Pleasently Surprised....

[erikainorlando]

I have seen my neuro for Guillain Barre since 02. I talked with him very briefly in March after my diagnosis. He said at that point let the EP treat me and if no real improvement he wanted me to go to Mayo.

Since then I have been seeing my EP and I usually see my neuro's nurse practitioner as my neuro takes for ever when I go there. But I waited and saw my neuro yesterday. He really is a very nice smart man. I told him of my diahrea in addition to my regualr HR stuff. He said he thinks it is autonomic dysfunction (the diahrea) and all related. He wants me to go to Mayo. He feels that this is the 2nd post viral neurological problem and it is worth seeing someone who can tell is there is something underlyibng it. He said he wants me to go to see cardiology and neurology...he knows the guy in neurology.

Hmmmm. Well, now if I can get my ins to pay. Mayo is out of network...this may be difficult.

Erika

[mjan]

Sounds like you trust this doc..but why Mayo? Isn't there any other evals/tests someone can do beside going to Mayo?

Ive had my share of specialists..neuros..Rheumatologists .Pulmonologist/sleep disorder doc..GI doc and great PCPs all smart..putting their heads together to figure ME out. They ALL say.. I am a complex case but I would rather hear that than they make up something or call me crazy!! LOL

Hope you get the answers you need. Let us know... J

Warmly Jan

[janiedelite]

Hey, I'm glad you have someone who can help you locally! It's unfortunate that so many neurologists are so intimidated by autonomic dysfunction, or so it seems. It's like if they can't fix it, it's not broken. Good luck with the insurance. I'm sure you're aware, but your neuro and PCP can petition your healthplan to cover Mayo if there is no similar treatment/diagnostics available in your network. Most health plans do have that clause.

[Maxine]

It still puzzles me that neurologists seem to know so little on the ANS.

The Autonomic Nervous System IS part of the nervous system?

Maxine :0)

[Maxine]

It still puzzles me that neurologists seem to know so little on the ANS.

The Autonomic Nervous System IS part of the nervous system?

Maxine :0)

[Maxine]

It still puzzles me that neurologists seem to know so little on the ANS.

The Autonomic Nervous System IS part of the nervous system?

Maxine :0)

[Maxine]

It still puzzles me that neurologists seem to know so little on the ANS.

The Autonomic Nervous System IS part of the nervous system?

Maxine :0)

[skyblu]

LOL..you can say that again, Maxine

Anyhow...I agree...neurologists should have a basic understanding regarding problems of the ANS. I haven't found one yet who does.

Erika....do you also have medicare?

[Maxine]

It looks like this site was a bit slow when I posted, and I kept pushing submit, submit, submit, submit------- Then I gave up, only to come back and see four posts---lol. Oh well, maybe neurologists need to see this four times!

Why don't they get it? They probably can't wrap their head around it--------------------it's not cut and dry enough.

I have to say that neurologists have been the least likely to help me, and it's difficult to believe, as I have more then ANS dysfunction going on as you can see from my signature line. However, my issues are more complex, so here we go again--------too much to wrap their head around.

How insane is THAT?

Maxine :0)

[erikainorlando]

Hi all.

No I do no have medicare. I only have Aetna...HMO.

I think he wants Mayo as he wants to see if their is a connection between Guillain Barre and POTS. I don't think necessarily it is a POTS diagnostic tool thing but rather, why in Gods name, does she keep getting the weird bad things in her nervous system after a virus.......and can someone make her more comfortable. We can't seem to find someone to connect the dots locally.

But he at least tried. I saw a differnt neurologist a while back locally...she simply said "I didn't study the autonomic nervous system". Then she took my BP laying down and then standing...and said..."no...you don't have POTS....your BP is pretty stable". I told her it was really only affecting my hr...then I decided to save my breath............

Erika

[mjan]

Actually Maxine your "multiple" posts. made me laugh a bit as that is something I would do for sure!!!

But oddly enough of the 3 neurologists I had seen..and 2 Rheumatologist who got closer..it was the 2nd Rheumy who ruled out a disorder and said its probably autonomic and write a letter to the NEUROLOGIST ..only I am sure he never read it cuz he made NO mention of it or what to do.

It took my changing jobs.. then insurance...then ALL new docs where my new PCP's own MOTHER has dysautonomia and referred me to her specialist another neurologist who ONLY treats autonomic problems.. LUCKY me!!

At least ER docs need to know how to recognize this somewhat.. and who to refer to..whew.. think of ALL the times I went to ER..this could've been corrected so many years ago.

Jan

[Maxine]

It is kind of funny Jan------LOL.

