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I think I mentioned in another post that one of the doctors in my year of seeking diagnosis for what seems to be hypermobility syndrome with concurring dysautonomia ~ a neuro specialist ~ saw fit to say he believed my case to be psychological not neuromuscular. Well after that I got the hypermobility syndrome confirmed at the same medical center and was going to leave it at that (yes it's not neuromuscular but it is not psychological). Next happens all these blood pressure, pulse, and fatigue issues and I run it by the local neuro who says it's definitely dysautonomia likely from the collagen issue of hypermobility syndrome - please continue on with cardiology for treatment. But because the neuro at the big university medical center said psychological I should definitely see a psychiatrist to somehow prove him wrong. I countered with I feel fine ~ no issues currently ~ the neurologist simply said "counseling can help fatigue" which has nothing to do with psychiatry. She then says that it's one and the same and that I need to see one so that if anyone looks at my records they can take me seriously. I say entertaining going to a shrink when I don't need one is suspect and why would I do that - what sane person would? She says you should just do it for completeness. I then began to think she was the one that was daft ~ not I ~ even though she's a really nice person. She also thinks I should go to a different big medical center and see their neuromuscular specialist who is one of the world's best. I asked, "why?" if we are sure I have hypermobility syndrome with dysautonomia? She said just to check it out for completeness.

So what do you folks think? She suggested I do this back in January and I didn't because I thought it was ridiculous and a waste of money and skilled doctors time and energy as well as mine. Now she called me up just because I sent her the genetics report and had me come in. To what? Feels like being brow beat into doing something I have no desire to do. Would love to hear your inputs on this..... Is she just being pushy because she was insulted I didn't do the two things she suggested? For the record ~ I'm "normal" lol.... No psychiatric diagnosis ~ appear normal, act normal, work in spite of this disability, have worked very hard at figuring out what's happening with me etc....have family and friends who laughed at the idea of me having a psychiatric cause to my physical problem.....

I considered it a badge of honor to be told it's all in my head (quite typical of difficult cases) ~ But now I think I'm being hassled and not liking it one bit!

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I was told too at Cleveland Clinic that anxiety is a cause for fatigue.

I'm kind of in limbo here I would like to have some answers but don't feel as if I have the resources to pursue it right now.

I have four kids that need to be taken care of, I'm not really comfortable just taking off in the car on my own, I'm half afraid of tests and all the things they'll want to do to me, and then there is the financial. We had really good insurance in the past. For my ablation it covered all but $200 of my $65,000 bill but now we have a $500 deductible and a 70/30 split. So I could get a pretty good bill going and then what will it really change for me. What treatment is there? And how will it change my life?

Lots of questions and I just don't know even as serious and frustrating as it is whether it's a priority right now to pursue it.

Completeness would be nice but is it practical? And do we want to put ourselves through that and then have to pay for it when it might not change things much for us.

We might do better to go get a massage.

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In an illness of such complexities--I personally, don't think we can have complete absolutes. Do we really need them? Will it change or help anything? Do we need to put ourselves through this and spend money we don't have? That's an individual decision. But for me, if I have probabilities and there is nothing scientifically that can be done to reverse or change it-- a diagnosis of probability is enough for me.

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Hi,

I see a shrink because I have mental illness.

HOWEVER, if you feel no need to see a shrink I agree with you. Why should you?

I"m in Australia and once a mental diagnosis is written onto your record many doctors will find a way to put every symptom into the 'all in your head category.' It was hard for me to battle at first. I made no headway and my symptoms of dys were dismissed for way too many years before my symptoms increased in number and grew so severe that doctors could no longer deny I had a physical problem.

Ironically, it was a psych I was seeing a few years ago that knew I 'had something else wrong with me. other than my mental illness.'

However, I've come a long way and am no longer ashamed of my mental illness and, indeed am very lucid about it. Not to say that at times it can be very hard to manage but I get there.

