Neurologist try to say was all in my head and refused treatment.

[merkat30]

Hi everyone so I had appointment I have been counting the days down to see hoping they may help me with a neurologist in a well known hospital here in the uk. I have several illnesses hyper pots mast cell activation syndrome erythromelalgia seizures unknown cause and every vitamin under sun low 

I just gna bullut point all his faults as I may cry again am so mad. 

•I am in a wheelchair due to hyper pots weakness high heartrate blood pressure up down  he goes to me "why u in that thing" this I think is really not a appropriate way to ask yes?

•I have been having seizures adrenaline up and downs  tremors generally bloody scary night time very unwell as I have wrote about in few posts this was the reason for my appointment "I said all this in detail .. he goes to me I qoute "ooh it a migrane " now i have had migraines as i am sure lot u have they are horridous!! But those symptoms were not of migrane i said this politely to him and health care nurse present.  He was all i am the neurologist i no better dam right refused me a mri because i had one in 2016 his words i never asked for a mri or anything I may  add only mri i have had since i was child i may add i am 31 years old women with 2 children I am no wimp i suffer daily with up down of bp and extremely  volatile heartrate mast cell problems i never bug the doctors i am no hypcondriic which what he made me feel 8 years not lot help I thought this was gna bbe the help I needed to not be housebound able to live my life I ovs thought wrong 

○ he then went on to say I need coping strategies for these imaginary..."migraines" !! How a seizure is migrane is beyond me... And wrote in the letter to doctors I need to be on mental health medicine and all in my head my husband who seen all this and was at appointment agree with me that this was very poor care . I feel let down dam upset I been treat this way I do . 😭I also really feel anyone that see him and has word anxiety on file (I miscarried 3 times from 2010 I was grieving this had been holded against me ever since )  I now have asked to be seen by different doctor got no reply do I put a complaint in is there even a point will get me anywhere or just use up precious energy ...

[POTSie78]

I'm sorry you are going through all this.  Unfortunately its very common to be dismissed by a doctor.  The neurologist i was seeing disagreed with my electrophysiologist that diagnosed me with POTS through several tests..  He said I couldn't have dysautonomia because I am not diabetic. He talked about doing an MRI of my lower spine because I was born with spina bifida but he said he didn't want to open that can of worms.  Ugh!  So I am now seeing a different neurologist that specializes in dysautonomia and is putting me through more specific autonomic tests.  Don't quit advocating for yourself.  You know when something isn't right ith your body.

[merkat30]

So sorry u hadve had to go though that. Some people are just so rude  they are. Like how or even why did they become doctor if not to help people ? 

I won't I have been fighting for answers for 8 years now I keep going till they help .

[Guest KiminOrlando]

So very sorry. I have been there too. Mast cell Activation Syndrome causes migraines. They are VERY real and VERY bad. They get better with treatment for Mast Cell Activation Syndrome. I had to go to an Allergy and Immunologist to get help because my Neurologist basically said the same thing. He said, "You sound worse on paper than you really are." He didn't think POTS was a big deal or dysautonomia. I'm thinking he is a waste of money and I may be dropping him. You DO need to find a different doctor. Maybe try the Allergy and Immunologist and once you get a diagnosis, then go back and file a complaint? I don't think Neurologists know what mast cell is. 

[MTRJ75]

I've had to come at my neurologist several times with MCAS, but thankfully he's remained open minded and curious, even if that's not his area of expertise. If you can't find an expert in the specific area, having a couple of doctors who at least care and are willing to look into things helps so much.

One of my first trips to the ER around five years ago, the ER doc said that what I was describing can't possibly be a neurological disorder then gave me a xanax and tried to explain to me that 98% of the time it's anxiety. When I asked what happens in the other 2% of cases, he left the room and I never saw him again. I always had in my head that I was going to eventually go back to them with a concrete diagnosis and shove it down their throat, but apparently that would do little good because it's not just him, it's the entire system. 

You can only hope that with these chronic conditions becoming more and more prevalent and recognized that doctors would start getting educated. I hardly ever see my primary anymore because he had no idea what I'm dealing with, but at least he'll give me referrals to people who might. It's an exhaustive process, especially if you can't travel and have to do all this on your own. 

[Nin]

I'm so mad he spoke to you like this (not surprised) its just too common 😒 I get what your saying with things on your file, its like they love to see this as they must think this will make my life easy ill blame mental health. You can't even get people to begin to understand how all this effects you. Its like that saying "Thee who knows it feels it" you have to feel what I'm going through to truly understand. Problem is they know a little about a lot, so pots probably only know 2 of the MANY symptoms, mcas 2 of the MANY symptoms. I remember on the phone I said to the neurologist I've had to get around in a wheelchair (not in one now but certainly feel like I need to sometimes) and she went quiet. I know she was thinking I don't need to be in one. Who in their right mind would want to willingly be in a wheelchair age 37 yrs old if they didn't need to!

