New Title
 

Hey! Just realized this forum has a name now. Looks good!!
Thanks,
Billye

Yep Billye, looks pretty snazy too.
Makes me laugh when i see " junior member " on the some of most experienced members of the old forum.:D
take care
Brian :)

I'm glad this forum exists
 

and am disappointed so many are going back to BrainTalk. John collected $10,000 from us when the server crashed (he said) last time, and then went on to spend it buying a lot of land on a virtual-reality site called Second Life. He now works for the parent company for Second Life, Linden Labs.

My disappointment is with John's 1) dishonesty, 2) treating us shabily, 3) neither John nor his Moderators communicating with us as a group or individually.

In contrast, this forum is run by a caring and ethical person. I'll continue being somewhat active here, and not there.

Billye, when are you going to the Mayo Clinic?

I agree with Wings..
 

I also have gotten quite comfy here. I wonder what has happened to Dan Hicks?

Did not know...
 

...this site even existed until I read something about it in a message on BT when I realized that site was back up and running. I wish I had known about this site as I spent the last two plus months adrift without reading information from BT the first thing in the morning upon turning on my computer.

Wings states, "...and am disappointed so many are going back to BrainTalk." I wonder if this is because so many people still do not know about this site???:confused:

I will be sticking with this site after reading some of the background of BT through various messages - things happening that I had no clue about.

I am also interested in the Vitamin forum as it has been helpful in reading and gathering information as it relates to my PN. I will be posting my story with updated information later today or tomorrow.

Diana Shaffer:)

Well...
 

I for one also enjoy this forum.

However, I post for the people who are asking questions, and need help.
Refusing to post at OBT as a protest, does not impact or "hurt" the admins there. It only hurts those who visit and get no response. We have never had a moderation issue of huge consequence at OBT on the PN board.. I think we were rare in that respect. (we did not have long time members banned commonly, except for yours truly ;) )But if OBT rubs your own convictions so strongly, then it is best not to go there. I think that is a personal decision however. I can put my own feelings aside most of the time, if a greater reason overrides them.

So I go where there is the need, basically. But I am considering NOT posting data any longer at OBT because we have LOST data twice now there.
If they restore the archives, I will change my mind about that, so time will
tell.

For now I am only posting data, here. But I do read both boards now.

For Wings
 

I'm supposed to be at Mayo on Dec 4th. I'm planning to email or call Liza Jane and let her keep you all up on this journey. Don't know if we will have access to a laptop for the trip. I can't justify buying one just for the trip. We have two computers at home. "His and Hers) :) I've gotten more and more anxious as the trip time is nearing. This is a huge undertaking for us. Thanks for asking.
Love,
Billye

I just 'ran off at the mouth' on Liza Jane's thread- so I won't repat it here.
Bottom line, I'm glad Doc John gave us a place, when it was needed -to fill the gap.
I hope that this place stays, and will attract people who genuinely are interested in the most important factor - people, and answers to thier pressing questions.
Mrs D said it quite well.
"I for one also enjoy this forum.
However, I post for the people who are asking questions, and need help."
I hope she, and others like her- continue to be here, and anywhere else they are needed.
I'm here because of the wealth of knowledge I can gain - and to find answers to my questions. I think I'll stay, too.

I'm following in BobB's tail-wind..
 

dittoes! - j

Name BTW, and Logo design are good! - j

I will also be at both forums--
 

--keeping in line with what Mrs. D about answering questions wherever they are posted. (I also spend time at the forum of the Neuropathy Association for the same reason.)

I too am wary about posting data at OBT--I have set up some general data sites in a "sticky" there (similar to the one I put in the "sticky" here), but little else beyond some sites about imparied glucose tolerance and neuropathy (in response to a questioning post). I fear it being lost again.