If a doc refers to it when I am there to see him/her about another problem with dys, I will nod and say yes, there is that component that may be partially relavent to the health situation we are talking about BUT it is not the whole story. Let's get on with it. That pretty much puts them in their place.

Latest statistics in Australia has shocked Australian people (and politicians too) -- 15 percent of Australians have some sort of mental illness. My guess would be it would be the same in the U.S. and other western countries, if not world-wide. Those statistics also inform me that there is a good chance that there may be 15 percent of doctors with some sort of mental illness.

Not long after I was diagnosed with POTS I began to question that specialist's diagnosis even though he is a very well respected diagnostician amongst his medical peers. I remember ringing my psych -- a new one as my old one had moved to another area and it was too far for me to travel to see him -- when I started to wonder if somehow I'd managed to dream up an illness in my head that I'd never even heard of - I didn't even know there was an 'autonomic nervous system' in our bodies let alone that it could become dysfunctional. (I knew about the CNS, of course. It comes into play with a lot of psychiatric stuff). Anway, when I rang my psych I asked him did he think that perhaps I really didn't have pots but instead had some sort of somatoform disorder (the most well-known and misunderstood is what lay-people call hypochondria). He asked me to give him a few days to think about it and he'd ring me back. Which he did. He said, "No you don't have a somatoform disorder, you have POTS."

BTW, I feel great empathy for hypochondriacs because they suffer their own sort of ****, too.

However, I've gotten off the point in my answer to you. Don't go seeing a shrink if you believe there is no need. I equate doing that with, say, going to a podiatrist when there is nothing wrong with your feet or a dermatologist when their is nothing wrong with your skin. If your head is fine why see a shrink?

Having said that, I do think some emotional support from shrinks can be valuable for people who get little or no support from other people around them ie family and friends. I see my shrink for that reason and because I have a mental illness.

I have a reputation for writing long winded emails. Sorry, it's brain fog. My 'edit button' doesn't function. Can't even find it at the moment.

hugs to you and follow your instincts.

blue.

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I must also chime in and say that it doesn't seem to me either that you are in need of a psychiatrist.

I will, like everyone else, say that dealing with chronic debilitating illnesses can be very difficult at times, and that it's great to have someone at least somewhat objective to vent to. I have a spiritual director (the same one I saw when I was discerning a vocation, not that I've completely counted that out, but for right now, I need to get a better handle on how to deal with these illnesses if I am ever to be able to live in a convent). He's very kind, understanding, uses alot of humor, and best of all, he's a priest, so I can get absolution afterwards (only if what I discussed would make a worthy confession, ie, only if I've at least mentioned everything that I can think of that needs to be confessed). :D As a Catholic, for me it seems that a very thorough confession is worth more than a year's worth of therapy sessions. I especially like the fact that at least my spiritual director seems to have a very holistic approach to everything. He encourages me to see another doctor even if I'm sure that this one is a dud too (I said that about my current cardiologist before I met him, and Fr. convinced me to see him) and is concerned with how well I'm managing with the pain. He also acknowledges psychological and, of course, spiritual needs. When I've had a pity party for too long, he reminds me that I'm not dead yet, so I'd better act like I was living (in a very charitable and loving, yet in an "open your eyes, silly" way :D). In any case, I guess what I'm trying to say is that seeing a counselor isn't a sign of "crazy" (whatever that is :) ). And I have to say having an outlet to talk these things out to someone, who if they don't understand, at least try their best to (I'm somewhat tired of answering questions, but I'm glad that he asks them), has been a great source of healing for me.

Now, as far as the neuro goes... That's a bit out of her reach, to "brow beat" you into seeing doctors that you don't want to see, and from the sound if things, waste both your and their time. I would suggest (but this is just me) if she brought it up again, remind her that she works for you, not you for her. I know if that happened to me personally, I would be looking for a new neurologist, but perhaps I just have a very low tolerance to such Mickey Mouse $@**!%^#, especially when it comes to anyone in the medical field. You know your situation better than I do, but I would suggest at least thinking about if changing your neuro is something that needs to be done.

