Getting ready for my Appt.

[jibjen]

Hi guys,

I'm getting ready or my next appt. with neuro and put together some questions..wondering if i can have your input...

This is a list/timeline (the best I could) of my symptoms and questions

1/20/10 my right thumb became numb and then came back to life
1/21/10 my right thumb became partially numb I also had a wet feeling/sensation down left leg
I started my menstrual cycle with the abcense of cramps (which is the 2nd month this has happended) totally not me....

2/9/10 lying in bed and my right hand got tingly then my right thumb and pinky went numb and then came back.tingling went away. lasted 1/2 hour

2/25/10 the prickling sensation came back in my left hand and increased and became painful
3/5/10 the prickling sensations in left hand has subsided but hand is sore and arm feels weak


I have also had tingling that goes down into my left big toe ONLY and then goes away. I sometimes get a tingling sesation over my scalp..

Questions:

The EMG he did was normal - Did that rule anything out for him???

Is the missing cramps from my menstrual cycles considered a sensory symptom? I NEVER NOT have cramps.
I have also had a decrease in sexual libido has been way down for last 2 years (which I told gyno) Is this related???

I have had difficulty in meetings and being able to hold conversations/concetration and with words/names
(the words and names is nothing new but not being able to be in a meeting is

I also had a few nights of twitching while awake 3 seperate episodes..It was like i was having another EMG test.. have not had anything since....

I know these may seem like odd questions but I do not know what he wants/needs to know from me at this point...Do I even bring these up????? or is he gong to think I am a maniac.

Also about migraine meds..He wants to stop them this appt.

Questions:

Why
What do you think this will do as far as my symptoms
What do I do if I have a migraine..I pop  pill when I feel pain in my eye..is that a true sign of migraine? or is my description been off...

Well? Any input would be helpful
Jibs

[illinwithoutacause]

hi jibby,

it sounds like you went in to your appointment with a great game plan.  we'll all look forward to hearing how it went when you have the time/energy to give us an update.

thank you for your good thoughts about my appointment yesterday.  i hope your experience today was equally positive.

best wishes,
binx

[StormyRenee]

Good luck today jibby!
I am sending you happy thoughts and every crossable thing is crossed!

Take Care, Theresa

[jibjen]

Hi-

How are you?..I hope all is well.....I went thtrough my list last night and revised it..I must say even I got confused and frustrated reading it so only listed NEW symptoms/issues from last visit as I figured he already has loged what has been going on so why repeat and di not want to sound "anal" about things..short and sweet..I tried to keep my questions open in which he would not just answer yes or no but would have to explain without be baggering....or overtaking the conversation..I have only taken 2 migraine pills since I last saw him.....(3 months) so my migraines are quite minimal as they have been for a while...I have never had to refill the script..He will be weening me off them today so he said at last aappt..I take Topomax daily and Amerge when needed.....Keep you posted..

Binx - I am filled will joy for you that you had such a positive appt. with youur doc....

Bye for now..I'm out the door
Jibs

[Udkas]

Best wishes for your appointment tomorrow, I hope you get some answers.  Your symptoms sound so much like mine, but I know mine are migraine without the headache, but I do have other neuro problems as well, that's just it you can have MS and migraines.

Keep us posted on how it goes.  I always take a list of symptoms and questions for my neuro and I keep a copy myself and he always answers every question on my list and if he wants to ask more about my symptoms  he does, but I have a very nice neuro.

Good luck, I will keep my fingers and toes crossed for you
Udkas

[jibjen]

No worries,

Well, I think everyone goes through that time where they feel good and want to hold on to it as long as they can for as long as it lasts...I do and then can sometimes over do things..take it slow

Sounds like your wife knos you all too well : o) but is willing to let you go at your own pace...You must be somewhat anxious to get back to work and get a routine ..MAKE sure if you eed help you ask!..I have cognitive issues too..be patient with yourself.

