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an update and a goodbye


hayley
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hello everyone and welcome to the new people that have joined.You will have alot of support from the lovely people on here.

Well i thought i would update you.As many of you know i have been struggling with problems walking,balance and coordination problems and cognitive problems.I have had many tests but the only thing that showed up was an eeg which showed slowing.So my final diagnosis has been a conversion disorder.I am due to go into hospital again soon for inpatient therapy.I have been told i dont have pots and have been discharged from my neurologist.

I still suffer the symptoms of dizzyness and tachycardia but not as bad as i used to.I also feel like i am drunk most of the time.

I have to go to see a specialist in cognitive function and have another cognitive function test because i did badly on my first one.

Depression has hit me hard.I am accepting this diagnosis because i cant keep fighting with doctors anymore.Its going to be a long road ahead.I just wanted to update you and wish you all well and try to keep positive.I will not be posting on here anymore.But might stop by now and again just to see how you all are doing.I want to thank everyone for there support and kindness.

take care.

h x

Edited by hayley
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Hayley

Thanks for updating us. I truly hope this is not "good-bye" permanently. I hope you have the correct diagnosis and get appropriate treatment. Too many of us have been misdiagnosed with conversion disorder and other psychological ailments by doctors who don't know what else to do with us. I know how hard it is to keep seeking answers when you are exhausted and feel you have run out of options.

Take care and I hope you will let us know how you are doing.

Katherine

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Haley,

Thanks for updating us! I feel at a loss for words but wanted you to know I'm thinking of you and wish you the best. I too am concerned about the possibility that Dr's still don't have you correctly diagnosed. Depression would be a normal, understandable and expected result of dealing with any form of Dysautonomia and my hope is that you will be able to maybe get some treatment for the depression and then feel more hope and have some strength again.

The best advice I could give you is to trust your instinct and your heart. If you feel the Dr's are incorrect then do the best you can to fight and stand your ground (I know you are already doing this!!). If you feel they are correct then do what you can to follow their instructions to see if you get any relief.

Also, please know that you are always welcome on this board regardless of whether you have been correctly or incorrectly diagnosed. We do care about you and are interested in how you are doing so if/when you are ever feeling up to posting please do!!!

I'm sending good thoughts and well wishes your way and lots of (((Hugs)))

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Hi Haley,

First off, I wish you the best of luck on your journey... For a while docs thought I was having ear problems that caused me to be off balance, etc. but now they think it is the POTS doing it! I hope that you continue to stop bye and post to keep us updated on how you are doing. Goodluck!

Jacquie

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H, if you know in your heart of hearts that you are right and they are wrong, you must nkeep fighting- go to the US if you have to! There are a number of British cardiologists listed on the Syncope Trust website who might be able to help you- go to www.stars.org.uk.

If you think they're right, well then at least you can get the help you need.

But I don't think you believe this is psych, not deep down.

Keep pushing til you get answers.And keep in touch- don't be a stranger. You have my email. Oxfords not far from London- maybe we could meet there one day if you were walking well... (and I was!)

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Hayley, I am very sorry this is happening to you. I have been in the very same place as you. We have to do what we really feel like we need to do in order to accept what is going on with our bodies.

I do not in any way want to discourage you, but I also had a neuro tell me I had conversion disorder and that he in fact diagnosed at least 2-3 people a week with this disorder. True conversion disorder affects only about 1 in 200,000 people and most therapists don't ever see it. This would mean that statistically speaking I would be the only person in my town to have it, but he diagnoses 2-3 people every single week. This is not something I wanted to hear when I decided I was going to go with it so I could get better. But it's good to know the stats and would be interesting to see how many patients your neuro gives this diagnoses to. If you have a therapist on board already, do they agree with this?

If you do have conversion disorder the good news is, that 50% of people spontaneously recover and the rest have a high success rate of recovery. So if you do, at least it's something treatable.

I would readily accept this diagnoses from a psychiatric source. Not from a nuero. Specialists need to stay in their own fields of expertise.

If you do have it verified by a professional in this field, I wish you much luck with getting better from it. I know you will work hard and do your best to get better as NO one wants to feel this awful, whether it's psych or physical or both.