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Thank you all so much for your quick response to my query! That means a lot..... It never hurts to do a reality check when someone is facing something that finally begins to seem kind of clear-cut ~ suddenly challenged out of the blue ~ by a person in an authority position. So I thank each of you for your thoughts ~ I do value them! I've read your comments a few times to let them sink in ~ I read lot's of wisdom through what you each have been through....

You each raised very important aspects of my quandry & to read your thoughts in black and white is so helpful ~ it's validating. So for now I'm going to just take this one day at a time.......I'm saying no to psychiatry eval and I'll ponder this other neuromuscular appt she wants me to go to ~ His approach is to do a muscle biopsy and repeat all testing and imaging you've had done anywhere else as he wants things his way. That sounds like a lot of money as he's out of network ~~ and I'm in medical debt right now already. I wouldn't mind speaking with him though ~ Yet don't want to be caught in the web of saying no to tests he orders -- showing non-compliance. So I probably should just cancel it ~~ I'll have to pray on it and see what comes up to do .... then do it. Right now it's these cardiac issues that have most of my attention ~ that and these joint replacements that are acting up quite badly.

It really disturbs me this young 'wet-behind-the-ears' dept. head having the nerve to go beyond his scope -- stating that in his opinion my weakness or fatigue is not caused by a neuromuscular problem......but by psychological issues. If I think about it too much it's pretty darn maddening. How would/could he possibly even KNOW about someones supposed psychological issues in a one hour physical exam testing strength, gait, etc ~ when he sees likely thousands of people? And if he knew what his careless words do to a patient that has real health issues of the medical kind to be dismissed or not believed ~ then dump upon them a whole new world of problems called "psychological" problems! He may be book smart ~ or just lucky ~ but if he keeps up with this kind of behaviour ~ well his future may not always be so bright ~ someone will be harmed through his dismissiveness for things he doesn't know or understand.

I do try to keep faith ~ and that helps me when I feel cornered as I did this afternoon ..... You are so much appreciated so a big thank you!!! Hope some day I can look back at this and laugh ~ & maybe help someone else through my story :-)

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I had the same thing happen to me from a very prominent medical clinic. Be sure to either request them change your records or do an appeal letter with the reasons for you not agreeing with the diagnosis. If you have this included in your medical file also request that a note be put on the doctors records that your letter has to be included in any medical release. That way you can show that other test/doctors disagree with his/her diagnosis.

In my case, the doctor didn't believe in POTS, despite it being her colleages that diagnosised it.

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If you do not feel you need psychiatry don't go. As mentioned earlier once a doctor sees that you are seeing a psychiatrist they will say all your problems are psych. Anxiety and depression do cause fatigue but so does a long list of other conditions. Can you imagine a cancer patient being told that their fatigue is because they have mental problems. I went to a psychiatrist in 1994 because of fatigue, brain fog and other pots symptoms; I had not been diagnosed and was told by doctors that there was nothing physically wrong with me. Prozac was being hyped on tv as the cure all for all of my symptoms (I did not know my standing heart rate was high at the time) so I went to a psychiatrist. Worst mistake ever; I had a reaction to either the of antidepressants or another med I was taking and then I did have anxiety and depression for real. Other things that ruined my life have also occurred due to my mental health adventure but I don't want to turn this into a vent.

Over the years, there have been many people on this board who were told they had mental problems causing their symptoms: it is an easy out for the medical doctor. If a doctor does not believe you, especially when you have the evidence that your problems are physical then you should leave that doctor and find another. As far as getting your medical records changed, I don't know how you can do it except to have enough evidence that your problems are physical. I don't know how electronic medical records will affect our efforts to keep misdiagnoses out of the hands of doctors we don't want to see them.