Moreover, I am not sure yet if OBT has regained enough trustworthiness to get my allegiance in the sense that I would refer people to it who are new to neurologic disorders. I used to do that constantly, and would link them to threads on Braintalk, but I am loath to do so now, at least until we accumulate more evidence that the board will be monitored and administered fairly. (I was one of the people who argued long and hard, in the Forum Feedback area, that we had been ill-served by the recent developments and lack of communication about them, and I tried to advance the proposition that John Lester owed the community he founded but that we built not only attention to technical aspects, but adminstration decisions that were not arbitrary. I also argued this was owed to us as we, by making the forum as famous as it was, indirectly helped him set up others, including the Brigadoon Island in Second Life, and that this fame had also led to many lucrative opportunities for him. This, of course, met with a mix of responses.)

I am fully aware that no one has any legal obligation to run a website democratically, but I still hold out that there is a moral obligation to do so.

I haven't posted much anywhere lately, but that is due more to my shoulder injury and my inability to sit at the computer for long periods in a keyboarding position. The torn muscles are just starting to heal six weeks in, with the help of a lot of physical therapy (acupuncture, ultrsound, myofascial massage). I'm now able to at least sit at the keyboard for some length of time.

Some, of course, may argue that given my usual long-windedness, my injury was a boon to the boards. :)

I noticed we have a new member posting here and just wanted to say Hello and Welcome!

I think I've seen most of the other users around awhile- but just in case you didn't get a welcome when you joined...
hello & welcome

I have wondered about Dan Hicks too? knew him from the general forum topics section at OBT

Yeah.. I wonder where he has gone off to.
 

One gets so used to seeing some of the faithfull members,that when they disappear it's a bit unsettling. I also wish that this new Forum would be the forum everyone used. I don't like going back and forth. I only lurk on the old one now, with no posts as of yet.

Glen, I am glad to hear that you are slowly recovering. I'm sure this was the last thing you needed. How is your PN holding up in all of this?

I think Dan Hicks had not been posting at BT for quite a while before it crashed. I couldn't tell you exactly when he stopped or why, but I had noticed his absence for some time.

We have a split board with Gluten Sensitivity/Celiac Disease, now too, and we completely lost a fair number of members during the 'outage'...some people just found other places to post and haven't returned. (or they broke that addiction...lol...don't they say it takes 21 days to break a habit? we were without a forum for longer than that)

I really like it here, too. We have been assured we are here to stay, and because Doc John leases the servers (rather than own) there is much less risk of any extended downtime and data loss. I also like the moderation team concept here, and think there is much less risk of things going wrong in that area, as well.

But... I found it hard to walk away from BT completely. Old members still trickle in there, and some new people find their way, too. Some boards have mostly moved back there (like child neuro), and have members who might like to cross post within BT. Google will bring new people into both boards. I can't stand the thought of someone entering an empty forum and not being welcomed, so I check in on both forums daily...to answer questions, direct to information, etc. My loyalty is to spreading the word about gluten sensitivity and neurological disease. I can certainly understand those who have bigger problems with things that happened there, who have no desire to go back or look back.

I put most of the information important to me into The Gluten File (website edition), so that is how I solved that issue for the information I collect and maintain. I don't think anyone will be building any stores of data at BT, though, at least not without keeping their own back ups. It is a lot of work to rebuild it. I've done that a couple of times, and frankly have lost the motivation to keep rebuilding.

It has been hard for everyone :(. It is still hard for some, but life goes on and the sun will shine again :).

Welcome Diana!

Sorry to hear about your shoulder, Glenn :(. Hope it will get back to normal soon. I don't mind your long-windedness at all (from one lw to another :D).

Cara

I have been jumping one to the other too. not knowing what to do.
The bit what i couldn't understand is why it took so long to get Braintalk up and running again, like if i have a hardware or even a software problem on my PC , its normally fixed that day and i have to travel 40 kilometres to get parts for it.
Backing up important files is so easy to do, its not very time consumming just a couple flicks of the mouse or shrink it and through a cd in the cdrom,or a few cd's ,big deal., crikey it only takes me about 5 hours to build a pc and have it up and running in that time, and i have no computor training what so ever, i am a retired coach driver, most school kids could probably do it quicker than me.
I have no idea what the setup is to run something like Braintalk, i would imaging that there would be lots of hardrives backing each other up all the time, maybe Wings42 [David] could explain it, i am pretty sure he was a professional computor bloke, he may be able to explain what it takes to set it all up & why its taken so long.
Anyway i am comfortable here as well, but i wish everyone else was here, not split up the way it is now.

