Post all new forum requests here
 

I started a new sticky thread to post all new forum requests here...

If you've made a request and it hasn't been implemented yet, please remind me here.

Forum requests can take up to a week to implement.

Thanks!
John

I think in the changing world a complementary/integrated medicine forum might be appreciated.
Val (UK)

Myasthenia Gravis, LEMS and CMS
 

Hi, John. I'm afraid I wasn't clear enough when I made my forum request, sorry.

MG, LEMS and CMS all effect the transmission of acetylcholine at the neuromuscular junction. I would really like to see them listed in ONE category instead of three separate categories. There are people who are still undiagnosed who would benefit from having info and communication from people with all three of those diseases.

Is it possible to list them (as above) in one topic category? They are all "cousin" diseases and some treatments are the same. The symptoms are basically similar as well (weakness when you do things, better when you rest and with drugs - except that LEMS and CMS can be a bit different).

Thank you for having this forum and trying to meet our needs. I really appreciate it.

Raechel

John

I was wondering about a sub-forum for Normal Pressure Hydrocephalus...

John,
I was wondering if we could have a Brain Tumor/Cancer forum and a Traumatic Brain Injury forum?

Thanks for all of your hard work. Will there always be BT1 and BT2? Dodi

I can assure you that BT2 is here to stay...
Doc has stated he will keep our site up and running


hugs

Doc John,

Never mind, you already took care of it! Wow, I'm going to have to REALLY pay close attention around here, seems all we have to do is ask and "POOF", there it is.....I'm so not used to this! Now how do I get my kids to listen and respond like this? LOL!

Thanks for this lovely new home, I'm veryhappy here!

beth :)

Bipolar Disorder - Children
 

Dear Doc John ...

Could you please create a "Bipolar Disorder - Children" forum. Parents with bipolar children are challenged in managing their children's illness. Such parents need an exceptional level of emotional support and being able to easily find one another is the first step.

Theresa

In your opinion, should this be a sub-forum of the Bipolar forum? Or it's own forum? Just curious :)

new forum
 

Could you add a domestic abuse forum? I have seen a great many good things come from the help that can be offered to both male and female victims of domestic abuse. If it is out there they will often check in while checking the website out and so much help can be offered to people through this type of site. It can offer them a forum, advice, options and a listening ear. You have no idea how important those things can be for the abused who feel trapped. They can find out that they have options and friends who understand and that can mean the world to so many. It could verywell save their lives.

Just my opinion.
Regards
Mister

Hi, Wittesea.

I want to see it as its own forum, not a sub-forum.

This is mainly because it was never seen, at the old place, from the topic list pages. It was hidden. It could only be found if someone already knew or suspected their child as bipolar.

I see it as being sensible to have sub-forums under Diabetes, for instance, if that particular forum desires it...

But with "Bipolar Children" or "Bipolar Disorder in Children" being its own forum, it would stand out to parents here on a child's or family's behalf. Bipolar in children is not as easy to diagnose as many of the illnesses and disorders are. Since it is a chiefly behavior-distinguished disorder, a bipolar child is often seen as bad, oppositionally defiant, a behavioral problem, a bad child or, sometimes, as having a totally different psychiatric illness.

My point of view is that with a visible forum, Bipolar Disorder in children will become more widely recognized and understood. I know that many parents will drop in to see what bipolar in kids is all about.... and those parents may very well be the link, someday, that some other parent desperately needs.

Theresa

Could we please have a Chronic Fatigue Immune Deficiency Syndrome forum? The illnesses known as CFS/CFIDS.


and I second mister's suggestion for a Domestic Abuse forum. Great addition to Health & Related topics.

and I second dyslimbic's suggestion for a Personality Disorder forum, too.

Personality disorder forum
 

Would it be possible to have a personality disorder forum?

a sub forum is a good idea...
 

I started this idea at OBT... and we waited many months for JL to get around to making it. In the meantime...I had 2 stickeys put up, one in Bipolar, and one at ADHD. And when we did get that subforum granted, it did become
busy. However, I disagree that it was "invisible"... as subforums do show up in the forum list..as such.

My major concern with the Children with Bipolar issue was that since the Bipolar forum was so busy with adults, that newly targeted families with this new diagnosis, could be lost in the shuffle.

Here, I would think that a separate forum might be a better idea. But listing it in the forums list... should place it near the Bipolar forum.
Children with Bipolar would be in the C's, and too far away from the Bipolar fourm which is in the B's. Perhaps Bipolar Disorder (Children) would do the trick?

It would be nice to continue the information and support that was commonly accepted at OBT...here.