Even though my experience with mental health has been a bad one, I do not want to discourage anyone who needs help from going to a mental health professional. There are always those in any system who have had bad experiences no matter how good the providers are. Also having a chronic condition like we have is in itself depressing and we need support; if the only way to get support is to see a counselor then do so. I did see a psychologist about adjusting to a chronic disability and found it quite helpful. She understood what I was going through since she had fibromyalgia.

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The specialist is a neurologist and not a psychistrist - so his opinion on psychiatric illnesses is questionable. he thinks because your condition and POTS in general exhibits a number of symptoms that are quite similar to GAD and Panic disorder that this is your underlying problem based probably on limited knowledge of these conditions and their etiology.

On the other hand its possible that sustained sympathetic overactivity can contribute to the onset of mental illness - as it has been found to in other diseases such as Graves disease/autoimmune thyrotoxicosis.

In pots the sympathetic excess is apparent orthostatically irrespective of mood.

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If you are happy with the person that you are and cannot afford a psychiatrist, then don't go! I have had horrible experiences with psychologists looking for a non-existent, deep inner angst (high school, family counseling and divorce counselor.) Before I had a diagnosis, my former friend and family doc said he would no longer see me till I had a full psychiatric evaluation, fortunately he picked a really good one. Psychiatrists have to be medical doctors first, before they go on to be mental doctors, and this one took one look at my chart, gave me a quick "interview" and reassured me that this was not "in my head," that mental illness can't cause my symptoms. He then made me an appointment with HIS family's neurologist. Not all shrinks will be this good. Mental illness is an easy out, particularly for a doc with no training in it.

Because so many of our symptoms overlap with mental illness (syncope, tachycardia, anxiety, etc.) and we are a hard case to figure out, doctors will continue to try to lump us into the mental illness category, just to have any diagnosis. Unless that doctor IS a psychiatrist, or has many credentials in the mental health field, I would question their "mental illness" diagnosis.

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Bless you all again ~ Very valuable your insights!

I'll ponder these things today and see what I come up with. It's so true how these doc's are only human and full of human frailty ~ yet we go to them for expert opinion and advice -- semi-trusting ~ sometimes we get a 'hit' and things move forward ~ sometimes we get a miss and can spend virtually countless dollars and hours undoing the damage of a miss if it's big enough. Psychiatry has some hot shots that are really talented, use medication sparingly and appropriately and will direct patients to therapy or counseling for psychological issues and to doctors for medical issues ... some even provide that therapy without meds if appropriate ~ the psychiatrists of old! But in today's climate it's cheaper for insurance companies and a doc to write for a pill than to address the issues causing symptomatology and prescribe needed trauma therapy or whatever specific therapy is needed for healing.

I know hypermobility syndrome is so little known by all my medical team ~ I'm not surprised I had to learn about it myself being a nurse for 25 years I never had heard of it! It's hard to not have one person knowledgeable kind of championing my care and directing treatment ~ everyone kind of looks at me with a blank stare and say, "what's that?" Add to that this cardiac aspect of dysautonomia that coincides with hypermobility syndrome and the doctors here show they feel as lost as I do and they wish I had an "expert"....

Who is the most valuable member of your health care provider team with dysautonomic issues? This local neuro says she only deals with it for patients with demyelinating issues and some other cause which I can't remember ~ but if it isnt' those two things causing it ~ she claims to be out of the picture.

Is she correct? Or do some of you see neurology for your care? I think if it's warranted maybe I should see a new neurologist locally ~ but my pain guy (he doesn't know about this dysautonomia thing yet) said to stay away from them because I'll only frustrate them ~ my diagnosis is one that stumps many.

Do some of you have cardiology as the main diagnostic person who takes care of your meds etc? Because if mine is uncomfortable as he's semi-verbalized ~ perhaps I should ask him if he can learn from his colleagues who might be better suited ~ they are so much more comfortable when in the zone of their expertise.......Of course I'd have to be very tactful in that lol....