You have to complain. He needs to understand what he said is so wrong. 

[merkat30]

He was so vile so rude plus no help what so ever !! So sorry u had go though that to  . I know why would I want be in wheelchair i miss out on sooo much i do because of this illness .I think he thought i was not all there even before i got to the appointment.  I think personally mentally i deal real well with all this daily torture my family say i am most strongest person mentally they no . I do worry anyone that has mental health issue but also could have cancer or ms or anything g not mental it not diagnosed because he dont help we all no illness domt discriminate doctors do though.

[Pistol]

21 hours ago, merkat30 said:

•I am in a wheelchair due to hyper pots weakness high heartrate blood pressure up down  he goes to me "why u in that thing" this I think is really not a appropriate way to ask yes?

@merkat30 - I have to use a wheel chair when I am in a flare b/c many times I passed out or had seizures when I have to stand in line, so I use it for stores or Dr offices when needed. One cardiologist - many years ago - told me that the reason I am having problems with my HR and BP is because I think I have to be in a wheel chair. If I just got up and walked around I wouldn't have any problems b/c there is physically nothing wrong with me. When I told him that my doc prescribed the W/C due to me passing out in public places, including his office so often, he replied "This is what these docs do that think POTS is real - they create mental cripples". He then went on to say that he knows all about POTS, and that it is a hoax. "Drink water, eat salt and go about your business like anyone else - and for crying out loud stop paying attention to your HR and BP - it goes up and down for everybody!" ---- He dismissed my NCS and POTS diagnosis and my many autonomic seizures as being "hysterical in nature" and finished off by declaring: "You are a victim of misguided specialists with too much time on their hands that want to make a name for themselves by inventing a phantom illness" 

Thank God I have a great PCP that listened to my rant after that visit and simply kept looking for a better doc to refer me to ( which i found ). 

So sorry merkat! I am sharing this experience to let you know that you are not alone, that there are docs like that and that you just need to keep looking for a good one. 

[cmep37]

Big hugs Merkat - I am so sorry the appointment didn't work out the way you had hoped.

On 6/6/2021 at 1:41 PM, merkat30 said:

he goes to me "why u in that thing" this I think is really not a appropriate way to ask yes?

I saw a rheumatologist and he said exactly the same thing to me - must be what they learn at medical school in the UK!  I understand you feel you don't have the energy to complain about the way you were treated (honestly I'd probably feel the same in your shoes) but  in the apst I have forced myself to complain about particularly unpleasant doctors so other people don't have to go through what I did!  Is there anyone else you can see? - I know on the NHS you sometimes don't have a lot of choice.  Could your GP refer you for an MRI?  Could you manage to travel to see the specialists at the Autonomic Unit at University College London - I think your GP can refer you to them and they are supposed to be the leading neurology clinic in the UK - they should at least be prepared to listen to you?! 

I actually got so fed up of being diagnosed with anxiety and stress and depression that I went down the route of going to the mental health people and getting them to assess me.  The clinical psychologist gave me a clean bill of mental health, he said he didn't know what was wrong with me but it wasn't depression or anxiety and he believed it had a physical cause and after that the minute a doctor said it's all in your head I could say no I've been assessed and the mental health specialist says there's nothing wrong with me so think again!

[merkat30]

22 hours ago, Pistol said:

@merkat30 - I have to use a wheel chair when I am in a flare b/c many times I passed out or had seizures when I have to stand in line, so I use it for stores or Dr offices when needed. One cardiologist - many years ago - told me that the reason I am having problems with my HR and BP is because I think I have to be in a wheel chair. If I just got up and walked around I wouldn't have any problems b/c there is physically nothing wrong with me. When I told him that my doc prescribed the W/C due to me passing out in public places, including his office so often, he replied "This is what these docs do that think POTS is real - they create mental cripples". He then went on to say that he knows all about POTS, and that it is a hoax. "Drink water, eat salt and go about your business like anyone else - and for crying out loud stop paying attention to your HR and BP - it goes up and down for everybody!" ---- He dismissed my NCS and POTS diagnosis and my many autonomic seizures as being "hysterical in nature" and finished off by declaring: "You are a victim of misguided specialists with too much time on their hands that want to make a name for themselves by inventing a phantom illness" 

Thank God I have a great PCP that listened to my rant after that visit and simply kept looking for a better doc to refer me to ( which i found ). 

So sorry merkat! I am sharing this experience to let you know that you are not alone, that there are docs like that and that you just need to keep looking for a good one. 

What horrible horrible doctor !!! He ovs never had to live with these illnesses how it ruins people lifes he wants sacking . I have appointment over phone today with my gp they sposbly spos be referring me other neurologist we will see if it happens 

[merkat30]

14 hours ago, cmep37 said:

Big hugs Merkat - I am so sorry the appointment didn't work out the way you had hoped.