This is a good idea. Thanks for considering this idea, DocJohn.

Whether the forum would be on it's own or a sub-forum would be totally up to DocJohn, I was just asking the question from my own curiousity.

I do agree that the subforum on the other site was hard to find and hard to see.

But, just so that everyone is aware, sub-forums here can be seen from the topic list pages.

To see an example, go to the topic list and scroll down to Cancer, and you can view how the breast cancer and prostate cancer sub-forums can be viewed from the main list, and you can click on the breast cancer sub-forum to enter it directly without ever entering the cancer forum.

Service & Support Animals - subtopic under "Our Pets"
 

I hope I'm not hogging this thread ... BUT I just spent several hours this evening researching Emotional Support Animals and how they are covered under Federal regulations, and how they differ from Service Animals.. And what provisions can be invoked and what documentation is needed for dealing with "no-pet" rental properties. Also found a great deal more information I would love to post, including links.

What I would ask you to consider is a sub-forum under "Our Pets" since both Service Animals and Support Animals are our pets, too, when they live with us and love us. It seems it would best be called "Service & Support Animals".

Thank you for considering this.

Theresa

I too would like to see a forum for brain tumors or meningioma's also a forum for MGUS (monoclonal gammopathy of undetermined significance). Thank you so much for all your time!

Ang

Hey Ang ..
I agree that we need a Neurological Cancers & Tumors
with these sub-forums:
* Brain Tumors,
* Spinal Cord Tumors and
* Cancers of the Linings (like Meningiomas

Theresa

Tons of Thanks & More Thinking on Things
 

Doc, thank you VERY much for the Parents of Bipolar Children.. AND CFIDS.

I was so surprised to hear that subforums show up on the topic index page...
Then I realized WHY I never noticed them at OBT.
I never USED that page (unless I couldn't avoid it) for there were SO many topics (dozens) that it took a lot of time to scroll thu them all. My mind got numb and fuzzy everytime. It made me dizzy. My head almost hurt.

So what I did was subscribe to all the forum I did want to browse every so often, and accessed them all on my UserCP page!!! One stop shopping for me.

So thanks very much! And recognizing what MrsD and others pointed out to me, I want to urge you to use sub-forums whenever possible. I dread the forum topic list getting too long!

And I looked over the current major divisions and notice the name of the seond one Health & Related Topics ... and, looking over the topics, realized that Service & Support Dogs/Animals would probably go there best, not under general. So ignore what I said earlier. Wrong place to consider placing it.

Thanks again.
Theresa

Thanks to MrsD for requesting the great name change for what was once "Vitamin and Mineral Deficiencies" -- and is now "Vitamins, Nutritients, Herbs and Supplements". Tip of the hat to DocJohn too, of course. Truly 1-Stop shopping for all our questions. :)

Rose is a great Vitamin E resource person, and MrsD is a licensed pharmacist and long-time investigator/speaker for non-pharmaceutical approaches to patient care. I know there will soon be others who have special knowledge to share. - Theresa

John, I think my request was missed - either that or you are very busy! ;)

Would you please put Congenital Myasthenic Syndromes and LEMS in the SAME category as Myasthenia Gravis? We all have similar issues and could use the support in one place.

Thank you.

Raechel
(CMS)

Would you please make a forum for Arthiritis Osteo/Rheumatoid as one category?

Could you also make a category for Dercum's Disease, and Madelung's Disease?

These are rare diseases, but I will announce at another board that they are listed here. I think when rare diseases are given more of a presence on the Internet medical researchers and physicians are more assertive in finding a way to help with dealing with these diseases, instead of just saying they are rare and ignoring it. I think too it gives others that may suffer in silence with these diseases, the opportunity to search the Internet and find others with the same symptoms and know they are not alone.

This has happened with Dercum's Disease and Familial Multiple Lipomatosis. A female physician at University of California is now researching and mapping these diseases.

an new point of view on an abuse forum
 

Quote:
Hi, Mister. Higher on the page, I gave a thumbs up to your idea .. but after I posted, I remembered and continued to think on how on Bipolar, discussions about our illnesses getting worse, the pressures our illness puts on our families, our job searches and firings, our spouses' being laid off, having to move to cheaper digs, our ill or disabled kids, our marriages and relationships in some sort of trouble. None of us would have even briefly considered going to a specific forum. We needed our friends, we needed those who understood the illnesses we suffered from, what our past history here.

And none of us would have considered cutting them off as off-topic, telling them to take this issue somewhere elsewhere. (tho I understand that not every forum, no matter how busy, will necessarily develop such a closely knit supportive and understanding family as you see at BP).

