i need some direction...please

hi everyone,

i am freaking out; i don't know what to do.  

i have been dealing with ill-defined neuro symptoms since january 2009, have had clear brain MRIs, a questionable for myelitis, later determined "normal" c-spine MRI, and a zillion blood tests, normal VEPs, etc. etc.  i just went to see my third neuro in nearly 21 months last week who is having another radiologist review my imaging results to see if i really do have myelitis in my c-spine.  she will see me when she gets those results.

for the past few days, I have been feeling systemically terrible and seem to be developing pain and numbness in my "saddle" area, if that makes any sense.  my left side is also feeling weak.  i feel as if i have been poisoned.

who do i call?  what do i say?  what can they do to help me?  i am getting really scared again.

any advice would be most appreciated.

thank you all in advance,
binx

[twopack]

I can tell you are feeling very uncomfortable and looking to do exactly the “right thing”.  You have been given some very good advise.  I’m not sure what I can add.

I am interested to know what it is that is increasing your fear and anxiety.  Are you afraid of the potential diagnosis or that the pain will increase or that you won’t be believed or that the doctor’s won’t be able to find out what’s wrong etc…..  You say it’s coming back again.  What helped relieve this feeling before?

It’s true that fear can’t change the outcome.  But it can contribute to the severity of a variety of symptoms.  Maybe you could work on some distraction techniques to direct your focus away from whatever is causing your fear.  

This could be something like reading (but not about medical stuff) or watching TV.  Or you could work on a jigsaw puzzle or play some online games.  Maybe bake some cookies or listen to some favorite upbeat tunes you haven’t played for a while.  A mind finds it hard to concentrate on more than one thing at a time very well so the more concentration a task takes the more it will direct you away from your fear.

Or you could go the opposite way and spend a little time centering on realizing your fear and playing out the worst case scenario.  I’d only do this one if you know you can come up with some good outcomes to your worst cases.  I guarantee you the positives are there.  If you need help to see them, you would be better to save this choice until you have help at hand.

So, I said way too much for someone who didn’t know what to add.  Perhaps I am reading too much into that part of your post.

Oh, don’t be too surprised by the 2 day per week office hours for your doc.  Other obligations take them away more often they we suspect.  Does he have University connections?  He may be teaching classes.  Does he make hospital rounds or cover an on-call schedule?  He may take weekday hours off to compensate.  Does he have more than one office?  He might cover another office or clinic on alternate days.  Just a few possibilities.

Try to relax.  You have done what you can for the moment.  Vent here if it helps you get through.  We will be looking for your updates.

Mary

[figuerpa]

Hi Binx,

If I were you I would call your neuro, since it is a new one so that she knows of the knew symptoms you are developing. Explain exactly what you said here and see what she has to say about it, maybe she will get you in sooner to examine you herself.

There is something going on, listen to your body and do what needs to be done. In the meantime relax and calm yourself, this could be a long journey, it has been for many of us.

I hope you feel better soon. This forum has been a blessing for me and I hope you find it as comforting as I and many others have.

Take Care,

Paula

[illinwithoutacause]

thank you, paula.

i just called my new neuro's office and was told that she's only in the office on mondays and fridays which is surprising to me.  i left a message for her explaining what was going on.  we'll see what happens.

i also sent an email to my primary care doctor so she has this in my chart as well.  

i am trying to relax, but as you probably know all too well, it is sometimes a real challenge in the midst of a flare of new symptoms.

thank you again for your response.
binx

[figuerpa]

Binx,

Yeah I know it is hard to relax, believe me we have all been there and will go there again I am sure, but for me it got easier because I realized that whatever was going on was going to happen whether I got upset or not.

Glad you called your neuro and kudos to you for emailing your PCP as well. It is good to have all things noted in your files.

Good luck,
Paula

[michelleislay]

ah, good luck to you binx,
it is just so awful to have things happening that you have no explanation for.
keep us posted when you hear back from your doc or neuro!

[Quixotic1]

I agree whole-heartedly with Paula and think your best bet is to get the info to the new neuro that your symptoms are erupting again.  

A word to the wise.  Instead of saying you feel poisoned (which may be very true that you feel this way) say you feel really crummy and sick or whatever.  Try to use words that do not conjure up visions of paranoia or of actually knowing what is happening.

Example: "I feel like there is a snake moving up and down in my leg tightening and letting loose."  This sounds looney to some people and especially to doctors, who wonder if you really think a snake is a possibility.  The reality is that the person's sensation does conjure up this picture, but it is better to say,  "It feels like there is something like a band that is tightening around my leg that sometimes moves up or down."

I hope you get some answers soon.

Quix

[twopack]

I can tell you are feeling very uncomfortable and looking to do exactly the “right thing”.  You have been given some very good advise.  I’m not sure what I can add.

I am interested to know what it is that is increasing your fear and anxiety.  Are you afraid of the potential diagnosis or that the pain will increase or that you won’t be believed or that the doctor’s won’t be able to find out what’s wrong etc…..  You say it’s coming back again.  What helped relieve this feeling before?

It’s true that fear can’t change the outcome.  But it can contribute to the severity of a variety of symptoms.  Maybe you could work on some distraction techniques to direct your focus away from whatever is causing your fear.  

