Quix and friends

[frann]

P;ease forgive me before i begin... today was an difficult day & i just spent close to 4 hours in the car going back /forth to see the neurologist who specializes in memory disorders at Columbia Presbyterian, Neurology center in NYC.

First of all, I prepared a timeline by hand ...it did help me sort through the years of symptoms, although at times i felt like i was rambling when he asked me questions. I went over them with the doc & he listented then examined me/ he then did that neuro cognitive quickie test... you know...repeating words, numbers, addition, some copying.... i did do poorly again with the recall...it is my weakness.. i feel like a moron (excuse my description) but when i have this difficulty i started to cry... i felt so vulnerable. My poor husband looked like he was going to cry with me... i know he felt awful for me....

Anyway, after the testing, we sat & talked .... he feels we can rule out alzheimers, early dimentia... but he did not feel like it was coming from any neurological whatevers... in other words.... you guessed it... it is probably anxiety related... and he wants me to take 10mg of lexapro daily.... he is requesting some serum  lab work... he is requesting Folate, B12, RPR, TFTS ( coded 780.93) what is that... code for whacky??
He also wants me to have my Brain MRI  from Oct 2006 sent to him to review
He also wants to see the scores on the psychoneurological testing i had done in may... He had the written report... reviewed it but wants to see the scores himself...

Anyway, I then asked him about the neuropathy, balance isues, dizziness, heat intolerance, fatigue... he seemed to feel that they were not part of the cognitive issues... that maybe i am anxious over my symptoms, long history of chronic pain. I have to say i don't disagree totally...
i think it would be unhealthy to just say "oh well that's the way it goes... big deal... right??"
I think i have a right to be somewhat anxious...BUT... is that the cause of the cognitive problems...
i didn't think so but now i am so confused... did he just chalk me up as a psych case???

Where do i go from here???
Is my regualr neurolgist now going to chalk me up too... is she going to take my other symptoms seriously?
This is a bad day... i  ache all over, my skin is on fire, and the nerve tingling in my legs is going on overdrive.
I hope you guys can forgive me for ranting... i am looking forward to your advice.

Take care & God bless you all
Frann    

[Quixotic1]

Oh, I'm so sorry!  This seems to be a day for feeling dismissed by the medical profession or by one's family.

The neuropsych testing is fairly sensitive for teasing out anxiety and depression - not infallible, but one of the best we have.  That the guy today saw mostly anxiety does NOT invalidate you or your symptoms or rule out anything else neurological.  But, anxiety can magnify or mask other symptoms.  And, it's the rare male doc that understand's that a woman, even a mentally healthy one often has tears when very frustrated.  Those tears do not necessarily mean there is uncontrolled depression or anxiety.  They ill never understand.  Even so the testing is pretty good, I think.

I have a friend who sometimes posts here, Sherrizim, who is in a psychology PhD program.  I'll ask her to address this.

I would recommend that you accept the assessment that there is a significant amount of anxiety happening (whether it is the result of other problems or the cause of some doesn't really matter at this point.)  Start the Lexapro and read some stuff on relieving anxiety (breathing excercises, guided imagery, prayer, mediatation) and institute these.  When you speak with your neurologist tell him that you will do these things to relieve what anxiety there may be, but that deep down you still feel that there is still something else going on and will she continue to do the appropriate work up to help find that out.  Speak up and ask her not to dismiss you as an "anxiety case."  Say the words first with your acknowledgment of the possiblity of anxiety playing a role here.

Go in with the attitude of trust and cooperation (play the game, it may well be worth it).  You don't need to grovel or lose your dignity, just ask that she work with you as you will work with ther and the consultants.  I think this should preserve your relationship.  If she dismisses you, then find a new neuro.  Others here may well disagree with this recommendation and I hope they speak up.

Do you have the full-blown "Antiphospholipid Syndrome?"  I ask because it includes neurologic problems and is a very good mimic of MS according towhat I was reading last night.  You can have (I think) positive and active antiphopholipid antibodies without having the full syndrome.  You might ask your rheumatollgist about this if it was never discussed.

TGT's are Thyroid Function Tests.  The CDI 9 code 780.93 stands for "Memory loss, not otherwise specified."  It excludes memory loss due to organic brain disease (dementia).  This is fine.  He wrote down what he documented but not what he suspected.  You're okay here.

