Jump to content
Search In
  • More options...
Find results that contain...
Find results in...
CK1

What's this type of care called?

Recommended Posts

Hey everyone, 

I read mainly Americans who go to Clinics where you get a team of doctors and after a few days all being well get a diagnoses...I was wondering what you call that type of hospital or care? and if there is any such thing in Europe privately?

I've spent 3 years, loads of tests and over £4,000 and the only thing we have narrowed it down to is an Autonomic Nervous System disorder, I can't for love nor money get my condition diagnosed, even the best Neurologist in Ireland on the board of Harvard could only tell me it was my Sympathetic Nervous system.. this can't go on and NHS Neurologist is over 2 year wait in Northern Ireland (No government, NHS at a standstill, an ENT appointment was 2.5 years when I rang to make an appointment recently!) 

I don't even think after seeing two different Neurologists, one who is an expert in her field where to start, my case seems so complicated and extreme. I am constantly stimulated, even with loads of Xanax, without I end up in hospital from days not sleeping, my eyes are so big i'd frighten you and the stimulation and sweating hardly ever goes away. 

 

(little bit of the story, but main post is above)

Main issue going for 3 years straight:

 

Not sleeping daily (not even rest), went 9 days CONFIRMED in hospital.

Feeling stimulated / “wired” (constant)

Easily over-stimulated (can go from fatigue to stimulation in seconds)

Dilated pupils (got pictures)

Adrenaline rushes (constant pumping in my veins)

Tremors hands and legs (weak and shaky on my feet

Excessive sweating & random fevers

Fatigue/Exercise intolerance

Bladder shrinkage (directly linked to how stimulated I feel)

Weight Gain – (Extreme 7+ stone in two years)

Memory Loss

Depression/Anhedonia

 

(That I can remember) Medications tried since 2016:

No change:

Lithium (Highest dose), Melatonin, Depakote, Quetiapine (50 to 800mg,), Lamotrigine (couldn’t tolerate), Olanzapine 20mg, Buspirone /Promethazine/Buspirone/ Diphenhydramine (makes my heart jump) Mirtazapine.

Zopliclones (15mg), Zoloft.

 

More Wired/Stimulated:

Elvanse, Backlofen, Phuesdephridrine (Sodafed), Guanfacine.

 

Help and sometimes bring normality for a few hours:

Xanax, Clonzepam

 

Doctors seen:

 London 2016:

GP’s trips x 15+

Physiatrists x 6 different people (Not mental health)

A&E x 5

Harley Street

 

Northern Ireland:

GP trips x 15

Physiatrist x 4

A&E x 4

Endocrinology (thyroid etc - all normal)

Catacholmine

CT Scan

MRI Scan x1

EEG

 

Private Northern Ireland:

Physiatrist (many)

MRI Scan x 1 

Tilt Test

Cardiologist x1

Neurologist x1

Dublin Nervous System Specialist

 

Catecholamines:
Urine Noradrenaline 240 nmol/24hr < 573
Urine Adrenaline 102 nmol/24hr < 147
Urine Dopamine 1590 nmol/24hr < 3270

 

Share this post


Link to post
Share on other sites

I know this sounds simplistic, but have you had your thyroid checked? Your story reminds me of the stories I heard about my uncle and he was hyperthyroid. 

What about urine catacholmine testing?

Share this post


Link to post
Share on other sites
10 minutes ago, StayAtHomeMom said:

I know this sounds simplistic, but have you had your thyroid checked? Your story reminds me of the stories I heard about my uncle and he was hyperthyroid. 

What about urine catacholmine testing?

Thanks for the reply. 

Yeah worked with an Endo for 7 months, we had a feeling it was thyroid, turns out it's not, even went to another one privately as I couldn't believe it wasn't... 

Yeah I have had my Catacholmines, just edited my post to include them,  no one I have shown have been remotely interested in them and the lab said they thought it was normal, although to me my Adrenaline seems higher than most I've asked but in range is all they care about..

Share this post


Link to post
Share on other sites
6 hours ago, CK1 said:

Thanks for the reply. 

Yeah worked with an Endo for 7 months, we had a feeling it was thyroid, turns out it's not, even went to another one privately as I couldn't believe it wasn't... 