I saw a rheumatologist and he said exactly the same thing to me - must be what they learn at medical school in the UK!  I understand you feel you don't have the energy to complain about the way you were treated (honestly I'd probably feel the same in your shoes) but  in the apst I have forced myself to complain about particularly unpleasant doctors so other people don't have to go through what I did!  Is there anyone else you can see? - I know on the NHS you sometimes don't have a lot of choice.  Could your GP refer you for an MRI?  Could you manage to travel to see the specialists at the Autonomic Unit at University College London - I think your GP can refer you to them and they are supposed to be the leading neurology clinic in the UK - they should at least be prepared to listen to you?! 

I actually got so fed up of being diagnosed with anxiety and stress and depression that I went down the route of going to the mental health people and getting them to assess me.  The clinical psychologist gave me a clean bill of mental health, he said he didn't know what was wrong with me but it wasn't depression or anxiety and he believed it had a physical cause and after that the minute a doctor said it's all in your head I could say no I've been assessed and the mental health specialist says there's nothing wrong with me so think again!

I have been seen also for same reason to prove them wrong . They dont seem to care that they said I was mentally fine strong even the lady said . I hoping he refers me somewhere he is ringing today he will now have copy of that vile doctors letter to read .

[merkat30]

On 6/6/2021 at 10:58 PM, Nin said:

I'm so mad he spoke to you like this (not surprised) its just too common 😒 I get what your saying with things on your file, its like they love to see this as they must think this will make my life easy ill blame mental health. You can't even get people to begin to understand how all this effects you. Its like that saying "Thee who knows it feels it" you have to feel what I'm going through to truly understand. Problem is they know a little about a lot, so pots probably only know 2 of the MANY symptoms, mcas 2 of the MANY symptoms. I remember on the phone I said to the neurologist I've had to get around in a wheelchair (not in one now but certainly feel like I need to sometimes) and she went quiet. I know she was thinking I don't need to be in one. Who in their right mind would want to willingly be in a wheelchair age 37 yrs old if they didn't need to!

You have to complain. He needs to understand what he said is so wrong. 

I have got email back with form to print of to complain I have. He was such horrid man . What women wouldnt be sad after a miscarriage u have be inhuman or just numb that why they wrote anxiety. I think he thought I was hypo women no idea what I suffered since 2012 at all . Like u said who use  wheelchair if  didnt need lot easier walk  somewhere than get pushed be a burden. 

[merkat30]

On 6/6/2021 at 7:46 PM, KiminOrlando said:

So very sorry. I have been there too. Mast cell Activation Syndrome causes migraines. They are VERY real and VERY bad. They get better with treatment for Mast Cell Activation Syndrome. I had to go to an Allergy and Immunologist to get help because my Neurologist basically said the same thing. He said, "You sound worse on paper than you really are." He didn't think POTS was a big deal or dysautonomia. I'm thinking he is a waste of money and I may be dropping him. You DO need to find a different doctor. Maybe try the Allergy and Immunologist and once you get a diagnosis, then go back and file a complaint? I don't think Neurologists know what mast cell is. 

He assumed was migraine I never mentioned a headache to him at all I no it was a seizure as had as child no feeling afterwards think was cause of excessively high bp but he didnt take well me saying this was all I am the neurologist I no best ovs not !! I have migraines so I no what they feel  like horrible sorry u have deal them to . He said  sounds like u disassociate  now I just read letter which if he classes passing out  as dissociating he very strange doctor!!

[Pistol]

45 minutes ago, merkat30 said:

I have migraines so I no what they feel  like horrible

You know @merkat30 - my sister has a POTS "like" dysautonomia, with all the symptoms except for the tachycardia. she was diagnosed with SFN after a skin biopsy and extensive neurological work-up. But prior to this diagnosis several docs told her that she has migraines despite the fact that she did not have headaches. Apparently there are silent migraines that can cause some symptoms similar to POTS. I really don;t know enough to dismiss this diagnosis but in her case they were incorrect. I wonder if that is the new fashion diagnosis they use when they can't explain our symptoms? I will start a post asking others about it. 

Good Luck with the phone visit with the new doc!!!!!!

[Nin]

On 6/8/2021 at 10:09 AM, merkat30 said:

I have got email back with form to print of to complain I have. He was such horrid man . What women wouldnt be sad after a miscarriage u have be inhuman or just numb that why they wrote anxiety. I think he thought I was hypo women no idea what I suffered since 2012 at all . Like u said who use  wheelchair if  didnt need lot easier walk  somewhere than get pushed be a burden. 

I also had a miscarriage around that time. I took it really bad and had ocd after that. Wonder what they've put on my file. Not fair to bring any of your past up. 

