MS Tracker - how do we add symptoms?

[jensequitur]

I've noticed that there is no mention of tremor or general muscle weakness... and 'cramps' is descriptive, but not very!  Is there a way we can update the MS tracker to cover more MS symptoms?  

[Quixotic1]

Love it!  I'll add it.

[jensequitur]

Why don't we put tinnitus as a separate symptom at the bottom, in misc, and put hearing problems back at the bottom, too?  That'll keep things simple.  Besides, I just remembered another paresthesia!  Or should say I was reminded of one!  I keep having the sensation of somebody pressing on my face, just beside my nose.

Vision:
Eye Pain
Double vision
Blurred vision
Color perception

Digestive:
Bladder Problems
Bowel Problems
Acid Reflux
Swallowing

Equilibrium & Coordination:
Balance
Vertigo/Dizziness
Ataxia
Proprioperception

Movement Disorders:
Myoclonus
Spasticity
Spasms
Tremor
Weakness
Dystonia
RLS (Restless leg syndrome)

Mental Acuity:
Multi-tasking
Attention
Memory
Emotional Lability
Depression
Anxiety
Communication (written and spoken)

Paresthesia:
Pain
Tingling
Buzzing
Pressure or Banding
Cold
Burning
Trigeminal Neuralgia
L'Hermitte's

Misc:
Fatigue  
Heat Intolerance
Hearing problems
Tinnitus
Taste and smell changes
Sleep problems

[Quixotic1]

I agree about the headaches.

I see your point about the confusion.

Tinnitus is listed always as a separate symptom from hearing problems, like with Meniere's Disease - Vertigo, tinnitus and Fluccuating Hearing.  I see it as a separate problem.  With hearing we can have increased hearing and decreased hearing, but neither of those would include tinnitus.

Anyone?  Jen is being quite appropriate in trying to keep the list as manageable as possible.  

Quix

[jensequitur]

De nada, chica - I thought the idea of an MS tracker was a good one, just needed to be more accurate.

I think tinnitus would be under hearing problems.  If we wanted to do a breakdown of hearing, it would be:

Hearing:
Muffled hearing
Hyperacusis
Tinnitus

My vote is not to include the headaches.  I know we all get them, but it's not exclusively an MS symptom.

Confusion could be listed under Mental Acuity, although I think the symptoms that are there pretty much covers the gamut.

[Quixotic1]

Great to hear from you.

I think Tinnitus - ear ringing would be a good addition.

Facial pain and numbness would fall under Pain and Numbness.  We can't include all parts the body that can be affected or we would have a list hundreds of items long.

Yes, I think headaches could be included, even if the headaches were not being produced by the MS.

So, maybe add tinnitus, confusion, headache

Quix

[needanswers54]

What about earing ringing, facial numbness such as the chin, and headaches (?including migraine?)?

I have also heard of fasciitis type of pain or stabbing and burning pain, feeling like we have water running down our thighs, and like our skin is crawling.  

Oh, yes, and I also RARELY get these weird door-knocking sounds that even awaken me from my sleep--particularly when I have had a migraine or previous ringing or buzzing in the ears.  I have heard of others with MS having these.  Are these realling from the migraine, the MS, or are some of us just losing it?

[And how many people with MS get migraines--really BAD migraines.  I have them practically all the time.  I mean I need IV Dilaudid for them.  They have ruined years of my life.  They are worse then the postural tremors and the potty jaunts for me almost everyday.  I have tried every preventative that I know without luck.  Had them ever since my biohazard exposure almost twenty years ago when my immune system went crazy.]  

Did not mean to prattel-on.  Just in the ER and at the hospital several times with them this past month.

I am so glad you are starting this list!

Oh, yes, and if it is not also on the list--confusion and other cognitive/psych disorders from what I have read.

Great idea!

Torey

[Quixotic1]

I want to thank you for working on this.  I have submitted it to MedHelp.  They are behind on stuff like this as all of the programmers are working on updates, but will get to it as soon as they can.  I'll keep nudging them.

Quix

[jensequitur]

All right, sounds like we have a final list!

Vision:
Eye Pain
Double vision
Blurred vision
Color perception

Digestive:
Bladder Problems
Bowel Problems
Acid Reflux
Swallowing

Equilibrium & Coordination:
Balance
Vertigo/Dizziness
Ataxia
Proprioperception

Movement Disorders:
Myoclonus
Spasticity
Spasms
MS Hug
Tremor
Weakness
Dystonia
RLS (Restless leg syndrome)

Mental Acuity:
Multi-tasking
Attention
Memory
Emotional Lability
Depression
Anxiety
Communication (written and spoken)

Paresthesia:
Pain
Tingling
L'Hermitte's
Buzzing
Cold
Burning
Trigeminal Neuralgia

Misc:
Fatigue  
Heat Intolerance
Hearing difficulty
Taste and smell changes
Sleep problems

[Quixotic1]

That's where I would put it and I think it deserves its own place.

q

[jensequitur]

Oh, yeah - I don't have the MS hug anywhere!  Would that be classified as a spasm?

[jensequitur]

Quix, let's put them where the neurologist would put them.  What I want to see from this symptom list is something that the neurologist can look at and evaluate the patient - even if a neurologist never looks at it!

We could break paresthesia down into a list of different sensations - that way we could identify pain from neuralgia, as opposed to buzzing or burning sensations.

Lessee...

