Lose forum?

[Flossie]

Just for a hoot I read the administrator announcement at the top of the page. The new guys want to eliminate forums which are not used often. Possibly lump the forums together with "similar" conditions.

Ack.

I am really glad there are not many new people being diagnosed with GBS/CIDP. But perhaps some of the "old" members could start posting again with helpful web sites or suggestions for dealing with symptoms.

I would hate to have newbies have to search through general peripheral neurologies to find specifc info on GBS/CIDP. Please reactivate this forum.

Happy New Year,
Flossie

[dahlek]

I'm one of those people on the 'cusp' of CIDP and PN...I post mostly under PN and on other boards. I've found that many 'pure' CIDP'ers [no offense intended here]" tend to discount a CIDP person who has primarily sensory issues. Yet I'm probably on more IVIG than they are, and my issues are truly diagnosed as auto-I. To put it simply, I am a frustrated, unhappy camper.

I've worked hard, read hard, researched LOTS about CIDP and it's variants. It is a 'secondary' immune deficiency from all I gather...That kind of 'lumps' you into the AIDS group. Again, no offense intended at ALL to the AIDS folks, but MY condition[s] evolved as an aftereffect from a long bout of pneumonia! I have to admit, that, I am grateful for all the research being done in the AIDS areas as it might, just might, provide a clue as to us who 'aquire' GBS or CIDP. That research these days is truly exciting! Neuropathy organizations don't seem to be advocates to the overall folks who decide where the FUNDING goes...maybe it's too esoteric?

I certainly hope, pray and more than WISH that prior posts lost from BT's crash in this quarter can be restored! It seems to be a 'rare' disease/disorder, but I SUSPECT that many more cases are happening that aren't being properly diagnosed! That aspect scares me to beyond FRUITCAKES!

Maybe You, I and others should just post any 'snippets' found on the issue, to keep the place active? I'll do some goodies I've posted under PN tomorrow.

Hugs, and super good thoughts! For the new year, well, gosh...it's just gotta get better! - j

[noong]

Well, Unfortunately Flossie, this forum has always been rather non active.

When I first came to BT, many, many years ago, this forum was pretty much the same as it is now.

You'd have no action for months on end and then Bam, A flourish, (generally short lived) and then all would go quiet.

I tried in the beginning to post and garner some interest when no-one else was posting.
I soon learnt though that talking to oneself is futile!;)

So every so often I come back and have a look.

If the forum is lost, well, so be it. Yes it's unfortunate but I'm not so sure I'd like to go back to being the only one to post, for the sake of having an inactive forum on the board.

Dahlek, I just like to say that never would I personally discount anyone that may be on the "cusp" of CIDP as you put it.
I find it frightening and saddening that you may have been treated this way by CIDP'ers.

Having been dx'ed for many years and having my own share of dramas, I understand your frustrations.

I remember when you first came to the boards and I think you should take great pride in all the help you've managed to give others, while struggling with your own non definitive dx.
You've done alot of research and it shows.

I may not post often. But I see everything! LOL:)



Noong

[Flossie]

Dahlek,

I am so sorry you have not found good support as you try to get a grip on your condition. I was "lucky" to have classic CIDP symptoms and receive a quick diagnosis. (Of course, you'll note I did not say I got lucky with the progression.)

Because I have not experienced the complications or frustrations of many of the people who post here, I do not reply very often.

Both the CIDP forums I participate on have lost years of information due to mechanical or malicious interference. This just makes it so much harder for the newly diagnosed or the undiagnosed to do research. I myself keep reposting the supplement letter because it is really important to me. But I have not reposted any of my other letters because the information is in the sites in my post in the Useful Web Sites in the GBS/CIDP sticky.

In any case, Dahlek, please know that you are in my prayers.
..................................................
Noong,

Sigh. I remember when this was a much more active forum.

But I also remember when I got a lot of information from the PN forum. So I guess it wouldn't be the end of the world if we got "lumped" in over there.

Perhaps we could make a point of including GBS/CIDP in our topic headings so that the newly diagnosed could search for information more efficiently.

Take care,
Flossie

[noong]

I think that's a great idea, if we lose the forum, Flossie.

Maybe we could also add a CIDP/GBS sticky, if we end up in the pn forum.

Just thinking...........



Noong

[dahlek]

I am certainly not one to create hate or discontent among any circles...other than those who shall remain un-named. Resources are wide and varied-the shoe that fits best is harder to find.

Noong & Flosie - ya know? What are our OPTIONS? If only living w/an undiagnosed neuro condition is bad...what do you do when you SIMPLY DO NOT FIT? I can say, well, feels soo good when I stop beating my head against the wall! I've gotten into insurances qualifying eligibility sites and well, yep, I am there, tho on the [very long] OFF label Lists... I like ever so many others, feel that: it's soo tenable...like walking on almost too thin/thick ice. One can fall thru any minute.

Would the analagy of being a 'storm tossed ship' be too out of whack? As in which part of the SEA are you IN so we KNOW who should RESCUE you? DUH?

Umm, do you gather a bit of frustration percolating here?
Yes! I have treatment, but I really shouldn't have had to go thru the diagnostic process in over 14 months! I really should have taken, with a competent doc less than one year- We should not have to ENDURE this all! is all.

Flossie, noong dear persons...I'll send you goodies that could well, fill the mind? I've heaps of them. and more?

Hugs and super thoughts for many, many pain free moments to hours in the near future! - j

[blossom4th]

Dahlak,
I can feel your frustration;hope it gets better.I've been searching for some kind of a diagnosis for 6 yrs;two of my sisters have been searching for 10 yrs.
Autoimmune illnesses can be as variable as flowers and the weather,so no one should be classified or treated differently just because their illness is a bit different from others.
I like this forum,I really hope it will flourish.Each individual has to talk over their treatment with their Dr and decide what's best for them. It's not a battle to be won or fought on the forums,like some individuals seem to feel.
There's nothing wrong with discussion of treatments;I like to be an informed person. Best wishes to all of you! :)

[Coyote]

I just came off the Dystonia forum and don't see alot of action there. But when I looked for CIPD I missed it altogether because it says Guillian Barr first.. and not under the C's. Under peripheral neuropathy I would have thought to see it.

Some are not active much...as Sjogrens I think is there. Some people must not know.... but how some things are listed maybe important as it can be overlooked.

Hang in there Blossom. Your day is coming.

[blossom4th]

Thanks Kewanee,
Need the cheer and faithful assurances! I'm trying to hang in there....though these days,I think I'm doing more laying around!:rolleyes: