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New Here.. New Neuro..need Support ~!


mjan

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Hello all~!

Been on different forums.. made good friends.. know what its like NOT to be diagnosed.. dismissed..told to see a psychiatrist...but.. thankfully also have had a lot of docs TRYING to figure it out. Still trying to work..but again.. its getting harder and harder. WINTER is the hardest on me.

However, my new PCP.. God bless her.. referred me to the neuroloigst HER mother sees. He specializes in autonomic and neuro muscular disorders. He has no big EGO and welcomes my input. He read all my records prior to my visit..apolgized for being late.. late? maybe 5-7 mins. He heard me tell of my medical experiences..symptoms..and agreed that I have an autonomic problem. He said if we both agree I dont have to run a lot of tests to prove it then..but wants to measure it.

In past 8 years.. I was told I had TIAs..saw lesions on the brain.

then with balance problems..with many neuro symptoms..sent to MS neuro. Now MS ruled out.

He also thinks I have an autoimmune disease..probably Sjogrens. I HAD that DX by first Rheumy but the next rheumy said no..cuz labs were neg.I have SEVERE dry eyes.. mouth and ears.

HE also thinks I have basilar migraines..causing the lesions on my brain esp on the brain stem/pons area. I just started headaches nearly daily with dizziness..nausea..vision problems.

He also thinks I may have narcoplespy with cataplexy. I dont drop suddenly but eventually cannot move my arms..legs or remain alert..but can HEAR. My HR/BP usually race and go high.. then eventually drop into the normal to low range.

The recovery from these attacks last for hours..I am left weak.

He's willing to give me a try.

I WAS DX with MS for awhile..then it was ruled out.. in.. then out for sure.

I WAS DX with possibly seizures..then ruled out.. and narcolepsy as a possibility.

I WAS DX with fibromyalgia by 2 neuros .. then ruled out by 2 Rheumies.. I have all the "hot points".. pain sometimes. Who knows..

Epstine Barr sp?.. Fibromyalgia.. chronic fatigue..

So.. may I ask all your lovely folks here to help me with questions..testing especially..what is the normal kinds of tests ?? I had TTT and it was positive.

I also have neuro muscular problems.. tingling..buzzing.. tremors..even shaking INSIDE my HEAD sometimes when I am sleeping.

VISION problems.. blurriness..to focus problems.. it usually happens when I get tachy and HR/BP skyrocket. My BP usually goes UP UP UP..then crashes down.. and leave me wiped out. IT usually never gets really low..just withint normal range after being in the 190s/110 ish.

Been on a BETA BLOCKER which has helped some..he asked me now to take in in half.. one half in AM.. the other in PM.

Thanks for replying.. or reading this post. I am sorry for ALL you have been through.. I will support you too ~!!!

Warmly Jan

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Welcome Jan,

We are all sorry that you are here, but glad you found us. Wow, you have A LOT going on! Many of the things you could have would cause your dysautonomia; but until you know what they are we'll just try to do what we can! ;)

I have never met a more helpful, supportive group of people in my life than the ones on this forum. Vent, rant, ask questions, we'll give you our best!

Genuine wishes for hope and healing!

Jennifer

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Thanks Jennifer.. you are the FIRST and it means a lot..best to you~!

But I am about to have the 3 hour AN testing.. what should I expect? Its the autonomic sweat test.. what should I expect? What if I do not sweat?

Just had the urine and blood tests so far.

Thanks Jan

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Jan,

I have not had a sweat test done, but I can tell you I DON'T sweat normally. During my orthostatic tests at Vanderbilt I began sweating in my "normal" spots: hands, face and feet...only...nowhere else. I used to sweat easily, all over, but don't anymore. My Pilates teacher mentioned it one day when my back was sweating, she said "I've never seen anything but your hands sweat before!" We live a crazy sort of physical world dealing with our dysautonomias. If you do a search here for "sweat test" you'll get more info.

Keep posting!

;)

Jennifer

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Hi Jan,

Welcome! I don't have any answers for you, I just wanted to say "hello!" and tell you that I LOVE your new neuro. A doctor (anyone for that matter!) without an ego is such a nice change. With his help, and the new testing you're doing, I'm sure you'll get to the bottom of things quickly. Best of Luck to you.

Julie

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Guest tearose

Welcome newbie Jan!

I am very sorry for all you have had to endure. Please know you can share here and know everyone does their best to share their experiences with you too.

I hear your frustration but you are on the right path when you have an excellent doctor who can help you figure things out together. I think you will see many of us have been through dozens of doctors and tests before we learned that the best way to get an accurate diagnosis is by going through complete Autonomic Nervous System Testing.

As for the sweat test, what is the one you are having called and where are you having it done? There are different types.

best regards,

tearose

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Welcome, Jan. You have found a place for comfort, support and help. You can feel free to ask any questions, vent frustrations and also offer comfort to others. Glad you have a good doctor, so many here have had bad experiences with non-believing docs. Anyway, welcome to the best place possible. Cant tell you how much help and compassion I have found since joining.

Healing hugs and very best wishes----

Susan ;)

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Jan brings up a question that I think we have all had a one time or another. "What are the normal types of tests?" Is there someplace at the DINET Forums that has them all listed and explained? It might help the 'newbies' (like me) to have one place to look. Just a thought!

Jan, keep us posted and I'm glad you have found a Doc you are confident in. ;) That means a lot!

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Jan brings up a question that I think we have all had a one time or another. "What are the normal types of tests?" Is there someplace at the DINET Forums that has them all listed and explained? It might help the 'newbies' (like me) to have one place to look. Just a thought!

Jan, keep us posted and I'm glad you have found a Doc you are confident in. :) That means a lot!

If you go to the homepage for the website (look at the top left corner of the screen under the BIG DINET) and then to POTS and then to detection, it lists all the tests most of us have had or need. Poke around, you can find lots of links and info from there. ;)

Welcome to our Extended Orthostatic Family!

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