I guess I'm kind of confused right now ~ I like the idea of gathering data for a letter to the one guy asking for his consideration for an add-on note somehow retracting his ideas ~ I may ask the ones in the genetics dept. how to handle this as well ~ It's all as clear as mud right now. Maybe if I can find someone who's willing to do a tilt table test and actually handle diagnosis (by my cardiologist or hiring a new one) ~ they can help me....

I have enough problems now without adding a psychiatrist to the list ~ you've helped me to see this and helped me in other ways as well ~ thanks so much!

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~ I may ask the ones in the genetics dept. how to handle this as well ~ It's all as clear as mud right now. Maybe if I can find someone who's willing to do a tilt table test and actually handle diagnosis (by my cardiologist or hiring a new one) ~ they can help me....

You might ask the diagnosing doc for your hypermobile issues/genetics dept. for referrals. If there is a neuro and a cardio that THEY trust to know about the complications, see them! I never see a doctor "cold" anymore. I only see referrals from doctors whom I trust and know what my issues are. If there are studies for hypermobility and cardiac issues, look at the names on the studies; I'll bet the same few keep coming up. Those are the docs to see.

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First I must say that I love your name "nowwhat'. I wonder if anyone on this forum has the name 'whatsnext'.

Last year I was diagnosed with insomnia. I knew this and was looking for help so was told I should see a sleep psychologist. Instead my GP sent me to a psychiatrist. I wasn't pleased but thought, 'what the heck. I'll give it a shot'. I walked into a huge room filled with teenagers filling out forms. I was greatly alarmed and distressed and wondered, 'are there really so many young people in need of a psychiatrist's help?'

I told the gal in charge that I was supposed to see a sleep psychologist. She assured me that I didn't need to be there and the psychiatrists there didn't deal with insomnia. I told my GP about this but still I wondered if it was in my file that I needed the help of a psychiatrist. I was told that this follows you wherever you go and I'm now with a new doctor in another city. I've said nothing to her.

I have a brother who was told for years that all he needed was to see a psychiatrist and he resisted for years, knowing that his problems were physical. Finally he said, 'what the heck, why not go and make someone happy!' The psychiatrist told him he didn't need to be there and my brother was ecstatic because he had proved the doctors wrong. Eventually he was diagnosed with Parkinsons and he's doing wonderfully well with the right help.

Mary P

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(NOTE: I am in the UK, so I got all this 'on the NHS' so finance wasn't an issue)

Just wanted to add that I have been in almost exactly the same situation. Got diagnosed as psycho - then they realised it was EDS/HMS. Got more symptoms and diagnosed as psychosomatic (on the basis that I wasn't depressed by my EDS/HMS and was still working????) then they realised it was PoTS...but by then the psych had already decided I needed an inpatient stay in a psych ward of about 6-8 weeks.

I really didn't know whether to go or not. To put myself through something so hideous just to please Drs, or to walk away and take the flak and have every future Dr question me and tell me I'm in denial?

In the end I decided to go for my pre-admission assessment (bear in mind I was already diagnosed as having 'psychosomatic' symptoms. this was aimed at 'treating' said psychosomatic problems). I had great support from friends and family - they all thought it was nonsense, and I got permission off loads of them to use them as references if I needed to. On my Dad's advice I went in and was completely honest. I mean completely. I didn't try and persuade them that they were wrong, I just told them how I felt.

Psych: "so do you try doing anything for yourself"

Me: [look. pause...]"Oh. You are serious? Of course! just cos my heart rate is off doesn't mean I'm going to voluntarily spend the rest of my life doing nothing! - I just have to pace, do things a little at a time etc. And some stuff I can't do so I do PT and little tasks to work towards the bigger ones." The blank look of complete disbelief at the question seemed to break the ice and my assessors went from "pity and supportive gently gently" expressions to "have a bit of a chat, relax, say things how they are" and repeatedly saying "we really don't think you need to be here!"

