What word do you use to describe the 'numbness'?
 

I can't really call it numb because I can still feel my foot and it is fully functional but it's tingly and, well it feels like it's numb but with feeling. Am I making any sense. You can sure tell this nurse has lost a lot of her knowledge. My pain in my leg is almost gone but the numbness in my other leg isn't.

I took my Mom to the doctor yesterday. Their checkout system really needs to be revamped. It takes a lot of standing to make all the appointments. Then you have to go to Wendy's for lunch, stand in line there, and then take her home. She lives in a retirement home so there are a lot of ramps to accommodate the power scooters. So my foot was pretty beat when I got home. There also is a band around the fourth toe on the right foot. If it were just the pain in my left leg, I would cancel my appointment since the pain is almost gone. But I think I'll keep it due to the other leg. But I don't know what term to use about the leg.

Hi Dodie,

I like this site best for describing our symptoms (as well as for researching other issues related to MS):

http://www.mult-sclerosis.org/mssymptoms.html

Cherie

Numb
 

It is a sensation of numbness...without actually being numb.

I think I found the best description on lady express site. Parasethesia-partial numbness. Being a former RN of about 30 years, I still like to use the correct medical terminology!

Doydie:

It's like trying to describe neuropathy - itchy, burning, numb, tingly and painful all at once.

The McGill pain chart was quite helpful since it covers sensory, affective and evaluative.

Having your ducks in a row when it comes to being a patient isn't always as easy as it seems when you are a health care professional. :)

Hope the paresthesia/partial numbness gets better soon.

All the best

My numbness is: I cannot feel vibration with my eyes closed when my neurologist tests me for numbness.
I have it on my right side, in patches, from hip to the end of my toes. I have it on my left side from my knee down. Again, in patches.
Mine never goes away and it is caused by a peripheral neuropathy, although treated, cannot be reversed.
I have tingling in my right side from the top of my head down to the numb patches. But, only on my right side, not on my left. :)

When I've had numbness in my hands, it's kind of like wearing a rubber glove...or several rubber gloves. Tight ones.

Numbness in my feet or legs is kind of like wearing very tight stockings, or maybe sometimes like wearing a wetsuit. I can feel the sensations of something touching me, but just cant quite feel everything.

Sometimes it feels like I'm wearing boots that are too small for me, that have sheepskin lining in them. Not exactly a disturbing sensation, but it gets annoying at times.

I just call it "half-numb"! :)

I don't think neurologists or other doctors expect (or even want) patients to come in using "proper" terminology. They want you to DESCRIBE your symptoms the way they feel to you. There is no "right" or "correct" way to describe them. You serve yourself best if you don't try to shoehorn your symptoms into terminology you've learned, but rather to describe them in everyday terms.

Take care, doydie! :) :)

Nancy T.

Yes, Numb with feeling is a good way to discribe mine, as well. Thanks.:)

Originally posted some feelings that I thought were vague enough, but had defeated the purpose of a prior thread.

Cherie

Sorry if I'm being a stick in the mud....but didn't we decide on another thread not to do this?

Why? Just out of curiousity

Yep, you're right Koala. I meant to approach it differently in my answer . . . but the point is probably the same.

I have removed my posting and thanks.

Cherie

We discussed fully it on the thread "Describe your Symptoms" (or something similar) recently, and it was decided that we should not list our symptoms out in this particular manner.

My original answer on this thread described sensations, but WHERE and TIMING was not layed out. In retrospect, Koala is right, and it was still too detailed.

Thanks for questioning that Koala . . . had a blond moment.

Cherie

wow my first answer to this question was totally off key
i was gonna say its

annoying

I must have missed that thread...I didnt see any harm in trying to describe a symptom.

Here's the thread I meant Erin542.

Have a look and make up your own mind.

http://neurotalk.psychcentral.com/thread39582.html

I think people are always going to describe their symptoms on forums such as these, either out of curiosity as to whether other people get it, or out of concern for what might be causing it, or simply to share the latest weirdness or problem.