I can't imagine why it would take so long to bring the system back up, and why the database was lost.

At every place I worked, we had disk mirroring (two or more identical disks being written to at the same time so that if one crashed, the other[s] would have all the data), periodic and frequent multiple backups stored off site for complete restorations (except for entries after the latest backup), and transaction journals on the databases to complete the data restores for transactions after the last backup.

Given the extreme length of time it took to bring BrainTalk back up, the failure to restore the database, the lack of communication with us during the crash, and the poor communication since, my opinion based on 20+ years in the business is that neither John nor anybody else tried to bring BrainTalk back up for a long long time, that backups weren't made, that crash safeguards and procedures were not in place, and that BrainTalk and it's client community were an extremely low priority to John and his staff. The slow response or lack of response from BrainTalk moderators and from John himself may very well be because they aren't there and don't care. After all, they have a real job at Linden Labs now.

I've written them off. I'd like to get back on to BrainTalk to let people know about NeuroTalk, but I'm not desperate either, thanks to Dr. John. The one thing I am desperate about is getting the old "Stickies: Useful websites" back. That was a precious resource for all of us that took years to build.

Thanks David, that really shows the lack of consideration they had for those caring people who put so much of their valiable time into making Braintalk what it was, it was mountain of valiable information that was critical for so many people that were struck with this horrible disease.
That really gets under my skin :mad:

Certainly can see Wings' point-of-view . . .
 

. . .even though, like jcc and Mrs. D., I do sort of feel morally obligated to continue to check OBT and to provide info/answer questions when approrpriate, especially to newbies.

BTW, if anyone is interested, I basically tore the right trapezius muscle off the shoulder blade while weighlifting. I also apparently tore part of the rhomboids (deeper muscles) on that side. The physiatrist who first examined me, in my question mark position of pain, said that this took considerable talent. :) (I've apparently overdeveloped some muscles at the expense of others over the years of lifting, and applied too much torque--as I've said before, my workout motto is anything worth doing is worth overdoing.)

The pain was enormous, but it wasn't neurological pain. It was good old-fashioned nociceptive pain, with a lot of tightness and pulling besides. The neurological symptoms, though, were the most intriguing part of this--not my "usual" small fiber pain, but a tingling numbness in the back of my right hand near the first knuckle and extending into the webbing of the hand and up the inside of the thumb and forefinger to their tips. It became obvious I had compressed some part of the medial nerve branch in the nerve root area near the displaced shoulder, and/or possibly in the area where the arm extends from the shoulder. This symptom is still present--a little bit improved; I imagine with the "crush" phenomenon and the fact that all of us with nerve damage are far more prone to compressive effects than "normals", this symptom is going to be of long duration. My priority is getting the anatomy back to its former place to take the pressure off the area.

A most interesting thing in all of this has been attempting to educate the physiatrist and physical therapists about these symptoms. Some are more open to listening to a patient than others. I often have to pull jargon on them. (They didn't know my background; you can be sure they do now. ) :)

Hi,

I am new here but am also a member of BT. I normally post in the Spinal Disorders forum but also have PN. What I really want to say is that I have read everyone's posts here and I think things have been very well said! :) I find this site much more friendlier and welcoming. I also like the Mission Statement here along with how moderation is handled. So, I just wanted to stop in and say hello and I think I am here to stay. :)

Ouch! Glenn! That sounds horrible, and like it may take a long time to mend. Is there a chance you will need surgery to repair anything, or just time...lots of time?

Hi Kathi49! Nice to meet you. I think everyone has expressed some valid viewpoints here, too. We all have slightly different perspectives on things for various reasons, depending upon our experience and circumstance, and that's ok :). It is a really nice place here, and I'm glad you have decided to stay!

