Autonomic Results In

[erikainorlando]

I put some of this in my previous post but thought it might need it's own post...most of you know I went out of state to a specialized autonomic specialty center. I am with holding the name to be polite.

I don't want to offend anyone who has been helped greatly by the insitituaion if you know the place I am talking about this was just my experience and I went with a lot of complications so this all has to be considered but...

Results.. I have POTS, mild parasympathetic deficits....abnormal cadiovagal response....whatever that means..

Abnormal Sweat test. may be consistent with patchy periperal small fiber dysfunction....What does this mean?

Blood volume Study - plasma levels mildy increased but still normal. Red cell volume mildly decreased but still normal

Now my biggest concern were my problems walking. I said I had my POTS issues but they were palling in comparision to my recent inability to walk...so her call was that my ambulation issues were said to most likely be psychogenic and I should see a psychiatrist! Why would I need to fake anymore illness..I mean really....why..I remember telling them that yes while I struggle with all the POTS flushing, diahrea, chest pain...bla bla bla...I am now really just concerned with this horrible weakness...that was broughtt on by standing too long.

I am so offended at being called crazy!! Truely I would love to be crazy if it was the problem! I even asked the psychologist in the hospital if I was off or having a conversion disorder....she said "no...you are probably one of the most sane people I know"....you are just sad scared and frsutrated. But now this is on my medical record and I feel like everyone will view me suspicisously.

Can you believe it!~! So can anyone interpret...can anyone relate....

Thanks,

Erika

[Angelika_23]

Oh Erika,

I am so sorry! You have been through so much and you deserve some answers! I remember early on in my diagnostic stage, I had a neurologist, cardiologist and my PCP at the time all said my problems were in my head. I fired the neurologist and cardiologist and my PCP left and I got a new one. I somehow resisted the urge to send them my positive test results when I was diagnosed later.

I know I didn't make any headway until I went to Cleveland Clinic. They were the first ones (besides my local cardio) to try to help me. I don't know how far away you are, but maybe that would be an option for you?

(((hugs)))

Angela

[lieze]

I guess at this point for me I'd say if a psychiatrist could give me my life back bring them on!

lieze

[Christy_D]

Several doctors before my son was diagnosed blamed it all on anxiety. Once he was diagnosed by a cardiologist(who still didn't know much about it), they still wanted to blame it all on anxiety. My son is a mellow as they come, so I knew they were wrong.

We finally decided we had to go to Cleveland to get help. We go to Case Western University Hospital. The first thing they told my son was, "this isn't in your head". They kept reinforcing this, to let him know it was definitely a physical problem. We travel 9 hours every 3 months, and I don't mind it, because of the care and great treatment they give my son. I just got fed up with every doctor that was local. They weren't interested in evening reading anything I had, close minded.

[lrcaraway]

I don't really know you Erika but I would be really frustrated too. Your thinking finally I am going somewhere that knows what I am dealing with and you get the same old stuff you've been getting by doctors that just don't know anything about dysautonomia. And traveled a ways to get that treatment. From what I understand, and forgive me if I am wrong because I am really new to all this, this is why people go see Dr. Grubbs. He really explains the testing and helps get you started on a treatment plan. Don't forget we POTS people are really strong. Simply, because we are so desperate to get back to normal we are willing to do anything to make it happen. You know walk on coals, whatever. Think positive. At least now, you DO have some results to tests. Next step, find someone who can explain it.

[juliegee]

Oh Erika-

You KNOW how I feel about this. I am livid with you. Psychogenic, my @$$! To me this is in direct violation of the Hippocratic oath. If a doc can't figure something out... YOU are emotionally weak or mentally ill??? THAT does more harm to an already frightened and terribly sick patient.

I pray you are on to REAL help and want you to know that my heart breaks for you. We believe and love you here. Keep posting as you can.

Hugs-

Julie

[lmt033167]

I am so sorry you had to go through this, it's similar what I went through when I went for my SSDI phych eval and told I should be in a mental institute; had another mental disorder and not just suffereing PTSD or depression.