Yeah..my husband has "rules" about the remote...I basically ignore them ;o) I go straight to HOUSE channels to **** him off when i'm mad at him ;o) otherwise my brother bought me the Seasons Box Sets for Christmas so I'm caught up for now ;o)

I do lke that channel that has "How it's Made" that's cool..and the Mythbusters  is okay...

And Mike...LOL I totally got your funny...Who says you can't be a psychotic idiot and not have something else wrong with you....:o)

Be Well!!!
Jibby

[Mike_Shuswap]

Hiya Jibby,

It's taken a few days for me to answer you, sorry, I wasn't sure what the answers were yet. Now I think I know.

I am still feeling quit good...but maybe not quite as good as I thought. I haven't done anywhere near as much lately as I wanted to do. No where near the energy I need, but I'm trying.

I know I don't have my wife fooled, but she's going along with my plan to return to work after my next neuro appt. the end of the month, even though she thinks I shouldn't.

She agrees I've improved physically, and when I stumbled around a bit today while trying to prune a tall shrub she said "feeling a bit wobbly"? and I answered "only because I was looking up" she didn't argue....but I know she knows...it's more than just because I was looking up.

But her main concern is my cognative issues. Me too. but hells bells, I've worked with dumber guys than me//not much dumber...but dumber.

I figure I'll recognise when I'm getting over my head and call one of the other guys for help. My wife figures I'm too proud to ask for help because over the years I've been the guy the other guys went to for help. She might be right. I hope not.

Speaking of HOUSE (you brought it up) my wife had the tv control the other day (totally against the International TV Remote Rules, but she is a modern woman) and while she flipped through the channels ONE-AT-A-TIME (again, a flagrant disregard for
the ITVRR) she passed by HOUSE. Not once, but several times. Imagine my glee when without a word she selected a Natural Geographic special! Oh Joy!!!

I never said a word....didn't so much as breath for a few minutes so as not to break the spell....waiting for her to click the remote and shatter my hopes....my dreams......
nothin'.........no trick....(not like that heartless HOUSE b$stard!!)

We spent a lovely hour watching the mating habits of the eastern wombat (or something like that)

Anyway, Jibs, remember, even if your doctor tells you you're a psychopathic idiot, that doesn't mean there's nothing wrong with you. (my lame way of trying to be funny)

be well

Mike

[jibjen]

Hi,

Good luck with your appt...i'll think of you and keep my fingers and toes crossed..

I'm sending you all my best wishes in hopes you will feel better..

I know what you mean about expectations at appt...I get mine pumped up and then let down..plese keep me poted.

Jibs

[illinwithoutacause]

my 2nd opinion neuro appointment is on 3/17 so we both have a big week next week, huh?

thanks for asking about me.  i have been struggling more than usual which explains why i haven't been communicating much lately.  i don't know if this is a natural progression of my illness or if the steroids really messed me up, but i am really feeling poorly.

i am trying not to have too many expectations for my appointment next week but it's been hard not to.  i'll let everyone know how it goes.

take good care,
binx

[jibjen]

Hey Binx,

Hi,

Thanx..My appt. is on March 18th..I start out with good intentions and I get there and all fobbled up... I will do my best..I need to go backwards a bit on this appt. and ask what i didn't ask when I should have...

How are you? I hope you are okay.....I just sometimes get wrapped up in stuff..

Thanks again
Be Well
Jibs

[illinwithoutacause]

hi jibby,

i also don't have much to add that you and other folks haven't already covered, but i did want to wish you the very best for your next appointment.  i just want to encourage you to muster up the strength to advocate for yourself as best you can.  i know it's hard--i have had similar problems myself, but just know that you have every right in the world to ask as many questions as you want to about what's been happening to you.  this is your body, your life.

when is your exact appointment date?

best wishes,
binx

[jibjen]

Thanks for your support...I tried really hard to keep everything in check and when i went back to read it to put it all together..i was totally confused..no surprise for me..

Keep your finger crossed :o)  even if it is just one hand LOL...

Funny how you don't notice things,even the silliest until you go to do them....

How are you..Have you been getting alot done around the house? HOUSE? just kidding...