Take care and know many people are giving you lots of hugs and support. Please check in from time to time and let us all know how you are doing. You have all the support in the world here, regardless of the cause of your health issues! morgan

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thankyou all so much for the kind words you made me cry.in a good way though.I have had this diagnosis before i got diagnosed with pots which apparently i dont have and have seen many therapists but my symptoms never disappeared.Whats happening is i get new symptoms that last about a week then they go away and a new one comes.I was having electric shock pain in my legs a couple of months ago and now they are back.Im the first to admit that i do have problems with my emotions.But in my heart of hearts i always new that there was something wrong with me.Anyway i did see a physciratrist who told me that all my tests were negative so its physcological (sp).Also the neuro i saw was the best i think and if he cant find whats wrong then noone can.I have been told so many times that it is in my head.So i guess i have to start excepting it and to stop wasting the doctors time.I have no other choice.strangely enough i have never had my ears tested and i still dont know why i feel drunk most of the time but i guess that a symptom of a conversion disorder aswell.thanks again for your kind words but i feel i have no other choice but to except it.then maybe it will disappear.

thanks h x

Edited by hayley
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Hi Hayley,

I have been told for 30 years that I was a nut case. No doctors wanted to test me les alone treat me. I was evaluated 3 x in psychiatry and they did not find any psyhological disorder. But since I was telling them my symptoms they concluded conversion disorder.

I was tested by the supposedly top Canadian syncope specialist (neurologist) and he himself said that I had hysterical faints and/or Munchaussen.

Then I went to see Dr Grubb and Dr Goldstein. I was tested at NIH and now I have the medical proof that I faint because I have extremelly high adrenaline level.

I am back in Canada now to find a Canadian specialist. They don't tell me anymore that I am a nut case because they would look like a fool if they did (I have plenty of medical proof now). I am still having problems with doctors because even knowing that I have something physically wrong they don't know what treatment to offer. I prefer to be told that they don't know what to do than to be told that I am imagining or making up all my symptoms.

The neurologist I saw on Thursday insisted I go back to the neurologist who diagnosed me with Munchaussen. I told him that I consider this doctor "dead". I don't even understand why he even suggested that I go back to that ** who misdiagnosed me 4 years ago and made my life living ****.

Please, don't let them destry your mind!

Love

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Hayley,

Hello and thanks for posting. As you can tell we don't want you to give up. Please keep fighting and searching for a dr. who understands. Is there any way you could see Dr. Grubb in Toledo? (I realize this isn't a practical option for most patients but he just seems to be so great)

Please keep us posted if you can.

Take care,

Lisa

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conversion disorder? Phooey. If you haven't been to a POTS specialist, I would first go there, instead of spending all this time and money with the psych people. If you don't have a conversion disorder now, you will by the time you leave them...When you are not feeling well, it is hard to think straight, and , eventually, you get beaten down. Mayo is good at diagnosing things- can you make it there? What about this Dr. Matthias in the UK?

Please don't say goodbye from the board. If you take this journey, we would like to hear about it. And, of course, put our 2 cents in about it.....

Joanie, Mom to Lindz, who was first diagnosed with bi-polar when she stopped getting out of bed in the mornings. I bought it for a while- didn't know what else to think. I STILL feel bad about it. Do you have a psych problem? Maybe, so what, lots of people do. Is it the cause of the POTS like symptoms? Doesn't sound like it.....sorry to be so direct, and I may be completly wrong. Just don't want you to go down the wrong path like we did.

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Hayley

I too hope that you continue to seek answers, especially if in your heart you believe that you've been misdiagnosed.

Sometimes doctor's try to make us sick in the head because they don't know how to do their job & understanding of Dysautonomia or other "REAL" illness!

I've posted these before and I can't stress how great they both are!!! :)

PLEASE - read these 2 true life stories, they might be very inspirational and just the boost you need :)

http://www.cfids-cab.org/MESA/Hillenbrand.html

Sorry this one took me a while to find and I just had to pull it from my original post.

http://dinet.ipbhost.com/index.php?showtopic=1966&hl=Lyme

Good luck

Steph

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What about this Dr. Matthias in the UK?