I've been to so many ERs. Now I fear them like I would fear being in the car with a 12 year old boy driving it, not knowing what the heck he's doing, and at any time we could crash into something. Docs have our lives in their hands, and it seems like some of them take it rather lightly.

One example was when my mother was dying---(mind you this was two days before she died), and three different doctors came into the room and were clueless. They had such dumb looks on their face. The first one in her ICU room was a cardiologist, and he said, "hmmmmm, uh, well, it's not your heart".

Then a nephrologist who said, "don't worry, once that nasty little tumor in your bladder is removed, your kidneys should start working again."

After this the Urologist came into the room and said, "hmmmm, you lost over 50 pounds. Oh dear, that's a lot of weight."

After this my Dad and I went to the cafeteria to grab something to eat, and when we got back the Urologist motioned for us to go into a small room with him. We went in, and he said, " I have very bad news, your wife and mother is full of cancer." Less then 48 hours later she passed away. She had about 3 hours of hospice care. After they gave her the first dose of adequate pain meds, she decided she wasn't going to take any more chances apparently, because she died right after that.

The Urologist said he looked at her last CT scan and said her whole abdomen was infiltrated with cancer, and it also spread to her lungs. Too bad he looked at the CT scan 8 days after it was done, as they had this poor dying woman in rehab trying to build her strength for surgery to remove the "small tumor". They were also cutting back her pain meds because they thought she was becoming too dependent---------(ummmm, I wonder way). She was dying, and they had her in rehab!!! This was the last week of her life, and they were flopping a dying woman around like a piece of meat. I'll never forget them trying to get her to comb her own hair, and she was too weak for that. They were having her dress in her normal street clothes=====my God, she was losing her mind she was so sick. One night she asked if the mall was outside her room, and asked when we were going out there.

Last night my husband and I went to my Dad's house to pick up their bedroom furniture, as my Dad wanted us to have it because he's selling the house. They only had the new furniture over a year---my mother loved it. I feel weird having it. During the move, I picked up all her medical records, as I told my Dad when I get some strength I'm reviewing them to see what went wrong. When I'm done with them, I swear that hospital will be naming that "new cancer wing" they're so proud of after her. This is the worst neglect I have ever witnessed.

When I found out I had POTS, I had already started to feel a little better before I was diagnosed. I read about how other POTs patients were treated so terribly by the medical community, and this is when I formed a local support group with another person who didn't have POTS, but her husband had a form of ANS dysfunction. We had the group about 3 years, and heard many sad sories of docs being dismissive, and even abusive. I still have not heard anything so insane as what happened to my mother---------------------ALMOST, but not quite. I have heard some doozies that came pretty close.

Obviously things have progressed for the worse with my health, and I can't work in a support group consistantly anymore, but I still hear the same old stories over and over again.

How can you have respect for doctors who seem dumber then a box of rocks? I guess our bad experiences make us a bit wiser, and more guarded on who we let take care of our medical needs.

We must advocate for ourselves, and if some of us can't, find someone who will.

If something ever happens, and you suspect some kind of malpractice or criminal intent, never, ever have medical records subpenaed by an attorney. This gives them time to destroy incriminating records. Any collection of records must be collected with surprise search warrent if the attorney thinks there's a probable cause. If there's exigent circumstances in which there may be imminent destruction of evidence, records may be obtained without warrent. Of course this would be in extreme circumstances in cases such as direct abuse by a physician, malpractice, or criminal intent.

We can't live being paranoid, but it's good to know some things in advance. Better to be informed----just in case..........

Maxine :0)

[Guest tearose]

Your story of your mom Max is so disheartening. It is so sad when we are reminded of how fallible humans can be. It is because we want to trust our doctors and believe they can and want to help us that we go to them.

Most unfortunate when Doctors do not take their "healing" profession to heart.

May we all be blessed with at least one good doctor!

[Maxine]

This is so true Tearose.

Fortunately I have learned enough from the bad experiences, and know enough to avoid the bad docs.

I have a few good docs, but still trying to find a good neurologist who understands the connection between spine instability and EDS.

Dr. Grubb is right around the corner--(about a 1/2 mile away), and thankfully I don't have to worry about a Doc for ANS issues. It's difficult to get an appointment------------even living this close. My ANS symptoms are about the same, so I just deal with the waiting.

I do see a neurologist who works in the same hospital as Dr. Grubb, but not for ANS issues. However, she doesn't seem dismissive about dysautonomia. She doesn't have a whole lot of knowledge about the effects of EDS on the spine and neurological system. She has a decent bedside manner, and doesn't seem to be full of herself.