Have a good one..and I'll let you know about my appt...He may just tell me I'm a psychopathic idiot..at this point..I feel like I can't argue with him...(I'm having a tough time)


Be well my friend
Jibs

[Mike_Shuswap]

Hey Jibby,

I don't really have any useful input for you, just wanted to let you know I'm pulling for you.

It's always a bit stressful getting ready for a neuro appt, but it sounds like you're doing what you can to be prepared, (timeline, asking for input..) You've actualy just inspired me to get a move on and prepare for my next appt March 29. Thanks.

The best of luck to you! I hope you get a lot out of this next neuro appt.

Mike

[jibjen]

Thanks guys..

[StormyRenee]

Right on silkcut...Great answer!

I do think you should bring up your menstral issues...At this point anything could be related..

Good Luck!

XXXXTheresa

[MrsAristotle]

Well silkcut has answered it very thoroughly.

You can just never tell with a neuro what is helpful. I did a pain chart/image which my neuro thought was brilliant and apparntly showed it to his colleagues fame at last lol. But it showed him mine was pain mostly in the left and sensory stuff on the right how bizarre is that.

Anyway good luck and just relax and breath ok lol. xxxxxxxx

[silkcut]

Hi Jibby

First of all, I'd want to emphasise that ALL your questions are valid. If something bothers you then you are perfectly entitled to a reasonable answer. (There are no stupid questions - only stupid answers...;-)

Next, my own personal bugbear - migraine... I don't know how long you've been on the meds etc or when migraine was diagnosed, but I very strongly recommend that you read the International Headache Society's diagnostic manual. Online at   http://ihs-classification.org/en/

It really is essential to understand what the criteria are for the diagnosis of headache and migraine. Strictly speaking migraine is not a headache but a neurological disease. It seems that some doctors stray from the internationally accepted criteria for migraine and people get misdiagnosed and mal-medicated. All sorts of other spinal conditions show up as headache also - it seems that some doctors just stop at treating the headache without going further to the cause.

But what do I know?! I'm just a lowly patient who gets routinely dismissed!! I guess your eye pain could be a precursor to migraine, it could also be a load of different things too...

EG - Retinal migraine (per IHS manual):

Diagnostic criteria:

   1. At least 2 attacks fulfilling criteria 2 and 3
   2. Fully reversible monocular positive and/or negative visual phenomena (eg, scintillations, scotomata or blindness) confirmed by examination during an attack or (after proper instruction) by the patient's drawing of a monocular field defect during an attack
   3. Headache fulfilling criteria 2-4 for 1.1 Migraine without aura begins during the visual symptoms or follows them within 60 minutes
   4. Normal ophthalmological examination between attacks
   5. Not attributed to another disorder1

Note:

   1. Appropriate investigations exclude other causes of transient monocular blindness.

Comment:

Some patients who complain of monocular visual disturbance in fact have hemianopia. Some cases without headache have been reported, but their migrainous nature cannot be ascertained. Other causes of transient monocular blindness (amaurosis fugax), such as optic neuropathy or carotid dissection, must be excluded.


Re the numbness and tingling - have you studied dermatome and myotome charts? Here's a start: http://www.apparelyzed.com/myo-dermatomes.html

Personally I've taken to noting down every single little twinge and then putting them into timelines as well as groups of symptoms as I would write a factual academic report. No doctor ever wants to see my precis/executive summary - but the exercise of writing it down formally (as a sort of lab report) really helps me to be on the ball when I'm actually in there with the neuro.

...welll,ya know...'on the ball' is a stretch... but the hours of constructing and learning the list within strictly scientific parameters makes me feel a bit more confident. Before I saw the neuro in Feb, I'd written down verbatim - for 'fun'! - what 5yrs' worth of various doctors have diagnosed/told me that I have. Amazingly, the neuro actually asked me just that question! I was able to reel off quite an impressive list of his colleagues' pontifications!

Sorry, jibs, if this is a loooong message....lots of action-reading stuff there though! That's hard if you're beset by eye probs and headaches and foggy heads...
big hugss
sammxxx