lots more to come! - j

Hey toots!!!

There's a new product out by Biotene. It's a dry mouth toothpaste.
I bought some yesterday at CVS for my Alan.

Don't know if you've heard of it. Probably you have but I just wanted to share.

Take care,
melody

John,

You have our deep and abiding gratitude. Thanks for your efforts, initiative, and generous soul for setting this up for us.

The bad news is, "Do somebody a favor and it becomes your job." :D

Just saying hi to all of you nice folks here!

Cara

Hello maties
 

Very gald to find this forum. I am not certain but it was very difficult for me to locate this forum. I wonder about the other aussies, and if they are having any troubles. SO nice to be here!!!!:)

It's me!
 

If you look closely, there's a something missing from my name here compared to the old one at BrainTalk. And it's a good thing.

Cara, Aussie & Steve....
 

So glad you found a way to get here, Missed you all!

OK Steve, I'll rise to your 'bait', what's HAPPENED? Don't leave us in suspense, after all, the change indicates something GOOD going on and we all can use as much GOOD NEWS as we can find.

Out with it. - j

Well, I'm almost all better! Not entirely, and not without setbacks, but close enough.

I found great help moving away from the "diagnosing" professions like neurology to the treatment-focused professions like physiatry, PT and even TMJ dentistry.

The neurologists stuck very close to the evidence-based research reported on drug-company-funded clinical trials. And there's a lot that those trails do not even study. So I got a lot of blank looks from neurologists.

But when I went to the physiatrists, specialized PT folks and specialized TMJ folks, I heard something unexpected: "Oh, yeah. We see stuff like this all the time. There's not much research, but it's starting."

So, I apparently had a syndrome that involves both nerves and muscles. Nerves overstimulate the muscles (I had fasciculations and many, many trigger points), while muscles (and their effects, like bad posture, tight cervical spine, elevated first rib, etc.) irritate the nerves.

It's a chicken-and-egg question, which comes first. There's a theory it comes from neurotransmitter imbalances in the brain; another suggests an autoimmune attack that goes after potassium channels in nerves (the nerves' "off" switch); and underneath it all are typical musculoskeletal irritants like bad posture, weightlifting, computer use and so on. It apparently also leads to early central sensitization, causing strange referred pain syndromes. The first PT told me she has seen people who get leg pain from manipulation of their jaw muscles, even though this makes no physiological sense at all. She also said that without intervention, this can lead to things like full-blown TOS or RSD.

In my case, a physiatrist told me my adverse reaction to Levaquin years ago may have predisposed me to systemic reactions like this.

Anyway, did at lot of work with PT, dentists, trigger point release, biofeedback, and stuff I can't even remember. I remember the first trigger point session I had. My arms had been so sensitive it was hard to wear sleeves or put my arms on armrests or a bed. Riding home, they still hurt but there was a very strange change in the sensation--like it was breaking up into separate pieces, if that made sense. Over time, I got better, and my last physical therapy session really reduced the holding-a-red-hot-cactus sensation in my hands that made it almost impossible to use a PC.

End of story: I got better! I'm almost back to normal, with some setbacks now and then. Now I have to pick up my business, which suffered under neglect (anybody need a high-priced marketing copywriter :D ?), but I'm very happy about my health.

I've been meaning to share this, because I've noticed some people on this boards with patterns that strongly suggest a syndrome similar to mine, and I just wanted to pass along the good news.

Well, that was kind of long, but that's my story!

Hi Steve
 

I am very happy to hear you have been doing so well. I don't have the medical knowledge that alot have on the forum, and as such had to read your post 3 times:D .

But what I did get is that you have found a large degree of recovery through PT. Regardless you have found relief,and you sound like a new person.

One of the things that I don't like is that all those wonderful archives and old posts are not available anymore, either temp or perm.

But from memory, did you not have a fully body syndrome somewhat like myself and glenntaj?

May I also ask what the PT entailed?

Once again, I am very very happy to here you are doing so well.:)

Still is a mystery.
You had a nice lenthy post there, and I'm gald you're feeling better...........but
WHAT'S MISSING (?) (from your name)

At BT1
 

when I first tried to log in, most of my choices were already taken (it's a much bigger forum!). So I signed in as "SteveInTrouble." Now you know what's missing.