Well yeah we're scared and frightenened, some dealing with emotional issues because we fear our health is deteriorating and something may happen to us. I think we all know our bodies best and if we say we're haivng a problem walking, standing, talking drs should take our word for it - they need to walk a mile in our shoes and see how it feels.

This kind of treatment infuriates me and I would get another eval to show it wasn't just psychogenic and ask them to correct your records.

[erikainorlando]

Lisa - how do I get them to correct my records?

Guys - additionally....at a minimiun what do the other tests indicate...i.e. the sweat test. Peripherial small fiber dysfunction..nk yo?

Thank you so much!

Erika

[issie]

Erikainorlando,

If you went to AZ and this happened to you, the same thing happened to me.

The neurologist said my inability to walk or get up, my shakes etc. were all psychogenic. Come to find out that was one of her studies that she and the psychiatrist were studying and they wanted me to be a part of their studies. Well knowing this wasn't true, why would I participate in THAT!!!!! (They wrote a lengthy medical paper on their impressions of what conversion disorders and somatoform disorder symptoms are. This is for all doctors to read. I was able to get into the site to read it.) **Just as a side note ** If we didn't have the POTS as the explanation, it would sound like this could be the problem.

She hadn't even tested me and comes in and says that's the diagnosis. She was the first doctor I saw and no other testing had been done. To make a long story short, POTS and Ehlers Danlos was the explanation for most all my problems. (There were a few other explanatory things too.)

Even after her colleagues explained all my problems by other (scientifically proven) diagnosis --- She still wouldn't change her diagnosis. Or acknowledge the POTS diagnosis -- of which she questioned.

I went as far as I could to get my records changed without going to the State Government of Doctor complaints. They included in my chart my request for medical change, their response, then my rebuttal these will go out with all my medical records showing that her diagnosis should be superseded by doctors findings after her OPINION. I decided, I didn't have the energy to carry it any further.

Besides, I now know what is wrong and feel that all my puzzle pieces have been put together. Now, I just need to find a doctor who can help me figure out how to treat these things I won't be returning to that Clinic for treatment, as they just diagnosis you and treatment is found elsewhere. I'm truly thankful for my wonderful pivot doctor--SHE WAS THE BEST. Very through and helpful. But as for neurology ---BAD EXPERIENCE. No help there.

I even went so far as to offer her one of the new DINET videos, she wouldn't even accept it. I copied all the information I could find to "Prove my case", and she wouldn't even consider the evidence. Very closed minded and convinced that her OPINION was the only correct one.

I hope no one else with POTS goes to her, because I'm afraid that she will do the same to someone else. You can check out a doctors ratings before you go to them. I really advise you to do that. It's not always completely accurate, but at least you can get warnings or praises from other patients before you decide whether to trust your life to them.

[erikainorlando]

Thank you.

I am trying to not let her get the best of me and am in the process of writing a letter that outlines what my problems were and that the POTS can't be explained away as part of the Guillain Barre as I was fine for 7+ years inbetween.

My doctor is convinced I have a movement disorder causing my tremors, shakes, etc. They are now saying that my inability to walk is due to the truncal tremor (very rare). I am on a lot of meds that slow down the CNS and it really helps. Walking again but I keep in close proximity to a wheelchair just in case!!

So now I am to go to Neuromuscular at MAyo in Jacksonville. I am concerned. I don't want anyone else thinking i am crazy. I wouldn't even care really if that was the fix...but it won't fix it!! I think I should be going to Minnesota to the autononmic dept. or at least to the Movement Disoder folks in Jax. but who knows. I just don't want to be dismissed. Boy...dismissed by a famous tertiary care center..now that is saying something, huh??

Just trying to keep the faith over here. How common are tremors and spasms in POTS? I don't here too many comment on them...

or of an underlying movement disorder causing the problems... and how exactly do I get then to belive me..

They see all the nerve damage....but they just blame it on the Guillain Barre.

