Describing Symptoms
 

As someone mentioned in another post, everyone describes their pain, numbness, etc., differently. Wouldn't it be wonderful if we as an MS community could get together with the medical community to put together some kind of descriptive catalog of symptoms?

I'm sure it would be difficult, but could it be done? Do you think it would be helpful? To doctors? To patients?

To demonstrate what I mean I'll try to describe numbness:

What is numb? Is it lack of ALL feeling? Not in my case, since I have numb areas where I can detect heat, cold, etc. But the general feeling in an area is different. As I am sure many of you can attest.

How deep is the numbness? In my case it is not superficial. I can feel a touch on the surface, but there is only a sense of pressure, if that makes sense. Like the numbness is not at the skin level, but deeper, more at the muscle (or nerve) level.

What do you think? Dumb idea?

I don't necessarily think it's a bad idea. Describing strange symptoms is difficult. Many of us describe them in a smiliar if not the same way.

At one of my neuro appointments I was trying to explain something and I ended up laughing. I told the NP that they must get get together and crack up at how us MSers explain symptoms. She laughed.

A hard concept to grasp is that sometimes it's what our brains are telling our conscience. My brother who has done extensive neurological research including MS, explained it to me this way - sometimes we think something is numb but in reality it is not; our brain is just telling us we are numb. Like when we tell the neuro that our hand is numb but when they do the pin prick test we feel it. Our brain is tricking us.

Or, which happens quite frequently to me, my brain is saying I don't have a left arm and hand yet it is functioning perfectly fine. The only time I find it annoying is while driving. I have to keep looking at it to make sure my left hand is on the steering wheel and is working.

Also, our nerves are terrible communicators. I once burned my arm - 2nd degree burn. The nerve behaved like a little kid who was told to put something in their room. Only the kid took that something and wandered around the house for a while, went outside to play, went to the bathroom, and finally (in my case) 45 minutes later put the something away in their room. It took 45 minutes for nerves to get to my brain with the message that I burnt myself.

It is hard to explain where the communication breakdown is happening. I guess that's the neuro's job. But it does help to hear how others describe some of their symptoms. Some of the common explanations could be put in a check list. LOL.

Every one has, at the very least, a different perception. Look what happens in eye-witness accounts. Most everyone will describe the scene or person differently, even though those differences are minute.
Trying to describe my numbness makes sense to me whereas it may present a problem to you.

OMG! I had an after thought.

You idea is good and I don't know how to explain this but . . .

I have seen over and over in many forums (not just MS) people who are seeking information. Now, this is a good thing but in the wrong hands, so to speak, it can be detrimental to both the patient and the doc. In this case, a "public" list would not be a good idea.

An example would be that if a MSer states that they constantly have cold feet. Someone "seeking" an illness and/or an "answer" may read that and think they really do have MS because they have cold feet too and that all the docs must be wrong. So, to them this is an MS symptom and they go to several neuro's even though cold feet may be a symptom of many, many other conditions. The reality could be that they don't have MS but a vascular condition.

We would all like to think that docs don't make mistakes but they too are human. However, it would be sad if someone got a wrong diagnosis because they presented themselves with all the symptoms they saw on the internet for that particular disease.

Why someone would want to choose MS is beyond me. Heck, if I had a choice there are other chronic conditions that I would chosen. Why subject myself to daily shots or even interferons that can damage my liver, a slew of medications, MRI's, IVSM, quarterly neuro appointments, a team of docs that don't always agree, etc. just because I wanted MS.

Sorry if that sounds negative but, I keep seeing some of this over and over on different sites.

Thank you tkrik. I said the same thing to my b/f, but couldn't figure out a way to word it so that it wouldn't come across as offensive. :cool:

When I first started visiting the forums, one of the ladies said out loud that "MS is a wanna' be disease". I found that accusation very repugnant :eek:. . . but the more I stayed on the forums, the more I realized there is some merit to this line of thinking.

I really don't think people WANT MS, they just want a dx of some sort to validate what they are experiencing. The mind can play wicked tricks on the body though, and the more some people learn, the more they seem to identify with our symptoms. This is especially true of MS, I think, because our symptoms are so broad and bizarre.