Another valid point, a lot of people, no matter how well educated, will recognize themselves as abused, or they may be in strong denial, see themselves as causing their own problems, or simply be too embarrassed to talk about these things in a totally open forum. And this includes men and women.

And, as another point to look at, I do know that many of specialty forums have ended up very quiet forums with little activity -- certainly not enough to ever develop its own supportive on-going community.

But MAYBE if there was a forum called Our Families in Crisis or something like that might more readily attract more users who CAN become a supportive community. And we have to remember that domestic abuse never occurs in isolation and I've mentioned many of those correllaries above.

Thoughts and feedback regarding this idea? A more encompassing concept?

Just thinking ...
Theresa

I'd like a Weight Gain Support area. I sure could use some tips atleast. I need around 20lbs or more (incase I lose again!). Not sure how common it is, I can't find local help since being skinny is a trend, they look at me like a weirdo if I say I want to GAIN weight.

:(

Ellie -

Great idea!!! I also need to GAIN about 20 pounds, and anytime I mention it to anyone they think I'm nuts. My doctor ans my husband and the only people who understand, the rest of the world doesn't understand the concept of needing to gain weight.

What if "Weight Loss Support" was changed to "Weight Support" or something like that ("healthy weight support" maybe?) so that those who need to drop weight can get support, and those that need to gain weight can also get support.

I would love to see a sub-forum of the "Health News Headlines" forum called "Health News Headlines Discussion".

Because there are so many threads in HNH and because they come in rather quickly, any replies to the threads themselves are quiclkly buried as new headlines come in.

That makes it hard to have discussions about things because of the sheer number of new threads that arrive in that forum on a daily basis and push the old threads to the bottom of the page or onto the next page.

So a sub-forum would allow members to be able to discuss the news items without having thier discussion buried by the incoming new threads/headlines.

DocJohn ... May I add to the list of requests? This is not a new forum, but another name second name now being used for CFIDS.
-- it is Myalgic Encephalomyelitis.
If you could add that to the area that describes the forum, it will help more people find us. - Thank you very much. -Theresa

- OneMoreTime

Eating disorders forum
 

Just noticed there isn't one.
Wanted somewhere to post about 'Thin-the documentary.'

''Thin is a photo essay and award-winning documentary by photographer Lauren Greenfield that charts the lives of patients at the Renfrew Center, a residential centre for the treatment of women with eating disorders.

Although the photo essay is available online, the full documentary is not. However, an extended preview of the documentary is available which is quite moving even in its abbreviated form, showing the emotional turmoil experienced by young women with anorexia and bulimia.''



http://www.mindhacks.com/blog/2006/1...documenta.html

Doc John,

I have a request as well. I would like to see Occipital Neuralgia added as well as Cervicogenic Headache. I realize they can go hand in hand somewhat. Since I suffered from this and still do from time to time, it is amazing how many people have asked me about these conditions. Thank you.

is it possible to add a forum for Ataxia/Spinocerebellar Ataxia?

I know these weren't very active at BT, yet would like to see a growing support network here. hard to know where to fit in although so many neuro issues have symptoms of ataxia dealing with a progressive degenerative ataxia be nice to build a support network more specific to this too here at neurotalk.

Or if there is a group here that already fits this 'disease" just point me in that direction.

thanks

How about a place to help us learn...
 

not to advocate per se, but to interact with advocacy organizations [some of whom aren't' usually responsive to 'constituencies' or non-members on HOW WE CAN ADVOCATE our own issues effectively. Be it in the immediate-doc to patient, anciliary staff to patient, patients to community, patients to drug and insurance resources, and patients to state and national representatives.

Sort of maybe, a guest 'speaker' kind of thing? Examples could be'Week one-q&a w/real docs on how to better answer questions they ask? how to know what questions WE should ask, when to be an agressive self-advocate and how to be effective doing so?
On the community, state and national levels -what reps see and hear, and what they would like to hear and are there more impressive formats for us to press our cases?
Well, you get the idea. We all represent many individual and group needs, by condition, but, there are also broader areas we can and should speak up in. We, I believe just need to know the key hows... Most of us are smart enough to go in the right directions. The right way to do it best makes all happier.
I'm not talking pure political here, but so many of us are dependent on subsidy either thru the governments or insurances, that we, being an expensive minority are especially, life threateningly, vulnerable.

Thanks! - j

Forum for Rheumatoid and Osteo Arthritis
 

Is it possible to add a board for Arthritis, Rheumatoid and Osteo, together on one forum?