Cara

David, you said "........ The one thing I am desperate about is getting the old "Stickies: Useful websites" back. That was a precious resource for all of us that took years to build."

As I thought about this, I seem to remember a post about JL (I think it was in Forum Feedback). It had something to do with him walking home in the rain and realizing that he had these CD's in his pocket, that were the backups of OBT.
He then spoke about realizing that he was carrying thousands, if not hundreds of thousands of people in his pocket. Then, something about it being a humbling experience and him being the sole keeper - in his pocket- of so many needs and desires of people with neurological problems.
He went on to state that he made these backup CD's regularly and they were not kept at the 'hastypastry' building, but taken home to his place. He also mentioned something about making space at this place for storage, as he was running out of place(s) to put them.
Weren't these CD's the OBT backups/archives?
Were they used for something else and then 'lost'?
I just have this nagging feeling that our info/data was not lost- and retrieval of it, lies just around some corner-somewhere. But it isn't worth the time or the effort to get it back on-line where we can use it.

Glenn, I guess you aren't the only one who could be accused of being 'long winded' in posting replies.
(So sorry about your arm/shoulder :( I hope you recover quickly)
I have been known to 'run off at the mouth' - frequently. ;)

glenntaj-
some of your shoulder pain and symptoms sound almost like thorasic outlet syndrome{TOS}.

weightlifters can and do get it - so be cautious- with your rehab.
plus it is a somewhat repetitive motion injury /posture related issue too.

If your interested in more info or links about TOS see out forum here and our stickys.
TOS info: the first links in our sticky list
http://www.nismat.org/ptcor/thoracic_outlet/
http://tos-syndrome.com/newpage12.htm
http://tos-syndrome.com

this has the weight lifter references-
http://www.acofp.org/member_publications/thoracic.htm

oh, Glenn...how awful for you...
 

This sounds very similar to my leg issue, from a year ago!

It takes a LONG time for these soft tissue injuries to heal and they are mega mondo painful. Are you getting
ultrasound and IFC treatments? These really took my pain levels down
dramatically.

My PT cautioned me over and over, about sudden movements, or sudden
strains. I have several health club no-- nos now, and weight limits on the machines. Even tho I am strong, and can do 240 lbs on the leg presses, I am no longer allowed things like that. You might have to sacrifice weight with more reps. As we age, we do not handle these strains well. Even with stretching. I also think the PN (autoimmune issues like Gluten) wear on the connective tissues alot.

And you might investigate Biofreeze. This topical gel has been marvelous for me.
They sold it at my rehab place. Now I buy it online. I even use it on my feet too.

When my pain was at its height I used Lidoderms on my lower back to intercept the pain signals before they hit the spine. Lidoderm might help you sleep etc.

But estimates for my recovery were grossly off target. I was told 6mos..and it has been a year now, and I am just getting my stamina back, and the limp is almost gone. The major pain left for me during the IFC and ultrasound..the 24/7 pain that is. Now I don't even need Tylenol except on very bad days. But my range of motion is not 100%, and I can still feel it if I move certain ways. So don't become frustrated if it takes longer than you expected.

There are some nutrients that may help
Vit C
SAMe
Tumeric/ginger for inflammation
silica (found in green beans and bananas-- and beer which you cannot have on your gluten regimen)

I would avoid continuous use of NSAIDs...even tho doctors give them. Every day use, suppresses the healing Cox-2 cytokines (yes some Cox 2 cytokines stimulate healing!) . This will happen at about 4-6 wks...so intermittent use for pain is okay and should not interrupt normal healing. Sometimes an icepack will do wonders instead of Ibuprofen.
Strangely, ibuprofen only started working for me when I reached pain levels of 3 or so. In the beginning it was useless! But now I can take 600mg of Ibu on a bad day or long shift at work and get a 8hr or more effect.

I have a website (provided to me by Jo55 a while back) that sells home units for IFC treatments when your PT runs out. It is nice to have it at home, and worked well for me. (about $140.) IFC is healing whereas TENS do not. What I was told at my sessions was that adhesions form with the fascia, and that is something that leads to pain with motion during healing.