H and I have both seen Mathias. He diagnosed us both with POTS, and has done NOTHING to treat us. He sees me once a year now- and when I do see him, he offers no treatment at all. I should add that that is not because I am mildly affected- my own cardiologist says I'm the worst affected person with this that he has ever come across- but because he simply has no ideas about what to use other than Midodrine and Betablockers. He did mention Mestinon, but it's not undergone clinical trials in this country yet, so I can't have it.

BIG DISAPPOINTMENT, given he's the only POTS Doc in the UK, and I have to travel across the country (not just the county or state) to see him...

THe next step for H and I is probably to come over to the US- although Corinna sees someone in Holland, don't you? What are they like? THat would be nearer for both of us.

Edited by persephone
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It's also important to remember that with cfs, you do not have to have the sore throats or some of the other things.

It is as variable as OI. Those are incredible stories. I will say again, that doctors need to stay within the realm of their specialities.

My therapist says she would never attempt to diagnose me with a physical illness, so why do other doctors think they can diagnose me with psychiatric ones? I am also the first to admit I have psych problems, but then who wouldn't with all the things going on in our bodies??

You can't expect to feel this horrible, watch your life slide away, lose your friends, sometimes your family, your health, your trust of the medical world, and NOT have problems coping.

I have been dignosed with dysthymia and depression, secondary to my illness, not the other way around. I have no problem with that or admitting to that.

As far as symptoms coming and going, and getting new ones and losing old ones, who doesn't do that?

My pcp told me this illness is like MS, in that with MS you get plaquing in different areas of the brain, and those affected areas determine what part of the body will be affected. He believes that OI is very similar, in that your autonomic system is dysregulated where ever, and you have symptoms that coincide with those areas.

And like MS, it waxes and wanes. So you may have symptons for awhile and then poof, but they come back later, or some other place is hit. This makes a lot of sense to me. I don't know about anyone else, but it sure fits my body....morgan

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These are incredible stories and it would be interesting to know what percentage of us lived with a psych diagnosis before finally getting a correct diagnosis and treatment. Nearly every doctor I saw, before I was finally diagnosed, felt I had a psychological problem that was causing my purported physical symptoms. It is really hard to fight that if this is what most doctors are telling you--you have faith that they know their profession. I had one doctor, supposedly very esteemed for his diagnostic capabilities, who even after diagnosis, recommended further follow-up with a psychologist b/c I was so bedridden--he believed I was choosing to be bedridden due to severe depression. I had a 4 month old child and I wanted nothing more than to get out of bed!

So anyway, I am puzzled as to why they are discounting your earlier diagnosis of POTS and EDS, Hayley. It sure seems like that is more to go on than conversion disorder.

morgan, that is an interesting description of POTS--comparison to MS. I would say that is my experience too--multiple symptoms come and go--and can be in all different combinations. That surely makes it very difficult to diagnose properly.

Take care Hayley--I will be thinking of you. If you are able to come to the US for more tests, let us know.

Katherine

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Hayley,

i am sorry that you're leaving us, although i can understand. maybe you should indeed give it a try, when you think that this is best for you. BUT: don't forget that we are around and will stay here. so if you find out that this is the wrong track for you, please come back and we will be here for you!

i don't write much these days as i'm not doing too well but i'm trying to read as much as i can. and i wanted to try and help you.

i did see a neuro here in the netherlands who diagnosed me but after trying lots of meds (including mestinon) he said there is nothing more he can do for me so he needn't see me anymore. i felt so alone and thought that he was making things easy on himself. he diagnosed me via ttt and tried different meds on me so maybe that would be an option for you and persephone. i never understood why doctor mathias doesn't treat you with the meds that are known to be helpful with pots. although the meds don't do wonders, they DO help. my endo told me two weeks ago that i have to be patient and wait until doctors have figured out more about dysautonomia, until then doctors won't try and help me because they don't want to spend time on this. my neuro told me that he has seen more pots people in my country (although he couldn't give me any names to contact ???) but he was sure i'm the worst case. and i anwered him: and how does this information help me? so maybe this is an option for the two of you, but i'm not sure.