Thank you! Doc John!

Newcomer's Forum??
 

I just noticed that we don't have a "Newcomer's Forum". Someplace where newcomer's can get guidance and direction about where to post.

It should be located at the very top of the forum lists under "General" section.

At OBT, they called it "New Visitors Click Here!"

We should, of course, pick something different, but it should indicate that it's sort of a front door to the building so people who need guidance can get it.

We should all take turns monitoring messages in that particular forum to welcome new people here.

Barb

Regarding Autism Placement
 

I would ask that Autism be repositioned to Mental Health

1) Diagnosed and treated by psychiatrists, not neurologists
2) Meds, alone or in cocktails, are same as drugs used to treat bipolars & (some) ADHDs and the more serious childhood self-control disorders
3) on OBT, tremendous overlap in parents on these various forums
4) much research considers it more than possible that Autism-Aspergers-ADD/ADHD may exist on a continuum
5) much comorbidity among these various disorders

Thank you very much.
Teri

a private forum for necessary outpourings of grief and rage
 

Dear John (and a hello to Kimmie) ...

I would like to request, please, a forum somewhat like the one Tim described sometime back - a place for venting here, yet a place it would be private and non-disruptive to the normal operating of NT.

OBT has a mod-member dialogue place that I -think- works like this. A member contacts the mods and requests entry to this private forum. They have access to only ONE thread where they can dialogue with mods and reach understandings regarding their questions and confusions.

What I am envisioning would USE this v-bulletin software possibility, but it would be primarily for venting. Like right now, my sister died a week ago, but because of extreme abuse from my family (and my sounding board being away from home for who knows how long), I am in a terrible state of mind where I desperately need to pour out all this. Stuff for which it would be inappropriate to post to any of the forums here - not even grieving & dying. In fact, it would be too emotionally distressing for it to be there.

I figure that if a particular person felt the need for the sense that someone is reading it, we might be able to invite a person or to ask Kimmie for someone to give us a word of support perhaps.

So many of us, the chronically ill and disabled, or the caretakers of the chronically ill and disabled, are lacking anyone in our home or extended environments who we can take these things too. Medicaid does not provide for psychologists or such in the this state. 15-min med checks is it.

I have tried and tried to use blogs - even making those blogs private - but I can't do it. I just feel both too exposed and then, at the same times, too isolated and alone.

I hope you might consider this. You could plunk it down in the mental health section. Sometimes we just need to scream and rage and cry.

Thank you for considering my request.
Teri

adding Myalgic Encephalomyelitis to CFIDS subforum descriptor
 

in reference to CFIDS (338,000 Google hits)
http://neurotalk.psychcentral.com/forumdisplay.php?f=81

Would ask if you could please add the other name rapidly gaining recognition and general acceptance

Myalgic Encephalomyelitis (already 234,000 Google hits)
http://neurotalk.psychcentral.com/showthread.php?t=3856

If you read here - http://uk.geocities.com/me_not_cfs/, you will see how the CDC created CFS to simply group a bunch of symptoms that came to be an umbrella term for a great number of syndromes and illnesses. ONLY Myalgic Encephalomyelitis refers to the neurological illness that concerns the focus of this website.

Thank you for making this sub-forum more recognizable and identifiable, as well as promoting the use of the current correct medical terminology.

Perhaps CFS/CFIDS needs to be subordinate to Myalgic Encephalomyelitis, rather than the other way around?

Thanks...
Teri

1. A Google Scholar search shows
2. 978 citations for CFIDS and only 29 for CFS,
3. 1280 citations for Myalgic Encephalomyelistis.
   
   The need for inclusion of the medical term clear.

Thanks tons, John !!!

about SUBFORUM LOCATIONS (and subforum requests)
 

I think a forum for questions and concerns and such for dealing with Insurance companies, doctors offices and staff, billing, legal, and the other financial issues of having medical and health conditions would be of help for all of us.

possibly a title of-

Medical Billing and Related topics
dealing with doctors office, bills, accounting, collections, etc

a second on Jo's request
 

Jo, I agree that a forum like this could be as important as the Workman's Comp & Social Security sections, a natural for the same area.

I would suggest
Dealing with Medical Beaurocracy
- your records, insurance, billings & more...

Covering how to talk to your insurance company, hospital billing departments, doctors. Advocating for you child or parent. How your pharmacist can hep you. Your legal rights.

These are issues that are regularly dealt with and we had a particularly good (and unique) collection of help on bipolar at OBT (if it ever gets reloaded) that I would happily import over here.

- Teri