Rant all you like!  You're safe here.  Let me know what you think of my recommendation.  Does it sound okay (to keep you in the diagnostic ballgame) or did it make you a little angry.  Both reactions are fine, but I need to know.  ((HUGS)) Quix

[frann]

First of all, I am sorry you were not feeling well yesterday, I hope you are feeling better and thank you from the bottom of my heart for taking time to get back to me.

Today I can breathe a little better after the rough day I had yesterday.

I sat and discussed all of this with my husband and daughter and both of them feel that i do have alot on my plate. Besides the actual symptoms i have been experiencng, the worry about the cause, not working or if i should ( i am on an extended medical leave), as a school nurse, it would be very difficult with many of my symptoms i have...will i be approved for disability??? these are some of the worries...

Did they cause the cognitive issues i have?? i really find that so hard to believe but i am willing to try the lexapro to see if it helps. As for the testing by the neuropsychologist, he saw true cognitive concerns and stated that in his report. He also stated  that  i did have anxiety over what i am going through...  and that sounds like healthy anxiety, he never stated that he thought anxiety was the cause.

The doctor i saw yesterday was definitely impacted by my being upset...as soon as i did get myself together i thought "He is going to think this is all in my head"..

I do appreciate that he coded my script not as a psych diagnosis & is willing to review the mri/ do new bloodwork... what is he looking for in that bloodwork?? what could they tell him??  pernicious anemia? thyroid disorder? do they cause my symptoms??

Thanks for researching the antiphosphlipid antibody syndrome... when my rheumi told me about it he did say "the syndrome"... BUT, I am going to contact him & see what he has to say... i have not seen him since last summer... so it may be worth the 3 hour wait in his office to get a few minutes with him to tap his brain about all of this... especially since he is unaware of what has been happening.

I have mainly been under the care of my neuro... speaking of which, i willl take your advice and let her know that i do trust her and will cooperate... i hope not to lose her relationship... so far  she has been very willing to dig deep and not give up on me...

Quix, you truly are a blessing and your adivce was good and sound... i appreciate you!!
GOD bless and feel better, you are in my prayers.
Frann

[Quixotic1]

I think it is wise to revisit your Lyme diagnosis.  First off, were you diagnosed in the first acute stages of it after a tick bite?  Or were you diagnosed with chronic Lyme and it's complications.  The implications and recommendations for treatment would be different, I think.

Quix

[frann]

Hi again,

Actually they found out i had lyme in 2000, after i had a severe headache and almost had a car accident, was taken to er/ they suspected an aneurysm... the headache was beyond anything i ever felt in my life... mri was ok. so they did a lp/ blood work & sent me on my way... it was 2 days later notified by my pcp...  hey, you have lyme disease probably complicated by the mixed connective tissue disease... it was found reactive in the seurm/ negative in the spinal  tap...pcp felt i propbably was bit a long time before the diagnosis... do not recall  any rash, etc.//so they put me on oral antibiotics for 6 weeks... i did feel a little better after 2 months or so...
since then, my most recent lyme test, western blot/ at a quest lab... was negative... so, what do you think??

Quix. another comment that neuro told me that i forgot to share was when we talked about possible causes of my symptoms, ms was brought up ... but... he said that he doubted it.. that my symptoms never seem to go away... & that is not the case w/ ms pts... ??? what the heck does that mean??
I reminded him that i began to have bouts of this numbess/tingling in 2005, not daily, but it went away, now back strong since oct. including the dizziness, balance issues,,,
these are new issues since oct...
but he seemed to dismiss me... especially since the mri was clean...
he will look at it himself but i think he is sure it is not ms... he did not even address the antiphsophlipid antibody or lyme...
he just said  that it was not his area of expertise... he was only addressing the cogntiive issues... which i already told you he felt might be due to anxiety...
he did not acknowledge that antiphspholipid antibody syndrome/ & lyme  does sometime s affect patients cognitively... & dismissed entirely MS in his eyes.

Also, I am calling him back, he scripted for lexapro, when i read about it, it stated to contact your md if you are on any aspirin or blood thinners, since i am on 81 mg asa/ plavix, I am not sure if i should take it ... he knows about my meds but who knows if he forgot (ha, ha)
i just want to be sure...

Hope you are feeling better. Thanks for feedback.
GOD bless,
Frann

[Want to feel well!!!]

Sorry you are having such a hard time. And ranting here is a great way to help cope.  We all rant!

I just wanted to put my two cents in...I'd take Quix's advice and play the game for now, along with everything else she said.

It is nice to hear that your family is involved in this with you,  That is a big help!

Take care...
Wanna