Aussie, you're one of the people whose symptoms seem most like mine, and if I had to guess, I'd say you have what I had. As I said, nobody knows what triggered my sx--whether it was neurological, or musculoskeletal, autoimmune, an endocrinopathy--no one knows. However, what kept it going was muscular and connective tissue actively compressing nerves in multiple places all over my body. There was also something going on with my brain, which was becoming oversensitized and producing "flash" burning sensations (these were different from the steady burns in my hands) as well as bizarre responses to touch on my face. At one point, they wanted to do a functional MRI, because they've found anomalies in a lot of people with facial pain. But I got (mostly) better first!

Here are some highlights from my therapy program. I think doing everything together is what helped me.

- I started with trigger point massage. Don't get fooled by the word "massage"--it's not a spa treatment, and it's fairly painful. But there is almost no other way to get rid of trigger points. The massage not only made me better, but it was the way I discovered that some of my symptoms were related to neck problems.

- I had TMJ, so I got appliances for day and night. I also had two biofeedback sessions, which were hugely helpful. My neck muscles were electrophysiologically exhausted, I found, and I also had lost the ability to relax muscles at will--they remained tense even after I put my arms down, for instance. It only took two sessions to learn how to address that, though it took longer to fix. Also for TMJ, I got specialized trigger point massage inside my mouth--painful but necessary. I had to rexamine my posture, computer use, gym routine, all that.

- I went to a physiatrist and saw a PT who does manual manipulation--very important. So I'd start with a few exercises to warm up and balance out my back strength; I have some syndrome whose name I cannot recall that causes me to slouch and distend my spine and neck. But after that, it was hands-on. The PT did neck traction; she found the connective tissues around my cervical vertebrae were so tight, they were causing nerve irritation. She also mobilized my first rib, which helped my TOS-like symptoms a lot. And she used something called a "wedge" on my spine, which helps separate the vertebrae and loosen the incredibly tight connective tissue I had there.

Believe it or not, that's the short answer! Hope it helps, Aussie; your sx really sound like mine--full body migratory sensory neuropathy with prickling and burning, transient numbness, whole bit. And I mostly got over it without taking a single pill.

The physiatrist, incidentally, as well as the TMJ specialists all told me that while neurologists have not heard of this syndrome, and it doesn't even have a name, they had all seen it multiple times before!

When I was admitted to hospital the first time, they did MRI of brain and neck. Brain was normal, but C-spine showed bulging disc, stenosis, arthritis,and narrowing, no cord compression. I have had burning pain and tingling in neck,arms,and shoulders from this disc for years. But I never knew that it was bulging. But I think what happened to me when my PN came on was quite different. I want to explain more, but I have a full house this morning, alll the relatives have stopped by and I have no privacy now. I will poste later on when I am alone,and can think.:)

sounds like myofascial pain
 

AHHH that's better!! Peace and quiet
 

Ok now before my PN, I had a discectamy on Lumbar spine at 2 levels. I have had a very bad back since 1999, chronic back pain and sciatica. Over last 4 years my neck started hurting too. When I carried my purse or any shopping bags around, the muscles in neck would burn, sting, and ache. But none of this really bothered me. I just accepted it.

Before my PN this was the only problem I had. Before my PN I had both flu/bronchitis and gut infection with H.Pylori. Then PN came on with bizarre burning in eyes,face vertex of head and made it's way downward. To be honest I don't think there is one nerve in my whole body that hasn't been affected as I have been in pain absolutely everywhere. Since 18 months ago when PN came on there has been some recovery and abating. I would say about 50-60% better.

But I have alot of deep tissue like pain,aches,tension,zapping, & prickling. I was diagnosed with post-infectious a typical sensory neuropathy through a process of molecular mimicry. I also have developed hypertension, and what appears to be anxiety/panic. I have just started seeing a phychologist for this because this is probably the thing that concerns me the most. I am sick and tired of the anxiety, it's quite exhausting. I also have a bit of either TMJ or extra pyrimidal symptoms from side-effects of my Trycilic. I bite my tongue all the time,and clench my teeth. My jaw deviates on it's own. :cool: By the way I stopped the tryciclic and my anxiety reached unsurmounted proportions. I had no idea just how bad off I was until I stopped the tryciclic. I am also having trouble sleeping at nights. So that's an update on me. I take hypertension meds,and have to take Advil for pain, but I soldier on, and am thankful that it's not worse. All my routine bloods are continuously normal but my ESR is always slighty raised. (0-16 normal range). Mine is 25-29 ususally. So there is some degree of inflammation somewhere. But that can even be from my discs when they flare. My blood creatinine is usually a tad bit low, but I have had kidneys checked and they are fine. Did a 24 hour urine test. Have been told that slightly low is normal and also good.