Yeah I have had my Catacholmines, just edited my post to include them,  no one I have shown have been remotely interested in them and the lab said they thought it was normal, although to me my Adrenaline seems higher than most I've asked but in range is all they care about..

When your thyroid was checked which hormones were tested? Just TSH? There is also T3, T4, free T3, and free T4. Plus antibodies. 

Share this post


Link to post
Share on other sites

 

1 hour ago, StayAtHomeMom said:

When your thyroid was checked which hormones were tested? Just TSH? There is also T3, T4, free T3, and free T4. Plus antibodies. 

Yeah, TSH, T3, T4 (they for some reason love to skip this one, made them do it), Yeah Antibodies, i've got 4 pages of bloods, as my doctor says, on paper you are as fit as me. He can't explain the excessive sweating or tremors or any of it for that matter, but that's not his fault, no one can. 

I wish some version of Mayo Clinic was here, where you could stay for a couple of days, but then again, I bet that's a lot more than i'm thinking it costs.. Can't wait 2 years to start the process, but I can't really do much else. 

Randomly testing the Nervous System is expensive business, hence why the Dublin specialist basically discharged me and told me to go with the NHS.

I wish my GP could do send me for these tests but not really the way it works here, nor his area. He did mention a spinal tap one day, might sign myself up to that, sorry thinking out loud 

 

 

 

 

 

Share this post


Link to post
Share on other sites
36 minutes ago, CK1 said:

 

Yeah, TSH, T3, T4 (they for some reason love to skip this one, made them do it), Yeah Antibodies, i've got 4 pages of bloods, as my doctor says, on paper you are as fit as me. He can't explain the excessive sweating or tremors or any of it for that matter, but that's not his fault, no one can. 

I wish some version of Mayo Clinic was here, where you could stay for a couple of days, but then again, I bet that's a lot more than i'm thinking it costs.. Can't wait 2 years to start the process, but I can't really do much else. 

Randomly testing the Nervous System is expensive business, hence why the Dublin specialist basically discharged me and told me to go with the NHS.

I wish my GP could do send me for these tests but not really the way it works here, nor his area. He did mention a spinal tap one day, might sign myself up to that, sorry thinking out loud 

 

 

 

 

 

Spinal tap does have its risks. My sister in law had complications and they couldn't do hers, yet my friend's 13 year old daughter managed it with no trouble. 

Have you had a poor man's tilt table at least?

What about checks on your heart? Like a Holter monitor and/ or EKG?

Out of curiosity is your symptoms constant or do they cycle?

Sorry for all the questions, it just seems amazing to me that they haven't found something besides giving you something general. In the US we do have places like the Mayo clinic. My PCP recommended I go to a "university setting" to try to find out my underlying cause. Technically I have on of those in my hometown but they are useless. I have plans to visit a city about an hour away after have my son tested for POTS. The clinics are too far away for me. I will wait til that is a last resort for me. 

I think the closest name to what you were originally asking about is an autonomic clinic. But maybe a teaching school might be able to help you. 

Share this post


Link to post
Share on other sites

Interesting, i'll ask for a spinal tap, see if my GP can order one, hmmmm, that's really a stab in the dark. 

I've done a real Tilt Test, was perfect in blood pressure and heart pressure and my Dublin Specialist said it's defiantly not POTS, my symptoms are too odd, she said she could see how stimulated i was but based on my large pupils and tremors agreed it was not mental health (I got confused for bipolar for a while, hence a lot of those medications). 

EKG done many times, it's all good. 

I am constantly stimulated, i 'CRASH' with Xanax and then a conversation or making dinner can spark it up again, one day I cut my finger and went from 5 to a 9 on my scale, weird thing is, it lasts days, i've videos etc, and the doctors say well adrenaline would last like an hour.. so they don't get that either. 

. Without Xanax or something to crash this, I just end up in hospital.. although my body is now not able to stay up past a week like it use to... but the stimulation is more intense and temperature control (whatever keeps that in check) has stopped working, I can have a nice shower, or a cold one, either way the change in temperature and i'll be sweating for an hour, and  random flashes daily, i mean drenched..no fever though. 