One of my closest MS friends won't even visit the MS forums because she says she ends up "imagining" all these symptoms, and then obsessing on them. :p

The other concern, as you've touched on, is that people can get so hung up on a MS dx that they don't focus on what the problem might really be. I know one lady, bless her, that has recently found out she has ALS, not MS. I've seen this type of situation happen over and over again, where people are too focused on their health problems being related to MS, and in fact it is something else entirely.

These specialists went to school a LONG time, and they know EXACTLY what to look for. In fact, it may be that they suspect that someone has MS too, but most of them are astute enough to know when is the right time to tell us, and/or when is NOT a good time either. (My doctor knew I preferred denial, and played that game until he just couldn't any more. :D)

Testing, TIME and PATIENCE usually expose the facts.

I agree that writing our symptoms out in detail probably isn't a particularly good idea. Those of us who have the MS don't often need any assurances that it is MS causing it, and if we aren't sure, we can ask specific questions to get that information.

Cherie

Thanks for the input. I do appreciate how gentle you were in wording your citicism of my idea.

While I agree, you certainly would attract individuals seeking.... attention... validation...diagnosis...whatever, by putting more specific symptom information out there, the information for the hypochondriacs and others is already all over the internet. You may have found it there--I know that's where I went for info.

With this being a little more detailed, though, I think you're right, it should be kept off the net. I think there is good reason much of the info provided on the net is non specific.

My idea was to help patients describe their symptoms to a doctor. Something along the lines of the pain scale, but more detailed. Genearlly we can describe pain fairly well: dull, sharp, burning. And we don't have much trouble indicating if an area feels cold or (weirdest of weird) wet. But some of the more vague symptoms of MS are much more difficult to describe and I was just grasping at ideas to improve that.

Catch - Coming up with analogies is difficult. Sometimes how one person words it is exactly how you feel. That is helpful.

I agree your idea is very helpful for the reasons you've indicated. Another reason is that a lot of times people (dx or undx) don't even suspect a symptom has anything what-so-ever to do with MS . . . but this misunderstanding could actually be detrimental to our care.

To this day, I still run into lightbulb/a-ha! moments when someone mentions something I've either ignored, been too embarrassed to ask about, or I had no idea was related to the MS. Thankfully, if things get too worrisome, I have a great doctor who humors my every whim. :D

I think the cons outweigh (though not out-number) the pros in going down this path of detailing symptoms though. :( As it is, I am usually quite careful about giving away TOO much information on the net (well at least in one thread/posting), as I am aware that people can:

- mistakingly take any advise/opinion as "absolute"
- draw a line from one thing to another and second-guess the professionals.

During my testing, I find it's funny that I often get "good" results on tests I was sure I failed miserably on, and "bad" on things I thought I was doing well on. Obviously what they are looking for is not always what we think it is. :rolleyes:

This MonSter almost always gets ugly at some point. :mad: I care just as much for helping the undx people get the right dx and treatment, but sometimes I think we do them a dis-service by encouraging them to challenge every MS leaf unturned.

I think you are right too, Catch, that the information that is out there is vague for a reason. I also agree with tkirk that our "lack of description" can also be a good indicator to doctors.

Touchy subject.

Cherie

What an interesting thread. I can see the pros and cons of doing this. Especially numbness, which seems to have a lot of different definitions.

For myself, I've come up with some interesting ways to describe some of my symptoms due to trying to get my hubby and I on the same page. We're big movie buffs, so a lot of them are tied into movies we've seen. Our most popular one is "Jack Sparrow" days. I feel as disoriented as the character looks. :D

My mom had MS, and I'm carrying on her practice of not assuming everything is MS related. Which is hard sometimes, but my background with medical professionals has taught me to assume nothing. :rolleyes: Very long story, but causes me to look for all probablities.

Fin - that's great. You were able to come up with analogies that work for you.

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.

It sounds as if you have come to accept things. That is not only a huge step but good for "healing" so to speak.

My parents had a good friend who spend a good portion of his adult life seeking and answer to an unknown neurological condition. No one could figure it out. He became physically disabled. He eventually passed away without any answers to what was causing all the neurological issues he was having. Very sad as he was such a kind and loving man as was his wife.