But anyone who has any recovery is truly inspirational and gives us all hope. :)

Isn't it all soo connected?
 

Steve, I know you worked overtime swimming upstream against the standard medical tide. I am soo happy that you've found practicioners that were able to bring that elusive word "RELIEF"! Persistence can pay off!
Was it myofascial trigger point? Treatment can be almost as bad as the problem when first starting. I'm hurting just thinking about it.

Aussie, don't give up! It sounds like you are on your journey, anxiety is the pits and it sure doesn't help anything along the way, does it?
It may take time, but your persistence will pay off in the long run, it's got to!

Good thoughts to both of you - j

Thank you Dahlek
 

You have the miraculous gift of positive mental attitude. I appreciate your kind words.:)

Yup
 

It was chronic myofascial pain, though I don't know what problem actually came first and caused the others. It will probably be an ongoing issue for me, and can still be easily irritated; getting sick makes it worse, and winter poses extra problems, because cold worsens muscle tension. But it's certainly a lot better than it was!

Yes, the treatment was painful. As time went on, I felt that "hurts-so-good" feeling people often report. But at the beginning, the pain was awful. The neck muscles were so dysfunctional, massage felt like the therapist was snipping my skin with a nail clipper. However, this is one area in which the saying is true--no pain, no gain!

Now, even the tinnitus is better, but I sure wish I could get rid of it once and for all.

Steve, silly as this sounds, it works...
 

and has worked for athletes for over 40+ years, and for performance animals for 30[?] years. I'd learned techniques on large animals over 20 years ago, and well...their whole attitude would turn to peanut-butter...after the 'initiation' phase! YEP, FEELS SOOO GOOD WHIN YA STOP! I'd seriously been considering animal therapy courses when my magic fingers went DEAD. Oh well.

Touchy-feelie? Who cares if it does the JOB? Never exclude the outlets you instinct tells you to go to. EVER. I am just happy that there's one less hurtin' person in this world.. There's enough elsewhere for sure. -Explore what's proven to help, and can't hurt, don't waste $ on fringe things, and well, hope for the best elsewise!

Aussie - you are getting there! - j

I massage Alan every single night!!!!
 

Even when I use the magnassager, sometimes I have to do it with my own two hands. The magnassager is terrific but nothing beats my hands.

Sometimes when the PN is so bad (like if the weather is not cooperating), I have to knead his upper thighs and he says the blood just goes right into his feet. He absolutely says it's the greatest feeling in the whole wide world.

Then I take my arms and roll them (pressing hard) up his spinal column.

I had shown his chiropracto/neurologist what I do and he said "hey, it seems to work so keep doing it". Never had a bad reaction since I've been doing it and he is like a new man.

I do his shoulders, his neck, but when I start from the middle of his back, and do my thing with my whole arm and I press into his spinal column, it says "this is the best thing since sliced bread". Now believe it or not, Alan has bulging and degenerating discs.

I'm just happy that I can do this and I don't break his spine when I do it but he's a different person since he gets the adjustments from the chiropractic/neurologist. He only goes once a month now so in between the visits he has "ME".

I once had my 85 lb girlfriend walk on his back. He went nuts, he was in heaven.

I mean, don't the japanese do this in the massage parlors.

I would love to see his face if I walked on his back. Can you imagine? I'd kill him. But my girlfriend is anorexic and soaking wet, she's 85 lbs.

When he told his chiropractic/neurologist that my friend walked on his back he said "we really don't advise that, because she can push something out of place"

Really?? then what the heck am I doing when I take my arm and press into his spinal column and go up and down. And when I put the magnassager into his back, that sucker really gives a deep tissue massage.

I think massage is the best thing (if it's done correctly). I only wish Alan would learn how.. When he does it, it feels like a wet noodle.

He has no idea how to give a massage.
I should have gone into the business.

mel

Better late than never
 

Just thought that I would clock in as an old (and getting older) braintalk skulker.

For those that know me, hi.........for those that don't, nice to meet you and I hope you're doing ok..

Graham