No questions are good,  sorry this is long. i've posted my story on 8 forums, seen so many doctors, dysautonomia is kinda the umbrella i fall under but far from a diagnoses and after 20 medications no one is willing to even try random guesses anymore. Yesterday was the first time I had someone on paper say sympathetic nervous system which i've been saying for at least 1.5 years, as tremors, big eyes, adrenaline, that makes sense but no one has seen anyone who is awake this long, i don't blame them, 3 years ago i'd find it impossible to understand, i've also lost faith in everyone, no one seems to take the case on, even privately, just get blank faces with a 'it's like nothing i've heard of'... I've talked to 2 people on this forum who seem similar but my level of stimulation seems way more intense and constant. I mean it's such a nuts story, whatever this is, it's sure going to be interesting if I can ever get it diagnosed.. madness. What do you have to do in this country to be admitted like to hospital.. i've tried many times.  

One weird thing, I have pictures before and after.. i drink say 3 bottles of wine, 9pm to 1pm into the next day (sounds a lot but it's not really over that's not even a glass an hour) i'll then sleep that night and go into a crash, during the crash most my symptoms are gone until out of nowhere they spark again, no one can explain this, during the crash I can't get out of bed, it's two extremes. 

I just looked up Mayo Clinics prices, way way way out of my league, a stay is quoted around 20k, dunno if i was reading the right site and that's without insurance, being in the UK i'd have to pay... Yeah a teaching school would be the one, think they are called META's here, i must mass email some in the next few days. Sent my story tonight to 30 London Neuro's in Autonomic Neuro specialists but you never get them reading it, just an office worker who is like 'do you want an appointment', i've seen that many people I can't afford or waste time with any more people who haven't seen this,  last time Neuro cost me £300, the guy basically just felt sorry for me and that was it... felt like saying, am I paying for this? 

hope this reads half well, it's 6am, another day with no sleep ahead!

Share this post


Link to post
Share on other sites

Hi @CK1 - I am so sorry about all this! What a disaster! I have one comment: my sister lives in Germany and she also could not get ANY help with her POTS symptoms. A year ago she came here to the US to see my specialist. He is very well known and a authority in autonomic dysfunction, he diagnosed me with hyperadrenergic POTS years ago. She waited 11 months for the appointment and it cost 360 dollars plus the flight. He spent 2 hours with her ( and had informed himself well prior to the appointment reading over her test results etc ). He diagnosed her with dysautonomia ( could not confirm hyper because she could not pay for the lab ) but said she most likely has the same type that I have. He prescribed several meds, including SNRI and recommended Modafinil ( she is not taking that currently ) as well as some cardiac meds and  - she is doing great! She was close to loosing her job when she saw him and now she is top shape!!!!! If you are interested in seeing him PM me and I can give you the details. --- Another question: have they ruled out an adrenal tumor? 

Share this post


Link to post
Share on other sites

https://imgur.com/a/Vxpl1A9 - Made this page, to show some of my symptoms, only started taking pictures, i haven't uploaded the fever ones, just imagine me soaking as if i was caught out in crazy rain like a soaking...  All my bloods I have to hand are there. 

 

11 hours ago, Pistol said:

Hi @CK1 - I am so sorry about all this! What a disaster! I have one comment: my sister lives in Germany and she also could not get ANY help with her POTS symptoms. A year ago she came here to the US to see my specialist. He is very well known and a authority in autonomic dysfunction, he diagnosed me with hyperadrenergic POTS years ago. She waited 11 months for the appointment and it cost 360 dollars plus the flight. He spent 2 hours with her ( and had informed himself well prior to the appointment reading over her test results etc ). He diagnosed her with dysautonomia ( could not confirm hyper because she could not pay for the lab ) but said she most likely has the same type that I have. He prescribed several meds, including SNRI and recommended Modafinil ( she is not taking that currently ) as well as some cardiac meds and  - she is doing great! She was close to loosing her job when she saw him and now she is top shape!!!!! If you are interested in seeing him PM me and I can give you the details. --- Another question: have they ruled out an adrenal tumor? 