Anyone with a tendency to "get" symptoms from the Internet or to interpret their symptoms as belonging to a particular disease is going to do it anyway. So many descriptions and attributions of symptoms can be found all over the Internet--there's no stopping the tide.

I don't think that withholding descriptions of symptoms will save anyone from themselves. There's too much out there already. We can't be responsible for how people might use our posts.

My opinion--YMMV! (Your mileage may vary.) :)

Nancy T.

I see your point too, Nancy.

I have been (or am) on several forums and each has it's own feel. Some forums literally chew up & spit out most new members. Other forums seem to exist for the sheer numbers, and/or almost capitalize on the vulnerabilities of new people, regardless of their dx (or lack thereof).

This forum has grown so much in the past few months, so I think it is still taking shape. Until it finds it's niche, there are likely to be interim decisions that don't necessarily pan out exactly the same way in the longer run.

Cherie

I came to this late, Cherie and Koala. I went back and read Catch's thread and am now up to speed. I do agree that we should not make a formal list of symptoms here for the perusal of lurkers and wannabes, but I think you might be overreacting to this particular thread.

We will always want to talk to each other and compare notes, so to speak, and we don't want to discourage that. It's too much a part of the support we give each other here.

This forum has a pretty nice "free speech" policy, as long as it does not offend, and we don't want to become too restrictive, as other forums, where we have run screaming from, have become.:D

So lets cool it a little OK..:grouphug:

Yep, agree with you on all that too, Sally.

It was likely the way I wrote my original reply which motivated Koala to question it . . . and I saw her point.

Cherie

well said Sally i agree, loosen up, another site tried it and if I am not mistaken most of those folks are here now. when a lot of us have cog fog and cant remember last nights dinner, its easy to see how some of us differ in how we describe things, its how they are perceived by that INDIVIUAL, we are all different and the illness hits us all differently as do the meds and treatments and our descriptions



peace

Numb with feeling is exactly what I'd call it too.

I'm a bit taken back on this, and the other thread. It's kind of like being on the playground and not being with the popular crowd...not allowed to play in the sand box.

How many had a dx right away?

How many did it take years?

To assume that those in limbo are 'wanna be's' is outragouse, at least to me. I wanna be nothing! I didn't ASK for ANY of this!

Don't think for a minute that those of you who don't want limbo'ers here....DON'T NOTICE. WE NOTICE. There is a handful here who are not 'prejudice' and for them I'm grateful. It angers me! I'm a part of this forum...supporting, hugging, understanding.....trying to be a support when I can, and then to talk about me and others here as if we are wanna be's is hurtful and mean. Some of the arrogance of it all just makes me :eek:

Maybe I've over stayed my welcome here.

BTW: I call it numbers!

PS: I've NEVER gotten a sx because I read it here...or anywhere! EVER!

GJ, I hope my post didn't lead you to believe, in any way, that I consider Limbolanders as wannabes. It never entered my mind. I personally, consider all LLs as PwMS, or, if not MS, then another similar illness.

I dont buy, for one second, that yours and other's symptoms are caused by stress. :rolleyes: I do believe that stress does bring on MS symptoms, though. I think that, one day, most of you will be DX with MS or a Similar disease.

I think if there are those here who do not accept LLs as part of our supportive, loving Family, should go back from where they came.:( I don't really think that is what was meant, though, greenjeans. It may have just looked that way to you.:confused:

Anyway, if there is any doubt in your mind, you are as welcome here as the flowers in May. I always look forward to your supportive and fun posts. Keep em coming.:hug:

Thank you!
This is REALLY hard for us in limbo that don't want it to be MS but all (or most) of the SX are point that way. I even have Dr.'s and others that have MS (that know me in person) that say it sure seams like MS to them also.

We come here to find support derring this hard time and some time get jumped on how something doesn't look like MS to those that have a DX but than turn around and say that they have THE SAME THING a week later to someone else on the board that has a DX.

And to agree with Greenjeans last line, "PS: I've NEVER gotten a sx because I read it here...or anywhere! EVER!", sometime we don't know that a SX is a MS SX until we see others talking about it, we see those with a DX do the same thing. "I thought I was the only one that had that", "I didn't know that was from MS". Ring a bell.