i wish you the very best hayley and hope that things work out well for you. and when you're sure that the psych thing isn't causing the trouble you have, don't hesitate and go find more answers!!!

warm wishes

corina

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Hayley -

I hope that you find something that will help. Many of these disorders overlap which means that many of the therapies are also the same. My husband went through cognitive therapy and it was a great benefit for him and he also suffers from depression in addition to NCS. He was diagnosed with depression first and it was actually the medication he was prescribed for depression that eased his episodes of syncope. I have an article by Dr. Grubb that states something like 50% of the patients that have NCS also suffer from depression. Both disorders are believed to be influenced by neurotransmitters (in the article, he mentions Serotonin).

It is frustrating to not have a diagnosis that you do not believe in but hopefully the therapy they prescribe will help you find some relief from your symptoms. If it does end up to be a psychological problem then you are on the right path for healing. The neurologist told us that of the conditions that cause this stuff, psychological is the easier to treat.

I wish you luck - we will still be here!

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Hayley

As for feeling drunk, many people have complained of that symptom and I don't think any of them have been diagnosed with Conversion disorder. See for yourself by doing a search on the top of this page and simply put in the word "Drunk."

You know yourself better than anyone and if you think you have some kind of Dysautonomia find a doctor that knows enough to support you!

Steph

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Haley, I wish I could wisk you away to the US to a decent doctor who could do a good differential diagnosis. Reading your goodbye just makes me incredibly sad. A conversion disorder that arose from what???? I don't mean to be confrontational, at least not with you. I just want to take your doctors by their collective necks and shake them until they turn blue.

I hope you find peace and health ahead of you. nina

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Hayley,

I'm going to chime in here and add that I do not think it sounds like you have conversion disorder. You have real problems that may defy diagnosis, but just because your tests are negative does not mean something isn't going on.

I have swelling in my legs that begins as soon as I sit up and become vertical. By the end of the day, I am swollen to the point that I was when I was pregnant, before this POTS stuff all began. I have had a ton of testing and no one can figure out why I am retaining all of this fluid; however, my doctors have actually seen the fluid retention in my legs, so they know it is there. Just because you test negative does not mean that your symptoms aren't real -- that's my point.

The other day a study came out that again made the point that women who have heart disease often have a certain kind that doesn't show up on any diagnostic tests because the plaque in their arteries is very evenly distributed and doesn't get all clotted up in one area, like it often does in men. These women are often sent home with "negative" tests, then have heart attacks weeks to months later. Again, a negative test only means that whatever your problem was, it either a) wasn't detected, for some reason or another; ;) is not severe enough to show up; c) who the heck knows?

Hang in there and please be persistent if you think you are ill. And by the way, you can definitely have emotional problems and still be physically ill with another condition. "Normal" people aren't the only ones who get sick! Take it from me -- I am surely not "normal."

Amy

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Guest tearose

Dear Hayley,

I have such mixed feelings. I want to believe that finally you have a correct dx and also protect you from ignorant poorly educated doctors at the same time! I want what is best and correct for you. I hope you know that whatever develops, you must trust yourself over any and all doctors! You can say "no", you can say "wait", or "go slower", "stop", and even "let's rethink this"...trust your instincts, ask lots of questions and be part of your medical team. Make these next important decisions WITH the doctors. Don't let them pull or drag you! okay? I care! All of us here do.

My concern comes from my personal experience with doctors who can't understand why we have problems when the "bloodwork" or the "test" didn't show "anything". Well, maybe they just don't have the right diagnostic tools yet!

Hey, didn't everyone think the world was flat for awhile?

I pushed long and hard and finally on my last trip to the Mayo Clinic, they heard me and did a wide variety of testing that showed denervation in my legs. My local doctors know nothing about these tests, don't know about how to even detect denervation!

Anyway, just know that we want you to be healthy and happy and that we support you on your healing journey.

best regards, always, tearose

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well today im not convinced its in my head.i havent been well for the last couple of days.i feel terrible, can hardly walk and i have the numbness back on my leg and cheek.Im soo exhausted ..these are the same symptoms that put me in hospital in september .thankyou again for all your kind words they have really picked me up.take care.

h x

Edited by hayley
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