Thanks, it is a joke, talked to the doctor (one was seeing my mum today) and he said two things that wound me up one was "looks of people live with things undiagnosed".. i'm like yes but I can't function and you won't treat the symptoms. Oh and it's not 2 years it's 3-4 year waiting list. 

Yeah I think I am best to fly in and out of London, I've sent a lot of emails, getting them to read a short page on the situation as it's rare instead of just saying 'book an appointment' is seeming impossible, then within 5 minutes you get the 'oh i don't know'... i'm gonna avoid playing that game.. gonna play hard ball, they can scan a page (read i mean). 

I am shocked I thought Germany would have amazing health care... I have posted all my bloods they assure me all my Endo levels are normal

Thanks, I will keep that in mind for sure!

7 hours ago, StayAtHomeMom said:

What about an ultrasound on your thyroid?

I know I keep going back to thyroid, but that just seems the most obvious. 


So have I, they would not do it because they said my levels are so good (above in the link) but i'd be tempted to overrule them all, get one anyway. I paid privately for a second Endo and even he said based on my results there was no way. Two thyroid results are on that link.. wish it was that. I also HATE the way everything has to go through your GP even if Private so they seem to have to be reasonable in their eyes.. i've noticed that this is not a legal requirement and top places in London don't seem to care what your doctors think before you, as they like starting again... but todays news of 3 years if i'm lucky was basically 'go it alone son, if you can afford it, if you can't.... too bad'... 

Share this post


Link to post
Share on other sites
4 hours ago, CK1 said:

https://imgur.com/a/Vxpl1A9 - Made this page, to show some of my symptoms, only started taking pictures, i haven't uploaded the fever ones, just imagine me soaking as if i was caught out in crazy rain like a soaking...  All my bloods I have to hand are there. 

 

Thanks, it is a joke, talked to the doctor (one was seeing my mum today) and he said two things that wound me up one was "looks of people live with things undiagnosed".. i'm like yes but I can't function and you won't treat the symptoms. Oh and it's not 2 years it's 3-4 year waiting list. 

Yeah I think I am best to fly in and out of London, I've sent a lot of emails, getting them to read a short page on the situation as it's rare instead of just saying 'book an appointment' is seeming impossible, then within 5 minutes you get the 'oh i don't know'... i'm gonna avoid playing that game.. gonna play hard ball, they can scan a page (read i mean). 

I am shocked I thought Germany would have amazing health care... I have posted all my bloods they assure me all my Endo levels are normal

Thanks, I will keep that in mind for sure!


So have I, they would not do it because they said my levels are so good (above in the link) but i'd be tempted to overrule them all, get one anyway. I paid privately for a second Endo and even he said based on my results there was no way. Two thyroid results are on that link.. wish it was that. I also HATE the way everything has to go through your GP even if Private so they seem to have to be reasonable in their eyes.. i've noticed that this is not a legal requirement and top places in London don't seem to care what your doctors think before you, as they like starting again... but todays news of 3 years if i'm lucky was basically 'go it alone son, if you can afford it, if you can't.... too bad'... 

Wow that seems kind of rough. Here in the US a second opinion is just that. They usually don't look at other doctor's notes and tests and just do what they want to see what they come up with. 

You said big eyes, do you mean bulging? 

Would you GP listen to you if you brought research?

Share this post


Link to post
Share on other sites

Hi Ck1,

Sorry you're having such a hard time. I'm in Scotland and wish I could say care on the mainland was better but it hasn't been for me. I am definitely interested in seeing that specialist of Pistol's at that price, even including flights I've forked out far more here for sweet Fanny Adams! Bet it is the famous Blair Grubb - he's my hero from reading his research & what I've heard & watched online.

Couple of suggestions; I understand your concerns about a possible phaeo despite in-range urine catecholamines, and there are private places at least mainland UK where you can self refer for an abdominal ultrasound or mri. This would exclude an adrenal mass, if it hasn't already been done.

Second as a GP myself I agree with putting a line under the thyroid unless anything changes. Your presentation would be v atypical for this (although don't we all long for a thyroid problem to be uncovered with an easy fix!) & with normal bloods and no neck mass, it is extremely unlikely.