Bottom line, do jump on the UN-DX so fast. There maybe some here that DO want MS and I feel very sorry for them. But I don't think you can tell just by there post if they are a Want-to be" or a limboer that feels it must be MS because nothing else adds up as well as MS.

There are times I walk away from the board in tears and ask my self why I keep coming back. And my answer is "Because I can't even find a good Dr. that will listen to me".

If there are any typos, I'm sorry, I'm too upset to reread my post to see if everything sounds right. I'm not here to prove I'm NOT a wanna have MSer. I'm here to find the support I need until I do find out what I have. And I have SO much history that I haven't posted on the board so just because I haven't posted it doesn't mean I have tried it, had it, gotten over it, or even never had it, never tried it, etc. Someone said in another post to me that I should try Lyrica or Neurontin, well I have tried both. I didn't wake up last month thinking "I want to have MS". I have been dealing with odd things for at least 14 years and the past 4 years it sure seamed like there more than Fibro going on inside of me.

What I just said to GJ, goes for you too, Mom. You are part of our Family..:hug:

Oh and if I were to "pick" an illness to have it wouldn't be MS. I'm scared of needles and don't know if I would every be able to give my self the shots to my self. And who would want lesions on there brain and maybe even there spine?
If I were to "pick" it would be something like CFS, oh wait I have sometime very close to that all ready, why would I want something else???? :confused:

Thank you Sally,
If I read anything out of context, it may be because I didn't sleep last night...totally a low back pain thing :o (I'll review later)

When I see someone talk about wannabe's...I get that there may be some who are hypochondrics in this world...but I know I'm not one of them. Having MS is a bad thing...but those who have a dx are lucky. They have their answers and they have doctors who are addressing there sx or trying to stop the progression with meds.

Those like me have nothing but confusion, questions and fear of being labeled as a 'wannabe'. Fear of saying ANYTHING that may be construed as imaginary. I come here for comfort, but in most cases I hang in the 'fun' threads....I don't want to complain about anything....unless I'm currently experiencing it. I feel lucky that right now I'm feeling pretty normal. Maybe that will be the case for the rest of my life, or maybe the sx will come back again. Wait and see is not easy or fun :(

I enjoy being a part of this community. I like the people here...I followed here with y'all!! :D

Thanks for the kind words....It does mean alot to me :hug:

The thread about whether to list symptoms was intended for “anyone searching around for a dx on the net”, which is why I did not think anything of listing my numbness sensations here, on a separate thread specifically about that symptom.

The part where Koala was right was that if someone was searching the net for “numbness”, they may very well have run into that posting. In effect, I was doing what was decided was not a good idea.

This is not personal.

Cherie

I see. I missed the meaning then. If I'm like anyone else, and I may not be....I went to webmd and did the sx quiz. What was interesting is that when I answered I was numb in one hand, it then asked if it was just the thumb. It was. MS came up number one. There were others, all have been tested negative.

I guess where this has led to is this: Those who don't have a dx are in a sorry state of wonder. It's very hard. You see new folks come here that have one attack and get a dx the next day. Then theres those who have tested on and off for years, and have no dx, some who are incapacitated! There are some that have had less sx wise then me and have a dx. It makes me feel crazy!! I know I'm not. I was willing to follow that possiblity....but it's coming up negative too :)

Just understand that this is a hard place to be. I don't dwell on it (tho when I was fully numb I was frantic for answers). Now, I just enjoy talking, learning and sharing. I may have over reacted. Who else to share my fears with but all of you? I can't talk to family (except DH) as they all have it figured out....and I don't appreciate being dismissed or hearing how they experience this or that too....yeah??? You've been numb the whole left side of your body? You've had vertigo repeatedly? Whatever! So when I talk to all of you, its because I'm assuming you'll understand.

I agree Lady Express that stress can cause a flair. There is no doubt in my mind about that. It's imparitive that we learn coping skills to avoid the onset of sx.