I don't really see her a whole lot, as there isn't much she can do because of her lack of knowledge on my specific condition.

Neurologists seem to be the worst, and so full of thier own egos that they can't get in that place where passion for helping patients is at.

Maxine :0)

[mjan]

{{{ MAXINE }}} Sweetie.. I am sending your a very gentle hug...

I am so sorry for all you and your father went through.. and your poor mom..breaks my heart. See I WORK in hospice.. so I know what you mean. There are some very aggressive type of cancers and frankly many docs are just not trained and even excluded by their discipline..but dang could they at least CONSULT with someone? And when a person is declining they test and test..treat and treat and the person only gets sicker and weaker. But we do work with great oncologists who get this and refer to hospice so the patient and family can decide what they want to do..which for most is comfort measures only. Cancer is just a nasty nasty monster!! AND rehab is supposed to get you UP.. dressed.. make you eat.. push push push.. I know we have patients in nursing facilities and I advocate for them all the time. Its not wrong.. its that their proceedures and instruction are different than when someone is sick and dying. A good staff RN can pick it up sometimes and let the doc know.

But folks ...we and our families need to have an advocate or be our own!!

So I am NOW rewarded with the most caring aggressive set of docs... so lucky. I PRAISE them.. they blush!! AND they are all so YOUNG but aggressively pursue to find out what is wrong with me ( I have multiple problems) and not abandon me..AND..they don't push me onto things I do not want to do...let ME decide and honor my wishes. ( I am old..been there ok?)

So..hang in there guys.. there are some docs who try at least..listen..and honor your wishes.

Warmly Jan

[erikainorlando]

Hi.

Maxine...wow I am sorry. I wanted to chime in too. Just a little of my POTS story....

I started seeing this PCP last Oct. after the nurse practitioner at work gave up on me. I had a flu in Sept. and wasn't really better...very weak...felt so ill. I kept getting shots of antibiotic and steriods and still would try to work. I would work for 3 days and go to bed for 2. The new PCP thought I was a hypocondriac. She did some blood tests and since there wasn't anything wrong she told me I was just worried as I had Guilllain Barre in 2001 and this was post-tramitic stress disorder etc. I told her I had my masters in counseling psych and didn't think she waas right

Anyway...I went to the hosital a few times in Dec. was admitted. My hr was high normal but I was SITTING. Even sitting tho it was around 110...which seems to me kind of high. Anyway...I had a CT scan of my sinus and neck as I said I had had a sinus infection to kick this all off. They saw an abnormal bone abnormaility in my cheek bone. This was 2 days before christmas. They thought it was sinus cancer or bone cancer... My PCP stopped in (rather her partner) and told me I had an obstruction in my windpipe...I told her the hospital doc said I had a bone mass. She lookedd confused....so she went out to the hall came back and told me I had both! Then she came back and said she made a mistake and there was no obstruction in my windpipe.

The hospial doc got confused and told me it was the right cheek...but the CT report said it was the left. I had a previous CT scan done that didn't even show anything (but htat was an error....the radiologist said he was sorry...) They let me go home Christmas Eve....because there wasn't an ENT to help until after the holidays. I couldn't stand for any length of time....but I thoght it was because I had cancer.

Jan 6th I had sinus surgery...they went in thru my mouth...took a quarter sized peice of bone out and then told me it was only dysplasia...propbably had it most of my life!! But I was still so sick........now with a mouth full of stiches...that was the all time low for me!

Weeks later I went ot a pulmonologist whose setup is to have you stand and to your vitals before going in the room..my hr was 156. Finally they got onto it...but it was awful....I have loss of sensation where they did the surgerry in my cheek..but I don't have cancer.....thank god...but no one could get anything straight...I really think thre are too many specialists...not talking to one another...or maybe they are too busy...but could they get the right side of the cheek correct?

Just wanted to add that...my own true experience at my local docs and hospitals...beloieve it or not.

Erika

[janiedelite]

Hi Erika,

I just wanted to chime in that I was told cancer might be the cause of my POTS symptoms last year, too. I was going to many doctors, various specialties, and they kept just referring me to each other. Finally the rheumy said that leukemia or blood cancer could be causing my problems and sent me to a hematology oncologist. Wow! Was that depressing! We saw him for probably 2 months until cancer was thoroughly ruled out, more symptoms popped up, and they realized I had a neurological condition. My husband and I remember those 2 months as being so filled with dread that they would figure out what was wrong with me and it would be a horrible terminal illness.

Once we actually got the POTS diagnosis from an autonomic neurologist, we were thrilled! I told the doctor, "So I only FEEL like I'm going to die!"