New neuro = new diagnosis.. Finally!!
 

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:grouphug:

warmly, Jan

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.

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.

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. :hug:

Cherie

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

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

:hug::hug:

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

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

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

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.

I most clearly have MS, AND secondary sjoghrens. I also have a glioma in my right front lobe. So, since I have been having migraines for years...I guess its all of the above.

The glioma hasnt grown, moved, or changed in 2 years that we have been watching it. I have traced back MRIs to 2002, and it was there! NOT ONE of those bullies that told me I was over reacting noticed the darn thing! just skipped on by it.

My worst sjoghrens is dry eyes. I have punctal plugs in the lower lids and OH what a change! not completely better, but I no longer feel like my eye lid is made of sand paper, and scratching my eyeball out of my head when I blink. Since starting copaxone I have stopped collecting lesions, and the ones I do have are smaller, and appear to be healing.

My attitude is the biggest change. I have stopped living my life as if death is around every corner. Horrible debilitating illness and crippling disease. Today, I climb out of bed, and get going. I am doing my best to ignore my nagging lil snotty daemon voice that says "you dont feel good, get back in bed." I am walking again, sewing again, and doing more things to fill MY cup, instead of focusing so hard on others. then I have to recenter that daemon in the afternoon when its time to take a break, and relax. stop pushing myself to the point of exhaustion. its OK to take a break! so, this learning journey has me learning about ME, and what I need to be a good person to myself.

I hope you get the answers you seek.

Jan,
I'm happy to hear you've gotten some answers. You definitely deserve them, as does everyone,and you were so patient. I know it's not easy and I gotta commend you for hanging in there and being your own best advocate. I really hope they can treat you and help you to feel better. :hug: Don't forget, we're here for you too!

So glad u finally found a dr that would listen.

I have dysautonomia also known as autonomic nervous system dysfunction as well as MS. I have been a guinea pig in Vanderbuilt University lab.

Good luck there are many reatment possibilities so if first drugs dont help keep trying

Bestof luck
laurie f

Thanks Laurie for responding. So YOU have Sjogrens. I know what you mean.. I cannot sleep as my eyelids get soo sore.. even after I just take the Restasis before bed. I think its gravity and laying on my back.
I usually dont get too bad during the daytime..but I have DRY MOUTH and take a pill for producing saliva..do you?

ANd.. I have such dry ears..that one in particular gets infected so bad.. the canal swells shut and they have to put a stint in it to get the ear drop antibiotics inside my ear.

Just having a doctor that will try to find some one answer means more than I realized. The worst for me are these dizzy..spacey headaches that affect my VISION and SPEECH. I can fake a lot..but not seeing.

Keep in touch my dear Laurie ok?

Warmly, Jan

Thanks.. your support is greatly valued..You seem so familiar to me..

This forum.. or rather YOU guys.. mean the most to me.

Warmly, Jan

Thanks Laurie for you support..it means a lot.

So YOU would understand and could help me with dsyautonomia. How can you tell the difference between the 2 disorders?? Do you have one neuro for both??

I would love to hear of what you are been through.. experienced..survived.

Please feel free to PM me ok?

Warmly Jan

I kinda figured.

My eyes are HORRIBLE! I wake in the middle of the night, and my eyes are glued shut! I cant even open them. they are not crusted over, its just that there is NO moisture to be able to even open them. My MD reccomended that I use baby shampoo, the no tears stuff, and make a solution of 10% baby shampoo, and 90% water. I use that mix on a thick wash cloth to wash my eye lids, eye brows, and lash line BEFORE bed. I then put on some FML ointment, or over the counter eye ointment, and go to sleep. This breaks up the dead crusts that happen ontop of the oil glands, stimulates them to release more oil, and brings blood flow to the area. its really helpful.

I suck on candy, lozengers, or chew gum. It keeps my mouth moist. I try to keep hydrated and it helps my sinus flow stay thinner, and easier to swallow or cough past. Always clearing my throat, I just thought it was something I had to live with, but was told its because my sinus drainage is so thick from lack of moisture.

go to Sjogrens.com and sign up for the moisture seekers newsletter, and stuff. I also got those eye pads or goggles that have moist packs, with heat/ice discs in them. VERY Soothing! They have a great website.

I am glad you found some answers.

Oh thanks for those tips Dejibo. I take RX philocarpine which creates SALIVA.. heavenly...works right away.

I will look up that Sjogrens site and try your tips.
I used to be on a forum for Sjogren's..nice people..but like it here the best..Then I did not have a Sjo DX so I stopped going. I may check in with them again..they were very supportive.

Best to you my dear

Jan

Hey Jan--very glad to hear that you've found a doctor who seems to be taking all of your problems into good consideration. I hope he can help your symptoms and help you get answers.

Best of luck!!

Nancy T.

Hi DM~! Thanks for your response. I dont have plugs..how did they apply them.. and who does that kind of tx??

I also have DRY ears.. leads to infections where my canal closes up as I do not produce enough wax..used to have too much.. now very very little. They put in stints and then drops to open up the canal.

Do you have Sjogrens?

Warmly, Jan