Thanks for the conversation! :grouphug:

GJ and MX7 (and other Limbo Landers), I feel very bad if something I may have said on this thread has made you feel unwanted.

If so ... that was never my intention, nor was my post meant to demean your symptoms in any way.

I did post on the other thread the following "Please ..... Limbo Landers....no offence intended." and as that thread was referenced on here, I'd have hoped that what I'd said there,would also have carried through to here as well.

My apologies to anyone who may have taken my post the wrong way.

:hug: Koala

I don't think that anyone faults you. It's difficult without inflection or facial/body language or inflection.

This disease and/or its mimickers can be a real trial and we're all going through the sx in some way or another. It's easy to take one thing one way when someone meant it another.

ITA that coping skills are needed. Living on a roller coaster isn't easy. It's not fun knowing how you're going to feel (or not feel) from one minute to the next. But you do get used to it. Even after having 5 years of fun with this I get angry sometimes. I rail at the world, at God, at my body. And then I let it go. Because I know that I'm strong enough to handle this. Doesn't mean that I like it. I don't view myself as a martyr, but I do want to carry the "burden" of being "sick" as best as I can--without letting it define ME as a person.

Knowing I'm not crazy, knowing others go through the same or similar things helps a lot. And sometimes people CAN come down with something just because they've read it--it happens to some med students--they "live" the diseases they're reading about. that's ok. That doesn't mean we can't share. It doesn't mean we don't find comfort in knowing someone else can identify with what we have felt ourselves and maybe others have discounted.

For example, I remember when my neuro kept talking about clinical correlation. Geez, I got sick of those words. There was NO WAY he was ever going to get clinical correlation of my tongue tip vibrating. You couldn't see it! You couldn't FEEL it. It wouldn't have failed a neurological test. But it was there. It was as real as my hand in front of my face. I remember posting on another forum and someone came back and said they had the same thing. I felt SO relieved that I wasn't crazy. Clinical correlation be damned! I was vindicated.

And so it goes. newbies, limbolanders, diagnosed, old timers..... we're all in the soup together. It's an awfully bad tasting soup, but we're making the best of it.

And the best thing? We're doing it together.

:)

I must say that a global vote is needed to change the word "wannabe" to "wannadx". Thats what I wanted for 4 years before my DX in 1990.

Like you polar since October Ive had this annoying numbness from scalp to fingers. Yes have to pay attention to what I hold or it goes on the floor. Forget about trying to hang onto light stuff, it just goes anyway. Started with that band like sensation in stomach and is now around neck for who knows how long.

GJ, and the rest of the "wannadx" I sure hope you can find an answer to your problems. Unless your one of the rare cases to get an immediate DX , then we have all been there. If you disappear from this forum then I will have to track you down and hold you for ransom, and when I get paid have a party.

My greatest regret is anyone feeling bad today!! :grouphug:

Those of us that don't have our answers (i.e. ME!) may be a bit SENSITIVE and looking for validation. I obviousley misunderstood the meaning and 'my bad'!!! Maybe I was just mad because it's so easy to have answers when you know whats wrong...then there sits me, wondering WTF????

It's not anyone's fault...it was a moment of venting out after 6 months of nothing (but a firm dx for RLS, Situational Depression and my multiple bad back issue).

I hope everyone is feeling better tonight, I am after a good nap :o Please accept my apology!! You are all THE BEST!


I hate to choose favorites :p but YOU ARE ONE OF MINE!!!:hug:

Okay, Now I'm ROFL!!! "disease du jour".....too funny!!!

You brought this thread back to a good place, and I thank you for that! Inclusion feels good. Have I gotten sappy enough yet? :D

Name dropper...:D:D:D

:grouphug:

My right side numbness drives my neuro bonkers. I fail the vibration and pin prick test. I have trouble feeling heat, which is fun when you forget which hand is needed to test if the water is hot. :rolleyes: I sometimes have problems feeling pressure, which makes holding glasses a "no go"

The best description is my hand and foot are wrapped in saran wrap. The tight panty hose is another good description.

He still tests me for other possible issues every once in awhile since it's so bad, but so far - nada.