New neuro = new diagnosis.. Finally!!

Jan4you · 01-23-2009, 10:07 PM

After 15+ years... 3 PCPs..all helpful.. 3 neuros..
(one MS.. one for Seizures/Narcolepsy/Sleep disorders) 2 Rhuematologists..I find the NEURO from HEAVEN. who specializes in neuro muscular and autonomic disorders.. he listened.. he validated me.

Remember in 2004 I was told by MS neuro.. "I will treat this as MS (after ruling out the mimics). Then no..I dont think it is..then I never rule it out..but adds SOMETHING very serious is going on.

So..I start researching autonomic disorders.. and yes the danger is diagnosing yourself. One Rheumy said I just had too many signs in spite of neg lab results so she DX Sjogren.. similar to MS with terrible DRY eyes.. Mouth..ears and internal organs..fatigue..etc.

The next Rheumy then takes that Dx away saying no cuz your labs are not showing Sjogrens..but maybe its an autonomic problem that is causing dryness..ok..ok...getting warmer..

Get a new job.. new insurance.. start ALL over finding a PCP etc. I swore off all specialists..what can I say.
New PCP says.. are they sure its not MS?? Are they sure its not also seizures?? So.. she refers me to this specialist.. the ONLY one with an autonomic testing lab..as HER mother also had a complex case and he was so thorough.

Finally see him.. immediately he apologizes for keeping me waiting.. waiting?? Maybe 5..8 mins thats all. HE listened.. he knew something was wrong.. a lot of somethings.

He hears all my experiences.. NEVER cutting me off.. or stepping over me. He had read ALL my records prior to my visit. and tells me.. You are right.. you do have an autonomic disorder..we both agree so I dont have to prove it to you, but I do have to measure it.. AND. I think you have an autoimmune disorder.. Sjogrens.. so I need a lip biopsy for that.
AND.. migraines in the Basilar artery part of brain.. could be why I have so many lesions.
AND.. he will test for NARCOLEPSY with Cataplexy..which the last neuro was in the middle of trying to DX.

You see I am "spacing out" for seconds at a time... missing information.. I have apnea at night AND during the daytime.. I have episodes where my HR/BP go whacko.. which leaves me so weak I can no longer mover my arms.. or legs.. or keep my eyes open.. I look unresponsive.. but.. I can HEAR. I am totally wiped out and my speech and cognition is awful.

SO FINALLY..

WHEW.. I was soo relieved.. How WONDERFUL for someone to listen.. to validate all my years of being dismissed in ERs..misjudged by neuros who were tying to make me fit (or not)into their speciality.

I would be no where without ALL YOUR support.. trust me. Unfortunately my symptoms are growing..changing.. winter and my job are getting to me. I only work.. rest.. and dread getting up each day..but I keep my attitude positive.

So a BIG THANK YOU guys and gals!!
HANG IN THERE if you are not DX.. there IS something wrong.. it just has NO NAME yet.

Best to you.. may random acts of kindness be yours.. and soon

warmly, Jan

weegot5kiz · 01-23-2009, 10:13 PM

Cool Jan, I am so glad to read this post. It is a nice thing to have a doc who listens to you and even ask your advice, I have been very fortunate both nero the neuro and my general doc are blessings. I am glad you found a doc your feel secure about.

Dejibo · 01-24-2009, 09:33 AM

I am glad you have kept at it. I took have been told oh, its migraines, oh its sjoghrens, oh its MS, oh its siezures, oh its a glioma...its dizzying.

What a God send to find one that listens, and is paitent, and kind. I hope you get the long awaited answers.

lady_express_44 · 01-24-2009, 11:12 AM

Hi Jan,

So glad you've found someone you feel you can trust, and who trusts you.

You have way too many serious health issues to be blown off, but you are right; just because it doesn't have a name yet doesn't mean it doesn't exist.

I hope this guy figures it out once and for all, and most importantly, that they can treat it.

Cherie

sabimax · 01-24-2009, 11:31 AM

Hey Jan, happy to hear, you found dr that listens..what luck I found a neuro this past week, that took hour and more to listen and study thru my sxs since 1999...actually since 1990.

Hoping all goes well and glad for the visit you had, hugsss,sarah

SallyC · 01-24-2009, 12:12 PM

Whew, what a relief, Jan. I am happy for you and your new Doc. Let us know how it goes.

Jan4you · 01-24-2009, 12:41 PM

Quote:

Originally Posted by sabimax

Hey Jan, happy to hear, you found dr that listens..what luck I found a neuro this past week, that took hour and more to listen and study thru my sxs since 1999...actually since 1990.

Hoping all goes well and glad for the visit you had, hugsss,sarah

Hiya Sarah..good for YOU!! What did your new neuro say? Whats he going to do next?

Please stay in touch ok? You mean the world to me

Warmly, Jan

Jan4you · 01-24-2009, 12:43 PM

Quote:

Originally Posted by Dejibo

I am glad you have kept at it. I took have been told oh, its migraines, oh its sjoghrens, oh its MS, oh its siezures, oh its a glioma...its dizzying.

What a God send to find one that listens, and is paitent, and kind. I hope you get the long awaited answers.

Thanks for your response..but I am curious. What did you end up being diagnosed?? Hope you are doing ok..coping.. and all.

Warmly, Jan

Jan4you · 01-24-2009, 12:48 PM

For all you have posted..Sally,, Cherie.. and Frank.. and all the rest..thanks a lot!!

For a long time I have not felt there was a forum where I truly belonged..as I could not relate..but what I could do is ENCOURAGE and support as you all do.

I mean it.. I need you too. This has been a very long journey.. and I lost my husband along the way.

But know this..YOU are not alone.
I will be there for you as well. Best to you !!

Jan

NurseNancy · 01-24-2009, 05:22 PM

hi jan,

i'm so very glad to hear that you've found a kind and knowledgeable dr.
i hope with all the dx that he can help you to feel better and decrease your sx's.

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