Third have you had autoantibodies relevant to the ANS checked? I am currently waiting approx 10m to see if nhs place in London will do mine but if it there is a private lab in Germany called Celltrend you can send your bloods to again no referral needed.

best wishes,

B x

Share this post


Link to post
Share on other sites

For some of you, it may be cheaper and better to hop a flight to the US and come to one of our centers. For all the problems with our health care, it still seems to work better than anywhere else when you have weird stuff. 

Share this post


Link to post
Share on other sites

Most Americans don't go to clinics and some of the clinics here aren't good with ongoing care -- so they can run a bunch of tests but won't help you once you leave the clinic.  Have you looked on the various dysautonomia websites for the doctors in your country or in Europe?  I think there are a few even in the UK.  

Share this post


Link to post
Share on other sites
On 13 October 2018 at 6:07 PM, bombsh3ll said:

Third have you had autoantibodies relevant to the ANS checked? I am currently waiting approx 10m to see if nhs place in London will do mine but if it there is a private lab in Germany called Celltrend you can send your bloods to again no referral needed.

Hmmm, i've pages of bloods I actually uploaded to Reddit, I will have to get it out and scan for these autoantibodies, think that's a new one on me, but my bloods are extensive, i'll give it to the NHS on that one, font 10 for 3 pages, had a lot. Thanks for the advice 

On 3 November 2018 at 4:17 AM, gummi said:

mayo has a charitable care program. depends on a variety of factors, but it sounds as though--at least medically speaking--you may qualify.

https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance

look into it. don't give up hope.

Oh this is really interesting thank you

On 14 October 2018 at 6:45 PM, yogini said:

Most Americans don't go to clinics and some of the clinics here aren't good with ongoing care -- so they can run a bunch of tests but won't help you once you leave the clinic.  Have you looked on the various dysautonomia websites for the doctors in your country or in Europe?  I think there are a few even in the UK.  

Yes I have been advised by many to fly to London to see Professor Mathias, so for now this is my plan, thanks! http://www.hje.org.uk/consultants/professor-christopher-mathias/ 

On 14 October 2018 at 6:24 PM, KiminOrlando said:

For some of you, it may be cheaper and better to hop a flight to the US and come to one of our centers. For all the problems with our health care, it still seems to work better than anywhere else when you have weird stuff. 

Yeah, just after 3 years the money well is beyond dry.. so annoying when you just want an answer, surely in my case it would make more sense to watch me for 4-7 days and have me out with a diagnoses, I even think our free health care system should do this in certain cases, would save money long term, but sure no one is thinking that way and with a 3 year Neurology wait they are just trying to get through the backlog asap.

 

Thanks everyone, sorry didn't get notifications (probably in my junk folder), CK

Share this post


Link to post
Share on other sites
3 hours ago, CK1 said:

Yes I have been advised by many to fly to London to see Professor Mathias, so for now this is my plan, thanks! http://www.hje.org.uk/consultants/professor-christopher-mathias/ 

Please do let us know how you get on there. I have considered him but decided to see Dr Grubb in the US instead, as barring regular IV fluids which nobody can get in the UK the only thing I haven't tried are the stimulants such as methylphenidate. I know for a fact Dr Grubb prescribes these, in fact he has written papers on it, but I am not sure Dr Matthias would and I do not want to waste £400 to come away with still no treatment. 

B x

Share this post


Link to post
Share on other sites

Yes certainly, I am going early January and will come back to this board with any big updates, especially because my case is very strange I am going to let the world (forums) know. 

Are you UK based? It sucks we have to go so out of the way. 

As for stimulants, I actually have some about 4 20mg and 5 30mg Adderall XL in my cupboard. This was tried by a private psychiatrist who specialises in ADHD but NHS registered, unfortunately, it was the total opposite to what I need, made my stimulation rise x10 within minutes... however, my experience will have nothing to do with your case. 

I honestly don't think it's that hard to get, it's hard to impossible on the NHS once over 18 (oddly).. but the psychiatrist who is interested in ADHD like mine seemed to be the first thing she wanted to try, granted I do have ADHD, but not like I had to prove or show my diagnoses (which I do have), basically read between the lines. PM for details. 