Psych: "So, how are you feeling?"

Me: "Cross and fed up. I feel that every time I start to get a handle on my medical stuff, someone says its all psychological and sets me back again putting pointless hospital stays infront of me when I could be building up my hours at work and getting on with real life! I have just found out I have PoTS as well as EDS and I need time to come to terms with that and work out the best way of handling things. With all due respect the last place I can get my head round physiological issues and how to sort them is a psych ward! By all means, if once my PoTS is under control I remain having symptoms then I might need your input, but right now I think it is nonsense, cos from everything I've been told about PoTS it accounts for everything that isn't EDS."

I saw the most senior psych in the hospital and came out leaving her really cross with whoever had said I needed to be an inpatient followed by a report saying I am mentally normal! - I actually have proof that I am sane, which always makes me laugh.

For me it was definitely the right decision to go because now I have that completely off my records. I don't have psychosomatic symptoms.

Before the appointment I wrote a 6 page letter which I never sent to anyone explaining why I thought I was sane, which really helped me to have the confidence to speak my mind without being defensive.

It was the hardest thing I have ever done, but for me it was also the best possible.

Good luck, whatever you decide to do.

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And nowwhat, your diagnosing psych seems almost as bad as mine - I had been told 10 minutes before that I had PoTS. She says "do you know if EDS and PoTS cause slurred speech?" Me: I'm not sure. Her: In that case it must be psychological." - yuh! that sounds like a good diagnostic criteria! Muppet.

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Your story is like 99% of us on this site, my advise is very simple. If your doctor has no idea of what to do, but his corse of treatment is your mental state.....fire them. Once you passed this "test" and went back to this doctor what kind of treatment do you think you'd get then. They were clueless what do before, now the one option they thought they had fell apart. Fire them, move on to someone that will work with you. I went through 30 doctors before I was able to find 3 that are willing to help and run proper tests. Hope you're able to find good medical help.

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There's been lots of good advice given so I don't have much to add other than to say that any doctor looking at your medical records who understands dysautonomia will not be thrown off by the fact that someone along the way suggested a psych cause for your symptoms. I think this is standard in the course of coming to such a diagnosis.

When I was finally diagnosed with POTS, the ANS doc who gave me the diagnosis looked at me with a big grin at the end or our appointment and asked, "Did anyone tell you tell you that you were crazy?" ....to which I had to answer, "yes".

"Well, you're not!" He told me. He said that very few, if any, patients make it to him without hearing that at least once along the way. To him it just seemed to help confirm the POTS diagnosis since it is such a common part of our journey. So the suggestion still stands on my medical record, but I figure as long a I continue to be treated by doctors knowlegable about dysautonomia, it will not affect my care.

Good luck with your decision.

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Thank you all so so much for your invaluable inputs ~ I see my primary tomorrow .... to see where she's at with all of this. If I'm brave I'll tell her what the neuro is insisting upon...... Or I may decide to just share with her my desire for formal diagnosis of the dysautonomia ~ and give her my blood pressures written down.

Great idea to ask the HMS doctors for the cardiology referral! I'll as the primary what she thinks about that as well ~ I'd like to get her more involved in my care ~ I've done all my detective work myself thus far.......as she never seemed to want answers as much as I do for unusual symptoms groups.....

What's so frustrating is the team of specialists I've had to see and that I currently see was created by me~ Yet each of them asks ~ who is the "main" specialist caring for my HMS. Truth is I don't have one. The USA doesn't have clinics that treat this -- and the accompanying symptoms such as dysautonomia just plague you ~ chronic pain ~ plagues you..... You deal with each symptom by the doc that treats that symptom ~ and with connective tissue disorders ~ well your entire body is affected. I do have a primary ~ but she seems to be the least knowledgeable or perhaps just the least interested is more accurate.

I'm so impressed by your answers and caring ~ ~ !!

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