Don't hesitate to email me.. if you need further support. I can really understand your plight... it was a totally rough year for me as well!

Love,

Thank you all for your concern.
 

I actually just came back from PT--today was TENS, ultrasound, and a lot of stretching. Acupuncture is scheduled for Friday.

Jo55, you're right--one of the first things I thought of was that I had created a thoracic outlet syndrome situation, in that I had overdeveloped muscles in the area at the expense of others and the sudden, traumatic "rip" had compressed that area. The physiatrist doesn't think it would be labelled such, based on the mobility and provocation tests--he did a lot of the tests outlined in the websites, and the neuro symptoms are only sensory and seem to concentrate on one branch of the medial nerve. But given my neurological history, and the fact that once a person has one neurological syndrome, s/he becomes vulnerable to many others, especially compressive ones, I'm being very cautious about my movements now. (I'm doing most of the stretches shown on the websites, and only the lightest weightlifting--3 pounds! I previously could twirl those on my fingertips--with fewer reps and some motions banned absolutely. Of course, I feel hilariously unfit. I've actually LOST a few pounds since this started. Has to be muscle weight.)

Given the location of some of the tightness, brachial plexus neruopraxia (nerve stretching) is also a distinct possibility. Conservative treatment seems to be the way to go, as I have no motor symptoms and full strength in the forearm, hand, and biceps. Where my strength is still lacking is in the trapezius/rhomboid region (I can really feel this when I'm flat on my back and I try to do a press), presumably where the muscles were torn. (Let's hope I don't need surgery.)

I am improved from two weeks ago, but I seem to have plateaued for now, at least neurologically, with symptoms still in the thumb/forefinger and the webbing and back of the right hand. Fortunately, symptoms have retreated from the wrist area. I may just be in for a long healing.

Mrs. D, I'm hitting the C and SAMe with my usual vigor--I didn't know about the ginger, though. Excuse to eat more Chinese take-out, LOL. Since this started, I've only taken about a total of 18 ibuoprofen; it wasn't doing anything in the early stages, anyway, and the pain calmed down enough that I rejected anything that would have required a prescription. I was/is teaching/tutoring a full schedule, and needed what faculties I have (though many of my students were amused by the interesting positions I had to sit/stand in for a while, and my driving position resembled that of a recumbent biker's more than anything else).

What I'd REALLY like to get--and I'll call Liza Jane for this if needed--is a good, long myofascial manipulation; where I'm now being treated they'll do it for a few minutes as part of a therapy session but it's not a thirty-minute going-over intended to place the tissues back where they should be. Also considering a neurological chiropractic consult (might run into Alan); I'm thinking I really need someone at this point who'll understand the future neurological implications of biomechanical dysfunction in one such as myself.

hmmm...
 

Why are you getting TENS instead of IFC? I'd ask this next visit!

My rehab did not use TENS in therapy. They used IFC. My therapist was
trained in India, and was honest with me about that. She did not believe in
IFC as they don't have it there. But she sees alot of improvements with it
in USA. TENS is for pain relief, but when turned off, the pain returns for many. Two therapists there insisted I buy the IFC unit, not the TENS. Oh, well, opinions vary I guess!

So I would ask next visit. Maybe you are getting IFC and they just call it TENS for convenience?

Glen, i have a permanent injury in the cevical part of my spine that gets aggravated very easily, when it starts up on me, my neck & right shoulder is all affected, its extreem pain and even pain right down my arm to my thumb.

I have tried everything and every specialist thats out there, you name it it iv'e tried it, physio only makes it worse, only accupunture gives tempory relief, but the good old strong magnets work every time.
might be worth a thought.:)

Nice to see everybody settling in here:cool: :D

Lanny
 

Was that a smirk on your face? :p Yes we are all settling in. At least some of us. Others are still missing and we aren't sure how to tell them about this one. I figure it would be taken off if we posted this address on the OBT. I feel sure that a lot of people didn't know about this one and are posting where they found people gathering again. I've bounced back and forth, but really like this one.