Vision:
Eye Pain
Double vision
Blurred vision
Color perception

Digestive:
Bladder Problems
Bowel Problems
Acid Reflux
Swallowing

Equilibrium & Coordination:
Balance
Vertigo/Dizziness
Ataxia
Proprioperception

Movement Disorders:
Myoclonus
Spasticity
Spasms
Tremor
Weakness
Dystonia
RLS (Restless leg syndrome)

Mental Acuity:
Multi-tasking
Attention
Memory
Emotional Lability
Depression
Anxiety
Communication (written and spoken)

Paresthesia:
Pain
Tingling
L'Hermitte's
Buzzing
Cold
Burning
Trigeminal Neuralgia

Misc:
Fatigue  
Heat Intolerance
Hearing difficulty
Taste and smell changes
Sleep problems

[biowham]

I love this list. Nice work. The current one really doesn't cut it. Even for those of us who just have some vaguely nonspecific "demyelinating disease." ;)

Bio

[Quixotic1]

This is taking great form.  I still feel that pain needs to be listed under paresthesias/

Under Mental Acuity - possibly Multi-tasking? Confusion?

There are several things listed under muscle problems that are medically classified as movement problems.  I can see listing it the way you do, but if someone were to look them up they would find them under Movement Disorders.  These are:

Myoclonus
Spasticity
Tremor
RLS
Dystonia

That would leave just weakness and spasms under muscle problems.

Your list of movment disorders is mostly Equilibrium and Coordination

Balance
Vertigo
Clumsiness
Ataxia
Proprioception

What about listing L'Hermittle's separately in the paresthesia group?

Also, what about listing Trigeminal Neuralgia?  It would also fit under "Pain", but it is such a common syndrome that it might deserve a separate listing.

Now, these are the way they are classified in the neuro exam.  It is not mandatory that we follow this, but it will agree more with the way the docs and PT's describe things.

These look great.

When I hear from you I can ask MedHelp to revise the Tracker template.

Quix

[jensequitur]

Vision:
Eye Pain
Double vision
Blurred vision
Color perception

Digestive:
Bladder Problems
Bowel Problems
Acid Reflux
Swallowing

Movement Problems:
Balance
Vertigo/Dizziness
Ataxia
Proprioperception

Muscle Problems:
Myoclonus
Spasticity
Spasms
Tremor
Weakness
Dystonia
RLS (Restless leg syndrome)

Mental Acuity:
Cognitive problems
Attention
Memory
Emotional Lability
Depression
Anxiety

Paresthesia
Fatigue  
Heat Intolerance
Hearing difficulty
Taste and smell changes
Sleep problems

[jed9999]

Oh, dear--I think I have caused some confusion, I'm afraid. I was so consummed with some problems in blocking which I was having on the Forum posts that I wrote about it as if everyone understood me--sorry. I wasn't speaking to a particular MS symptom at all in this last post. (I was saying hat I didn't agree with a system which had an X through something and called it UNblocking.)

Now if you interpret blocking as constipation, then yes, it's a well known MS symptom because of lagging muscle action as well as decreased sense of "urge." for that matter, I say diarrhea is as well--I suppose when nerve action is too brisk.

For a joint problem we do need Quix or someone else. LOL

Sorry to muddy the waters (no pun intended.)

BTW--another MS symptom for the list which I only had early on is : stiff neck

One day there will be a ~~CURE FOR MS!~~
Jane

[Octarine]

<lancinating pain like in one finger<

OMG, does it freeze up one joint intensely painfully, always the same one, at random times?  I've had that for about 10 years, thought it was just osteoarthritis, and my primary care doctor said, Nope, never even heard of this.  I didn't think to raise it with my neurologist since everything else seems so much more important.  Can anyone (Quix) explain this?

[jed9999]

Oh, My! Been having blocking trouble for a couple days! I guess I should have the following MS symptom on MY tracking: stubborness

I flat refused to entertain the idea that block could mean unblock and unblock could mean block--until some nice people put it in black and white for me to read in June, 2008    Now I know! Jane

[jed9999]

Thanks for getting us started, Jen! This is an excellent list!

loss of smell
changes in hearing
internal shivering
Trigeminal neuralgia pain and soreness
ear canal itching
judgment problems

brain still works--just takes awhile lol

[jensequitur]

Don't forget that symptoms like burning, numbness, tingling, pinprick pains, cold sensations, etc - all those are paresthesia.  

I dunno about pain as a separate symptom, as it's either paresthesia or spasticity or spasms, right?  Is there a pain that can be classified by itself?

[saveone]

There is another forum that has a tracker.  It allows you to type in your own symptoms or to choose from a list.  The list seems to be generated form the members symptoms as they are added.  It acts kinda like Google, where you type in a few letters and suggestions are made in a drop down list or you can continue to type your own.  Maybe Medhelp could do something like this?

terry

[jed9999]

We also should have somewhere:
extreme cold sensitivity as well as cold feet
limping
burning
NUMBNESS/tingling (for those who don't recognize paresthesias)
slurred speech
tongue and mouth numbness
confusion
muscle aching
I thought of a couple more earlier but forgot them already. Will be back. LOL Jane

[jed9999]

Others are itching, stabbing pain in scalp, light sensitivity,facial pain,lancinating pain like in one finger,someone said paresthesias--also dysthesias,menthol feelings all over--I'm sure there's more to this disease, but we're sure getting there! ARG!  Jane

[biowham]

Good lists. I just started the Tracker and would like to see several of these on there.

Bio

[Quixotic1]

Some additions

Pain

Gait problems:
  foot drop
  ataxia

Movement disorders (instead of muscle disorders)

  RLS
  Myoclonus
  Uncontrollable movements (dyskinesia)