ROLLERCOASTER OF AN NL APPOINTMENT!!!

[niki3350]

Ok so back In January I was given my official cm 1 diagnosis 6mm decent by a NS, who at that point admitted that my symptoms could be chiari related, but to be safe he refereed me to a senior NS.

Had that senior nl apt today, and guess what he does not agree with ns and has said it not chiari causing my problems, Oh goodness here I go again.............   nl was very very through and I was happy when I came away after lots and lots of testing and 11 huge tubes of blood were taken.  His opinion is that I have a very rare disorder because I have very purple mottled skin and my symptoms do correspond with this,(cant remember the name) or I have neuro condition that has yet to manefest into something they can diagnose.... or I have very serious mental disorder, not depression or manic depression but a chemical disorder that is making my brain tell me that my body not working properly.

Im totally devasted as thought my worries were all over and that now I had my cm diagnosis I would get help, this is now not going to happen as this nl is talking to my ns before my appointment on Monday to tell him that my chiari is not problamatic in his expert opinion and is only an inciddental finding.

WHERE DO I GO FROM HERE????????????????????????????????????

Thanks for reading

Niki x x x

[niki3350]

Hi Selma,

Yes the NS is very nice and very approachable with a lovely manner, but I just no he is going to go with what this highly repectedd Nl has said.

The ns is checking my cine mri that was done at another hospital as he did not trust there findings and wanted to see for himself that there was no flow restriction, this is my only hope of him still going with the cm diagnosis.  I am going to ask ns to check my brain mri again as it was identified at my previous hospital to be bigger on one side than the other.

I have remembered some of what was said by the senior nl and this was it could be one of three things.

1  refelx symptomatic dystophy
2  A neuro issue that has not yet maifested iself on mri's in bloods etc
3  Somatization Disorder.

I believe in my heart selma that he is going to go with the Somatization disorder!!!!
Have read a little about this and yes I agree I have simalarities but dont meet all the diagnostic criteria, you have to fit into 4 catergories and one I dont this is the stomach upset catergory.

This NL was very to the point and told me after this last lot of results I really need to stop searching for answers that are not there, but they are and my mri clearly prooves it a 6mm herniation.  I just dont get it at all.

Sorry im venting again but I dont want to be labelled with physciatric and mental health issues that really are cm but noone will identify it as this, it could affect my whole career, who is going to want a teacher with phsyc issues who works in an extremely stressful enviroment.

God is this ever going to end.

Niki x x x

[selmaS]

  Hi Niki....do not worry about insulting the dr, u know ur own body...and there r too many of us given a dx of mental health issues without the dr looking further into what it really is...give us a band-aid of meds and send us out of their office on to some other unsuspecting dr.

Be sure to let the NS know u do not agree with the NL....and that u know he is well respected, but u know ur own body and would like his(NS) opinion as to what he feels is going on.

The NL may be well respected, but not well informed on chiari....so, u can push for another  opinion.

Do u like the NS?

  "selma"

[niki3350]

Thank you for your reply selma

Like I said it was a very intense appointment where I was poked,prodded stripped to my underwear and poked and prodded and stuck with pins etc some more.

My ns admitted that my cm could be causing the issues but to be on the safe said referred me to this NL to see if there were anymore underlying neuro probs, but in mho he totally misread why I had been sent to him, the nl was under the impression that my ns wanted him to confirm cm!!!!!!!!!!!

Result nl denies its chiari causing my probs and made me feel at times escpecially when he mentioned mental health like I was totally and utterly some kind of neurotic freak and mentioned physco therapy and cognitive therapy to get over this rollercoaster that has plaqued my life for the past 11/12 years.

When I go to see my NS on monday selma please could you advice me on what questions I should be asking him, my head is in a whirl, im confused and really stumped now as this nl is a very highly sought after practioner and the clinical director of the hospital, I dont want to insult anybody, just to be taken seriously.

Thank you so much

Niki    x x x

[selmaS]

Niki....ok, well not all NL know about chiari,..and u got a drip of a NL....

Next, have u been tested for something like Ehlers-Danlos?....it is possible to have Raynauds and have that purple issue on the skin as a result of the cold.....???
When a dr says ur chiari is incidental after u have the dx that dr in MHO is not well informed and is looking for horses when he has a zebra in the room......

And in my experience, the NL can make a dx, but the NS will make their own mind up as well....as long as ur NS is a chiari specialist.....not sure how the system works over there.

   "selma"