Need Quick Quix help - I'm getting desperate for an explanation.

[twopack]

I'm wondering if a flair can hit mainly in a cranial nerve (I guess it does in TN) or group of cranial nerves and make life MiSerable.

I've had several cardiac tests over the past week.  So far they don't indicate any structure, vessel, or blood flow problems.  They do repeatedly show 2:1 AV conduction block.  This is becoming increasingly symtomatic with a feeling of fullness and pressure in my chest and some shortness of breath.

After having an absolute strength draining session with a rate between 45-55, I'll come out of it and race in the 95-110 bracket for a while.  That is really not feeling very much better.  Today is one of those days when it's been near constant.  Matter of fact, it woke me up this morning.  I sometimes get a moment of relief with a fart.

Last night I also started with an occasional dry throat cough.  I can swallow but keep feeling like something is caught in my throat.  I feel full without eating.  My voice sounds slightly rough to me.  My BP was up this morning but normal or a little low now.  I can't walk to the bathroom without getting winded.  There's no chest pain, I just want whoever is sitting on there to MOVE.

The cardiologist didn't think the AV block was from any of my meds.  He didn't order anything new to stop this.  He wants me to wait to start the Copaxone so it's potential side effects don't muddy the symptom waters.  Yet he does admit that starting it and treating the MS could help the cardiovascular conduction system as "one of the simplest explanations is that since multiple sclerosis involves the nervous system and can affect autonomic function it is certainly possible that she has increased parasympathetic outflow causing AV block".

He made some comment about people not surviving when they show up at the office and show this rhythm on EKG.  He raged about how I need to take statins because it's an "unacceptable risk" not to.  He plans to see me in a month (with the first available appointment in mid-April).  I won't be seeing him again unless he's the one holding the paddles in ER.,

I saw my PCP yesterday (she only knows Dr. cardio through his consult note but doesn't care for him much either)..  She set up an appointment with a different cardio for Thursday.  I called work and told them I wouldn't be in this week.  I can't do anything when I feel like this for hours on end.

Is it possible this is a relapse and I need to call the MS clinic?  I don't even know weekend protocol.  That doc was freaked by my nervous BP elevation so I know he'd sent me to the ER.  I just don't want to go that route and sit around for all the things I'm already done.  Yet I'm useless and uncomfortable here.

Wish it would go normal again.  I feel myself between times.  Maybe I should go sit on a snow bank and consider it a chill pill.

IDEAS PLEASE !!!  CAN ANYONE RELATE OR UNDERSTAND THIS?

Mary

[twopack]

Hey Lulu, thanks for the reply.  I am trying to patiently let the cardio docs get the test results and figure this out.  They just seem to take their good ol' time, order one test at a time, wait, scratch their heads, repeat......  In the meantime I sit around and suffer and wonder if at some random moment I'm going to flip into a more sinister rhythm.  OK, that's out.

This cardio referred to Copaxone as a 'new' MS drug.  Since it was introduced in 1997, I doubt he is familiar with it at all.  I gave him the number to talk to the Medial Science Liaison at Shared Solutions.  Don't know that he used it.  For now I have fought off the temptations to start the Copaxone despite his cautions.  I'm trying to be compliant and not get too bad a reputation among the docs.

I did better on Sunday after a wonderful night's sleep.  A little activity had me going again by afternoon but not as bad as Saturday.  It's so scary because it just hits randomly and often puts me out of commission.  Sometimes I feel a little flip-flop in my chest as I go back and forth.  I think the TidyBowl guy floated in there on his boat and is kicking the switch.

It will be very interesting to hear an experts opinion about the autonomic nervous system and MS if you get to ask any questions on Wednesday.

Thanks for trying and caring,
Mary

[Lulu54]

Dear Mary,
I certainly understand your hesitancy to go to the ER, but please don't delay if you continue to feel this way.  Let the docs there decipher whether this is MS or cardio related.


The cardio obviously didn't understand this  dreaded side effect of copaxone.  I'm not sure I agree with his decision to delay you starting this DMD.  There is no documented case of someone actually having a heart attack from reacting to this drug.  The problem is fairly rare and if you are aware of this side effect and it happens, you can react appropriately.  As I understand it, the chest discomfort is immediate if you are going to react and is completely resolved in 15 minutes or so.  

I have searched a lot to find a link between MS and heart problems - all I find are anecdotal references to their relationship and even those are rare.  I still think there is a connection between my MI and my MS - but neither my cardio or neuro will play along.   I'm not sure you will do any better in getting someone to look at the two as being connected.

I wish I could tell you more about the AV Block - I feel pretty useless to you right now.

Hang in there, but don't hesitate to get help emergently if this continues.  

hugs,
Lulu

[mistylee]

bump