[Nin]

Don't he know passing out is to do with pots. He should know this at the very least. 

[merkat30]

He was just purely useless nin .he even made my primary gp question me!! Who has seen all evidence of my illness even though I got diagnosis on paper !!! And photograph evidence if am honest feeling very alone and bloody sick doctors saying I have mental problom when I have autoimmune disorders and bloody mast cell activation syndrome !! I also had to answer very strange questions of my gp he was all like do u think u are going to die of pots?!!! I said no but I cant live way I am untreated and same goes my mast cell activation syndrome he said when do u give up tho ... I said when I least have some sort normality like I am spos just give up and live this way --this really upset me . 31 and I am meant just give up on myself pretty much not look for help . He then went on to say I could refer u to medically undiagnosed centure... hello I have diagnosis or did u forget I thought then goes on say to me I talk to you in month    ... makes me so mad . I really am not faking I never do sumit like that if I was how would I make all these symptoms appears... 

[Nin]

It really is ridiculous that they are making you feel this way. I know I said that saying "thee who feels it knows it" but a doctor should believe you, they shouldn't have to feel it. Another thing is when you've tried everything and it don't work they think you're the problem. Problem is nothing works for some people. They still don't understand pots completely or mcas to this day. You know most docs just think u only feel crap when u stand up and then when you're back down everything is all good. Pots comes with so many symptoms. Your body is just not functioning properly....got sod all about your mental health causing it. Any mental health problems is off the back of pots and sick of feeling like death all the time. Nothing worse than feeling people don't believe you and feeling you have to prove yourself as its impossible. They don't call it the hidden disease for nothing!

Been a lot of news articles lately about people developing pots because of covid. Maybe if its a more known disorder docs make takes us more serious 

[Sarah Tee]

It seems very strange to me that non-psychiatrists are diagnosing patients as having psychiatric disorders. I mean, if psychiatrists started telling their patients "Oh, you have diabetes, you have a heart murmur, you have coeliac disease" they would get in a lot of trouble.

So why do neurologists or cardiologists think they can tell patients they have anxiety or other psychiatric disorders? It's like a kind of disrespect for psychiatric diagnosis – "Oh, anyone can do that".

Just like a psychiatrist could only say "I think you might have POTS. Will you see a cardiologist?", a non-psychiatrist should only say "I think it's important we rule out anxiety. Will you see a psychiatrist?"

[Sarah Tee]

@merkat30, I was just reading an interesting article ... it's pretty long, but I think this quote from it could help with your complaint.

Quote

... the diagnosis of stress and anxiety should never be made by exclusion (meaning every other reasonable possibility has been appropriately ruled out and stress and anxiety is all that’s left); rather, there should be positive evidence pointing to stress and anxiety as the cause

Also, I know it's hard, but when writing your complaint, make sure to use unemotional language. Pretend you are writing a police report. Instead of using words like "horrid" or "rude", describe what happened in neutral terms (while still making it clear that he did a bad job). For example, he failed to explain x, he did not look at test y, when I asked him about z he dismissed my concerns and refused to explain his reasons, he stated that I had anxiety without any reference to diagnostic criteria or assessment, he stated this about migraines but current best practice says that, etc. etc.

Unfortunately there is a bias against women and if you use emotional words in your complaint you are less likely to be taken seriously.

I do hope you find someone else who can listen and actually help you soon.

[MTRJ75]

4 hours ago, Sarah Tee said:

@merkat30, I was just reading an interesting article ... it's pretty long, but I think this quote from it could help with your complaint.

Also, I know it's hard, but when writing your complaint, make sure to use unemotional language. Pretend you are writing a police report. Instead of using words like "horrid" or "rude", describe what happened in neutral terms (while still making it clear that he did a bad job). For example, he failed to explain x, he did not look at test y, when I asked him about z he dismissed my concerns and refused to explain his reasons, he stated that I had anxiety without any reference to diagnostic criteria or assessment, he stated this about migraines but current best practice says that, etc. etc.

Unfortunately there is a bias against women and if you use emotional words in your complaint you are less likely to be taken seriously.

I do hope you find someone else who can listen and actually help you soon.

I think this is a misnomer because the condition effects predominantly females and has many symptoms similar to those of anxiety AND because the symptoms of this physical disease can cause anxiety and depression as a side effect. As a male, I've run into all the same issues and had to have a psychiatric expert, who was actually well-informed on the condition, contradict the assessment of an independent medical examiner (and several other doctors, including my most recent primary) that this was a mental condition rather than primarily physical. 

[merkat30]

Sorry for later reply been very unwell anyways thank you so much all your comments so true everything I read  .I really dont no where I  be without this  site . I have put complaint in we will see what happens from there.  The appointment with mast cell doctor was alot more promising she up my meds see if it helps anything.