This is an interesting thread Catch. I too have thought about doing something like this, but then on thinking about it more decided it hasn't been done, cause it isn't practical...

1 - Tkrik touched on the fact that anyone could take the list and say they have all the invisible sx....and yes they would....and unfortunately that would affect us all they way to SS office....

2- From reading people's experiences this past year, I believe that different symptoms present themselves differently....such as numbness.... I myself have experienced numbness in my face to different degrees....

3- Personally I don't want to see an all inclusive lists of sx....No I didn't know sidestepping was a sx and it got a lot worse, and no I didn't know I could have a cold arm to where it hurt. And no I didn't know my bladder could stop working. But hello that is what my doc is for! I call and say hey, I can't pee...is that MS or something else? What do I do???

4- I think we should describe the things to the best of our abilities...we might say something (especially the limbolanders) that might indicate a different medical phenomenon is going on. Where is if we had a "standard" talk, they wouldn't say and the doctor would miss an important piece of information.

No matter how I look at it, I don't see the point of doing this. I disappointed myself when I did this!! But keep on thinking and talking to us!

Someone asked me why I don't vent here! I have to laugh at this! I don't vent I write novels in philosophical ways!!! LOL

Catch, thanks for your thread!

Catch,

I have been bouncing around the boards tonight and I thought I'd send you a PM, then I thought just put it on the post!

I don't know you, haven't had a chance to get to know you and I don't want you to think we don't want your ideas...

I hope I didn't sound like a repetitive nah sayer here, I didn't mean to and I hope you didn't think I was. I personally know one of these ladies and know that she didn't mean anything like that either. And the other lady, I have admired her posts for a while now.

Peace.

This is a really interesting thread to me.

I have been diagnosed CIS (Clinically Isolated Syndrome) because I show every sign of MS but have had only one band in spinal fluid out of seven LP's which is not enough for a definite diagnosis.

I have spent about 10 years, lots of repeated tests, several neuros, a closet full of MRI films (five brain lesions), and money spent on co-pays seeking a diagnosis.

I understand those in "limbo" because they just want an answer. I was at the point of obsession and going to different web sites...yep I got that and that so it has to be this!!

Okay; it's MS; no wait it's more like ALS!!!

Finally I asked my Neuro; am I ever going to get an answer to what this is and she said "some people have all the symptoms of a disease but can't be diagnosed as definite". That is when she said I had CIS.

I have my answer; no more tests, no meds and I see the Neuro in a year.

I've seen the initials ALS many times on this site, but I don't know what they stand for. Could some-one please explain? :rolleyes:

I also have to agree with the others who have said that posting a list of descriptive symptoms is not a good idea.

One of my own fears is that we are mostly all MSers here; we are not consulting doctors and if undiagnosed people were to take our lists to the doctor because our symptoms sound like their symptoms, it's possible that nastier things may be overlooked.

There would be other causes for concern, but just that one alone is worthy of a mention.

ALS is also known as Lou Gehrig's disease. There is a forum on here for people with it:

http://neurotalk.psychcentral.com/forum6.html

It's a very unpleasant neurodegenerative disease, worse then MS:

http://en.wikipedia.org/wiki/Amyotro...eral_sclerosis

This lady, who was on another MS forum, would often come on with "similar" symptoms to what we have, but she never really nailed them. We would respond according to our interpretation of MS, which wouldn't ever really answer her questions.

She knew she was sick, and had her mind made up that it was likely MS because everything seemed so similar. This went on for a few years, and it was hard on her and everyone else who were sincerely trying to help her. All of us were very upset to learn it was ALS. :(

Cherie

Thanks for that link Cherie. That is so sad, but it depicts exactly what I was talking about. We have many people here in Limbo, and a good many more lurkers. I do not want to detract in any way from anybody who remains undiagnosed and that person's symptoms, and I really do hope that most people do not end up with the MS diagnosis (or anything worse).....but.....at the same time, I could well imagine people associating with a list of descriptive symptoms from any site, and that could sure muddy the waters for a doctor trying his or her hardest to find a correct diagnosis.

Please ..... Limbo Landers....no offence intended.

This is exactly my concern with such a list. DBF's step-dad has ALS. While we have similar symptoms we have entirely different diseases. Mine is only chronic, his is terminal.

Additionally, brain tumors can cause symptoms similar to MS. My brother recently passed away due to a brain tumor and it amazed me the similarities.

I was on Montel's Spotlight Health a number of years ago, and many of us stay in contact because we set up a private MS board when Montel's folded. To this day, all of the limbolanders that were part of our group, STILL do not have a MS-dx. There are various dx's that each of them has gotten along the way, and others still don't have a complete answer. Some of them are much sicker then I've ever been.

We share many simularities with other diseases/conditions, which is the also the reason that people might continue down the path of a seeking a MS-dx. There are usually identifiable differences too though . . . but some people just do not want to hear about those differences, perhaps because they are scared of what's happening to them and grasping at straws.

As I've said before, if a person has gone through the testing for MS, then gotten a second opinion. . . it is not in their best interests to "dwell" on our symptoms list by trying to identify with everything we have. It doesn't mean there isn't a slight chance that it will end up being MS, but there are lots of other things to explore, and TIME will usually tell if it is MS anyway. Unfortunately, there isn't much that can be done to speed up the dx process though, except to WAIT and see what shakes out in the longer run. :mad: :rolleyes:

Cherie

Thanks
 

Thanks for your input. I certainly took no offense at any of the comments. Since I am totally new at this MS stuff, that's why I'm posting here; to try to learn more. I tend to come up with these grand ideas which when really looked at, are not practical for a variety of reasons. This is apparently one of those. I'm glad I have all of you experienced MSers to guide me. It sort of makes me feel young again, not knowing things--so thanks especially for that!:hug:

Catch - I am so glad that you did not take offense. I still think the idea itself was good. I just think some of the cons outweigh the pros.

Also know that we are here to help you in any way. If you have a questions about a symptom or anything we are here to help. There is always someone who can relate to what you are going through.