Now, where were we? Discussing muscle damage I think, I saw a massage therapist for what I thought was to be a one hour massage. That very experienced woman gave me a myofascial massage. She went over every muscle and joint in my body. I was there over two hours. Loved every bit of it. I am a little like Mrs. D. But I don't know why, it just happened. The muscles on my left thigh (outer and inner muscles) and back of the calf are in rigid spasm. I feel as if my leg is twisted. It's been this way for ages. It has just gotten worse. It started some time after knee replacement, I was left with a footdrop on that side. Only a slight one and I never have been able to move that knee like I should. That knee was the worse before the surgery. I can't lay that knee down flat on the table, the knee will not flatten.

I just finished having an MRI of my lumbar spine and sacroilliac joints. I haven't seen them yet. Also had a bone scan of my knee. The doctor suspects the artificial knee prosthetic may be loose and it is keeping the whole area inflammed. After the massage today, I could walk a little easier, but I'm reallllllly sore now. I see the doctor about those tests on Monday. Pray it's not loose. We can live with that, just badly, but can live. I'm planning to have these massages once a week. I know from past experince tha a good massage therapist can work wonders.

Mrs. D- I know I shoudn't take anti-inflammatories but the rheumatologist has me on Indomethecin twice a day for the arthritis. I'm also anemic. Have been for the last 2 months. The rheumatologist knows it and said he was going to wait until the next blood work and see what it shows. I didn't change anything except I stopped B12 today because of the bloodwork on Monday.

Wish I could see Alan's chiropractor too. Glenn ask him if he knows a good massage therapist specifically myofascial.

I've wandered all over the page and wrote a book. Take care all and good luck.
Love,
Billye

Glenntaj
 

Your post reminds me of something I'd been meaning to do---make an appt for acupuncture. Somehow I can get lost reading here for chunks of time and just forget what I needed to do in the real world.

My short update---(s/p laminectomy and fusion L3/4/5 in Feb)--I'd made gains with Feldenkrais but seemed to hit a plateau, so I went back to my old myofascial PT last week, and that helped get me some more movement in my back and hip. Then for some strange reason my shoulder hurt---and I didn't do anything that I know of to it. So, today I am seeing "alan's chiropractor", the famous Dr T, in the hope that he can help with the shoulder and get me some more movement/less pain in the back. My neurologist is saying I have a "failed back", which I take to mean basically that surgery hasn't worked. I'm not ready to give up the battle, and I do think there are small gains every few weeks.

It's so nice to see more people collecting here...Feels like home.

Wow...indomethacin....
 

This is a very dangerous drug... you could have a hidden, non-symptomatic
bleed from it.

http://www.rxlist.com/cgi/generic/indometh.htm

Most doctors are unaware of long term NSAID use and poor healing.
It is usually after the 4 week mark that this begins. Since this involves
cox-2 cytokines, and this concept is complex, it is not generally known.
(remember Vioxx? -- even with warnings, it was misunderstood).
example:
http://ajs.sagepub.com/cgi/content/abstract/29/6/801
and this:
http://www.springerlink.com/content/72w112h1mq218451/
I had a CE (continuing ed class) where this was brought up in relation to osteoarthritis treatment long term with NSAIDs.

People on long term NSAIDs should try and use a proton pump inhibitor daily.
There can be some protection afforded this way, but not 100%. Some studies show benefit in preventing GI bleeds.

Indomethacin is the highest bleeding causing NSAID in the whole family.

Mrs. D You Scared me!
 

O.K. now, you got my attention. I see the rheumatologist next week and will see about changing this or getting a proton pump inhibitor. I've experienced no stomach pain or any reason to think I need it, but you certainly got my attention.

Now that I have your attention. Do you know of any picture image sites for generic drugs? I've gotten one generic today that doesn't match the former pills and the pill image site I usually use doesn't show it. I just want to be sure they didn't send the wrong pill.

Billye