If it is the medication that is like the magic bullet then I'm sure you think 'whatever it costs', just warning you though my private prescription a month was £120 with my GP's wanting nothing to do with it... odd as I've had the diagnoses forever, it's always been on my notes and had to spend £400 for my GCSE school exams to get a report... even the pharmacy, took 3 different ones until someone took the script, you'd think I was asking for speed or something, lol, in my experience even psychiatrists here for NHS don't prescribe it, thing that keeps mystifying me is my private psychiatrist who is great does work half the time for the NHS (seems I never get the good ones). 

If you are expecting me to get a stimulant then my story isn't going to help, since my stimulation started I can't even take Sodafed... when it was never an issue before 

Share this post


Link to post
Share on other sites

You've posted a lot of info so maybe I missed this but if your BP is high enough you could try some clonidine. Altho most or my problems have been properly diagnosed, I have so many conditions that nobody knows what to do with me as a whole. I'm beyond caring about getting diagnosed with specific diseases anymore. I just look for treatments that can help. I have hyperadrenergic POTS and have horrible adrenaline problems. It's beyond just surges because it seems to go on and on. Even Valium doesn't help until the dose is way higher than for a person my size. I don't even feel it until around 50 mg and that's with no tolerance because I rarely take it. I describe it as trying to take down a charging bull moose. My BP does go all over the place so I have to be careful but if the diastolic is in the 80s and sometimes if I'm going to be in bed, in the high 70s, I can take it. It helps tremendously with many things but the extreme temperature intolerance is a significant one. I don't cycle through a ten minute bout of severe sweating every hour night or day with the clonidine. And if I do something it doesn't cause me to immediately become drenched in sweat. 

I have Addison's so I have to take steroid replacement every day. My adrenaline is high but I know my cortisol levels are not because I don't make any myself so I control that. If you have gained weight, I wonder if your cortisol levels are high. It's tricky to measure it properly because it fluctuates according to stress and there is also a normal diurnal pattern of secretion. Just wondering if that's been examined properly.

Just some thoughts. 

Share this post


Link to post
Share on other sites
2 hours ago, toomanyproblems said:

You've posted a lot of info so maybe I missed this but if your BP is high enough you could try some clonidine. Altho most or my problems have been properly diagnosed, I have so many conditions that nobody knows what to do with me as a whole. I'm beyond caring about getting diagnosed with specific diseases anymore. I just look for treatments that can help. I have hyperadrenergic POTS and have horrible adrenaline problems. It's beyond just surges because it seems to go on and on. Even Valium doesn't help until the dose is way higher than for a person my size. I don't even feel it until around 50 mg and that's with no tolerance because I rarely take it. I describe it as trying to take down a charging bull moose. My BP does go all over the place so I have to be careful but if the diastolic is in the 80s and sometimes if I'm going to be in bed, in the high 70s, I can take it. It helps tremendously with many things but the extreme temperature intolerance is a significant one. I don't cycle through a ten minute bout of severe sweating every hour night or day with the clonidine. And if I do something it doesn't cause me to immediately become drenched in sweat. 

I have Addison's so I have to take steroid replacement every day. My adrenaline is high but I know my cortisol levels are not because I don't make any myself so I control that. If you have gained weight, I wonder if your cortisol levels are high. It's tricky to measure it properly because it fluctuates according to stress and there is also a normal diurnal pattern of secretion. Just wondering if that's been examined properly.

Just some thoughts. 

I am curious, have they checked you for the adrenal secreting tumor? Pheocyrtoma I think. Sorry I can't remember the name this morning. I haven't had my jolt of caffeine. :D

Share this post


Link to post
Share on other sites
1 hour ago, StayAtHomeMom said:

I am curious, have they checked you for the adrenal secreting tumor? Pheocyrtoma I think. Sorry I can't remember the name this morning. I haven't had my jolt of caffeine. :D

Hi, If you're asking me, yes, I was tested years ago for pheo but not recently. Thanks :)

 

Share this post


Link to post
Share on other sites
4 hours ago, toomanyproblems said:

Hi, If you're asking me, yes, I was tested years ago for pheo but not recently. Thanks :)

 

Yes, I was asking you. I was curious because having both hyperPOTS and Addison's seems like it is too much. Like maybe there is a simpler solution. 

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×