This could be something like reading (but not about medical stuff) or watching TV.  Or you could work on a jigsaw puzzle or play some online games.  Maybe bake some cookies or listen to some favorite upbeat tunes you haven’t played for a while.  A mind finds it hard to concentrate on more than one thing at a time very well so the more concentration a task takes the more it will direct you away from your fear.

Or you could go the opposite way and spend a little time centering on realizing your fear and playing out the worst case scenario.  I’d only do this one if you know you can come up with some good outcomes to your worst cases.  I guarantee you the positives are there.  If you need help to see them, you would be better to save this choice until you have help at hand.

So, I said way too much for someone who didn’t know what to add.  Perhaps I am reading too much into that part of your post.

Oh, don’t be too surprised by the 2 day per week office hours for your doc.  Other obligations take them away more often they we suspect.  Does he have University connections?  He may be teaching classes.  Does he make hospital rounds or cover an on-call schedule?  He may take weekday hours off to compensate.  Does he have more than one office?  He might cover another office or clinic on alternate days.  Just a few possibilities.

Try to relax.  You have done what you can for the moment.  Vent here if it helps you get through.  We will be looking for your updates.

Mary

[illinwithoutacause]

thank you, everyone, for your replies, and for the reminders of how important staying centered during these flare ups truly is.

ultimately, my fear stems from the fact that some of the symptoms i am experiencing are going to be permanent due to the absence of proper dx and treatment.  it is still not clear what is going on with me, but the more time passes, the more i believe i will be a long-term fixture on this particular board.

paula & michelle--thank you for the perspective and support.  i will certainly let you know when i hear from my neuro about what her thoughts are about all of this.  i got a reply from my primary care doc and she thinks it's okay to wait and see what my new neuro has to say.

quix:  as you recommended, i am normally very careful as to how i explain things to my docs.  after being handed prescriptions for valium or anti-depressants and shooed out of a few different docs' offices when this all first started, i learned my lesson.  i thank you for the reminder.

mary:  you did say a lot and every word was most welcome.  i thank you and feel that the distraction approach is probably best for me right now.  my stamina is pretty limited at the moment, so some of the more passive activities will have to do.

i will post an update once i hear something from the neuro.  i learned she staffs the local spine center on wednesdays and is off on thursdays, so i hope to hear from her by tomorrow (friday).

best wishes and many thanks to you all,
binx

[Quixotic1]

I can help (or worsen, lol) your main worry right now.  None of the treatment options actually will prevent any symptom from becoming permanent.  They will go into remission on their own or they will become permanent on their own.  Being on a DMD will not change that outcome.

I also see that there is a certain fatalistic (What will be, will be) note to that, but it does help remove the franticness from the search for treatment.

Just call me Doris Day.
(Que Sera', Sera')

Even if what happens to you is very good, we would like to see you as a permanent fixture.  :))

Quix

[Lulu54]

I object!!! I am the Pollyanna/Doris Day here on the forum.   Ok, I can share the big screen with Quix and anyone else who is able to look at this in a non-negative (I can't call it positive!) light.    there's enough energy to share here.  LOL

Seriously, Q and TP are so right about our mental attitude in dealing with this.  It is so darn hard to understand that what will be, will be, when it comes to permanent changes because of our MS.  We are going to end up wherever we are going to be, with or without the treatment.  It is just the treatment can delay us getting to that end point.

It is a crazy concept to grasp and I still struggle with the idea.  Neurological time moves at its own pace- which is usually pretty darn slow.  And neuro time takes its own twists and turns - this is definitely not a straight timeline.

Please Stick around here and I  hope you will learn a lot.  We love new voices to join us here and I hope we will hear your's again.

be well, Lulu

[illinwithoutacause]

hi doris,  ;-)

thank you, quix, for the feedback and information about how the DMDs work.  so much i don't know about so many things.

and thank you for the kind words about having me stick around.  everyone here is so compassionate--it's a wonderful thing.

best wishes,
binx

[illinwithoutacause]

hi lulu,

looks like i was writing to quix at the same time you were responding to me.  

my response goes to you, too.  thank you for the wisdom, input and also for the nice welcome.

best wishes,
binx

[illinwithoutacause]

well, friday came and went and my new neuro never called me back.  i even went to her office to drop off the CD of my scans from april and she wasn't available, so i left another note for her.

*sigh*.

binx

[illinwithoutacause]

hello again,

my neuro did finally call to tell me that she had gone over my MRIs with the radiologist she works with, and they concurred with my 2nd opinion neuro that the hyperintensities that showed up at C-7 and T-5 are not signs of demyelination.  Although MS isn't completely off the table, they do believe that what it could be is a hydromyelia which is a dilation of the spinal column caused by something like chiari malformation (which i do not have) or a traumatic spinal cord injury, such as a disc herniation impinging the spinal cord (which i do have at C-5-C6).  she did say that my neuro exam was consistent with disc injury, and she is ordering a repeat MRI w/ contrast of my C- and T-spine on a 3T machine (FINALLY!) and i should get the call to schedule it soon.

i don't know if this is the answer to the hell i have been through or not, but at least someone is thinking for a change, trying to help me and i am beyond grateful for that.  we shall see what the next chapter in this saga reveals...

thank you, everyone, for your support.  i will keep you posted.
binx