[firewatcher]

Erika,

Tremor was my worst symptom. I had dealt with the tachycardia and greyouts for years and didn't think anything of it. When the tremors started, I got scared! I KNEW I wasn't doing it to myself subconsciously, because the tremor had taken my passion and career. My neurologist tried Klonopin for my tremor (which is postural) but it helped my headache. Then he tried Propranolol and I realized that my HR wasn't galloping off into space all the time. Good luck sweetie, I'm praying for you!

((((((((((((((shaky hug))))))))))))

[vemee]

You sound like a good candidate for the program at The National Institutes of Health that examines people with rare diseases or who have conditions that are hard to diagnose. This program is hard to get into since there are so many people applying for it but your case should make them at least consider you. I applied in 2008 and was turned down. Their website should have information, I am sorry I don't have the link handy. You have to get your doctor to put together a package on you to send them. There was a show on tv a couple of months ago that showed what happens in this program. You are examined by a team of specialists and they try to figure out what is going on with you.

As far I know it is almost impossible to get doctors to change their records on you unless they are open to being convinced that they are wrong. It has been my experience that doctors who are quick to blame the patient have ego and control problems and will not go back on their diagnosis. So what you have to do is go to nationally ranked specialist in the fields and get them to examine you and have their diagnosis on record to overturn the local yokel doctors. I know you have been to Vanderbilt and are going to Mayo in Jacksonville so that should help a lot. Tell them what happened but don't tell them about the psych diagnosis unless later on (several visits later) you feel comfortable. When they diagnose you with something have them spell out the effects of the diagnosis in writing somehow show you can show your family that your symptoms are real. Also ask them if your symptoms indicate that another medical specialty should get involved with them.

I know several people including myself have had our symptoms written off as psych problems and have had demoralizing results from that happening.

[Noreen]

You sound like a good candidate for the program at The National Institutes of Health that examines people with rare diseases or who have conditions that are hard to diagnose. This program is hard to get into since there are so many people applying for it but your case should make them at least consider you. I applied in 2008 and was turned down. Their website should have information, I am sorry I don't have the link handy. You have to get your doctor to put together a package on you to send them.

Erika-

I put the link in a reply six weeks ago or so when you were going through so much.

I tried to find it but am not adept at the search feature. Perhaps someone else could locate the post.

hope today is better,

noreen

[issie]

vemee,

I really liked your reply. It would be nice for those larger, well known medical establishments be expert in their assessments. But, it was one of these that I had the issues with the Neurologist. Just because the doctor works at one of these doesn't mean that they won't be closed minded and as you said open to be proven wrong. I found that ego and control played into this --as you expressed. It didn't help that she and her colleage were in the middle of trying to establish themselves as experts in conversion and somatzation disorders. It was a no win situation. They couldn't back down because it would undo their "expert" opinion of what to look for to classify someone with this disorder. They couldn't allow the POTS diagnosis, because then all the people they had so neatly put into this box had to be reevaluated. They didn't want that to happen. So you just, write off that unfortunate experience and realize that you've had more doctors confirm the POTS and associated components connected. Don't take it personal, and realize that not everyone will be treated justly or fairly. It's not the end of the road. There must be doctors out there who do understand this complex illness and are willing to look beyond!!!!! I have yet to find one. But, I just recently moved to AZ and hope to find one, SOON! Anyone, know of anyone here?

[vemee]

issie, you are so right about doctors at big name places putting ego ahead of patients. I had a bad experience with the local ep guru who even though I had a heart rate increase of over 40 beats he claimed I did not have pots because my bp did not drop. He not only wouldn't listen but was even mocking me. He later told my work that there was nothing biologically wrong with me and tried to pass it off either as depression or trying to milk the system. Like you said all you can do is look for the good doctors and leave the bad ones as soon as you realize you've made a mistake going to that doctor. There are good ones out there but you have to sort through the lot to find them. For any one willing to make the trip to Northern Virginia, I recommend Dr. Abdallah he is listed on the physicians list and is quite caring and listens.

[arizona girl]

It's true about the big hospitals and their research protocols. I've been to UCLA and vanderberbilt. UCLA was specializing in sleep disorders and chronic fatigue, she said go to mayo, but did have me do poor man's tilt for a few months and when I saw her the second time, she said don't let them tell you, you just have pots, there are so many things that can cause it including a small cell cancer. GO TO MAYO, she said. So I went to vanderbilt as they were on my insurance. Their research is all about salt loading and blood volume, and they didn't bother to do a TTT test on me, but put me on there treatment regime. Two years more no improvement, was referred to a new cardio where a TTT was finally done, with crazy readings. Wow, I guess I really did have something wrong and the only thing that was crazy was how my body was acting to standing up.

So everyone be tenacious and keep on moving on and asking for the right tests. Dinet has done a good job of listing what to have done and causes on the main page. This forum is the best guideline we could follow. If it fits with the info here then you will eventually whittle it down to the correct diagnosis. Not that is won't seem like it is taking foreverrrrrrr!!

Making a crazy diagnosis just shows a lazy doctor, ignorant one or doctor who has their own personal agenda going on. But most of us have already started to figure that out haven't we? It's just a shame though the emotional damage that is done when they get it wrong. It's hard not to take it personal and think well maybe it's me, or why do I keep getting doctors who don't really care.

I'm grateful I finally seem to have a good caring group of doctors, but it sure was painful finding them.

[arizona girl]

It's true about the big hospitals and their research protocols. I've been to UCLA and vanderberbilt. UCLA was specializing in sleep disorders and chronic fatigue, she said go to mayo, but did have me do poor man's tilt for a few months and when I saw her the second time, she said don't let them tell you, you just have pots, there are so many things that can cause it including a small cell cancer. GO TO MAYO, she said. So I went to vanderbilt as they were on my insurance. Their research is all about salt loading and blood volume, and they didn't bother to do a TTT test on me, but put me on there treatment regime. Two years more no improvement, was referred to a new cardio where a TTT was finally done, with crazy readings. Wow, I guess I really did have something wrong and the only thing that was crazy was how my body was acting to standing up.

So everyone be tenacious and keep on moving on and asking for the right tests. Dinet has done a good job of listing what to have done and causes on the main page. This forum is the best guideline we could follow. If it fits with the info here then you will eventually whittle it down to the correct diagnosis. Not that is won't seem like it is taking foreverrrrrrr!!

Making a crazy diagnosis just shows a lazy doctor, ignorant one or doctor who has their own personal agenda going on. But most of us have already started to figure that out haven't we? It's just a shame though the emotional damage that is done when they get it wrong. It's hard not to take it personal and think well maybe it's me, or why do I keep getting doctors who don't really care.

I'm grateful I finally seem to have a good caring group of doctors, but it sure was painful finding them.

[erikainorlando]

Thanks guys!! I went to my regular neuro today (nurse pracittioner). She assured me that I wouldn't get that treatment at Mayo...because my neuro is affiliated with them.

I do think a lot of this is just POTS. Orthostatic Truncal Tremor seems to me to be related to standing up!! My body just hates beingupright for any period of time. It will start doing crazy things to get me to stop.

I don't know why tho...

So does it have to be another disease...a movement disorder or can it just be POTS..?? I am so tired of all this...even when I think they know they are more confused and know less about POTS than I...I guess all my residual nerve damage from Guillain Barre...and that POTS is frequently a residual of Guillain Barre clouds the issue.

I just want a life back...at this point I'd take psych....just fix me!

[issie]

erikainorlando,

Good LUCK!!! Keep me posted because I have those tremors and gait problems too. I'd love to find an answer for this. I have the tremors sitting too. So, in my case, it's not just standing or walking that causes the issues. At times, my legs won't pick up. I'll go to get into a car and I'm frozen. They won't pick up. I turn around and sit down. Pick my legs up with my arms and get in. Very frustrating!!!! My tremors are worse when I'm under pressure or stress or very tired.