It's been a long time.. Again.

The time between updates seems to be growing larger. The simple fact is that going over it all while still going through it is a little unpleasant, that and I'm rubbish at updating things.

 

  [Edit: March posts have been pre-dated'ly added in just after I posted this update.]

 

Winter has been utterly horrible. When January came around things started going downhill again with a new range of symptoms that were gradually getting more and more alarming. I'd lost my voice again, though not as badly as before, it was more an up and down thing. I'd started to get electric shocks again, but this time they were different, more widespread. I also strated getting a type of migraine in the side of my face. Then there was the nose electric current that didn't stop, I can't really describe how annoying and odd that was. I found myself using pore strips just to numb down the feeling. During this time I was unable to sleep during two or three nights of the week so I ended up like a bit of a zombie. The face droops/spasms became more frequent. I look at a copy of my calendar for January and see things like 'HFS.. jaw migraine.. limb weakness.. shocks.. clumsy legs.. electric shocks arms, legs and feet.. base of spine spasms.. heart palps.. up all night with jolts.. no sleep..etc'. Needless to say, January was quite horrible, but it was about to get more horrible. My GP started me on Lyrica to help with the shocks, cramps and spasms and, though they helped a lot with the nose issue, the other bits haven't gone away.

Of HFS

Finding out (after a Google image search) that the facial droops were actually referred to as hemi-facial spasms was a step in the right direction it seemed. The explanation of how it was caused seemed to make sense in terms of what I was experiencing. So, time to find a specialist. That done, I traveled up to London to see a consultant neurologist. I went in there thinking that this would be an easy fix, just sort out a bit that's caught and then I'd get better. It was, sadly, not meant to be.

I emailed the consultant prior to the appointment to see if this was something that she was able to help with. I believe her words were (quote) 'after reading your story and looking at the pictures, i understand that you are suffering from facial spasm; to determine the nature of the spasms, you would certainly benefit from a consultation with a neurologist specialised in movements disorders'. In short.. her. When I got in there she looked at me and begun to ask me about the situation, as if she had totally forgotten my entire email to her. She also did not have the referral letter. I tried to keep it as 'to the point' as possible and had taken along photographs. She couldn't seem to grasp the fact of where I lived, so instead kept naming a different town. She didn't want to hear about my other medical conditions in relation to my symptoms, instead seemed far more interested in pinning my life circumstances to her diagnosis. She didn't want to know about the physical symptoms at all. Where have we seen this before? After seeing a 'positive' hoover sign she had decided to diagnose me with FND - Functional Neurological Disorder. Even though more modern techniques suggest the way she performed it is not an accurate way to test as once thought as the hip gives false power on the pressure down. Anyway..

The doctor told me it was very very serious and I've had it too long to be able to do anything about it myself and I could soon end up disabled. She didn't know who to refer me to and stated that I'd need the top neuro-physiotherapist to help. However she referred onto two people who worked in the same private clinic as her, an osteopath and a hypnotherapist (she said CBT would not be effective) and assured me my insurance would cover it. She stated my brain and all tests were clear - even though she had seen no MRI, clinical tests or even the referral from my GP. I was told by her that if I didn't accept the diagnosis, I had no chance of potential recovery. So when I got home it hit me and I just cried and cried. Everything I read was awful but at least I could see people going through similar stuff. Maybe at last there is some way to fix myself? I tried my hardest to come to terms with it all and accept that this is what it was.

When we received her consultation letter it was full of mistakes and inconsistencies. On finding out that my insurance would not cover her referrals I wrote to her asking what I should do... and I heard nothing back.

Who are we meant to trust? As it stands I'm just so confused. There are some last things to try but aside from that, I don't really know what to do with myself! It feels like I'm falling apart and I don't know how to make it stop.

All I want is my life back. A job, a partner, maybe even a family.. definitely a cat! I hate being a burden on my parents at 27 years old!!

FND Diagnosis Process

A few weeks later I read a medical journal about techniques in diagnosing FND and right from the start it appears she had angled the whole consultation in the way outlined on the paper, which made me furious that someone would purposely find items to support a theory rather than look at a situation as a whole and judge it fairly. These are doctors, people who are being paid a lot of money and should feel at least some duty towards their patients. I have a feeling most just see pound signs above people who have confusing illnesses, desperate to find answers.

I wrote an email to the doctor who wrote that paper, who was an incredibly kind and helpful man and actually wrote back to me on the matter.

"I have recently been diagnosed with Functional Neurological Disorder (functional stroke/weakness/facial spasm/vocal dysphonia) and came across your article on the condition and the suggested ways in which doctors are encouraged to diagnose the disorder. I only write to you to express my surprise as the content is rather disheartening to read from a patients point of view and somewhat discredits the whole diagnosis process. I am struggling to accept the diagnosis and after reading your article I am even more unsure. I have just realised (after writing all this!) your article dates from 2005 though I still feel the points made below echo true today so I will still send this in the hope of something positive may arising from it.

I feel that as a patient it may be of interest to you to know an example of why an FND diagnosis is so difficult to believe (from my point of view of course!). The doctor I have just seen followed a similar pattern to the one highlighted in your article but the patient sees through this right away, as if the Dr is actively looking to blame a functional disorder rather than accurately investigating your tests, medical history and symptoms. None of my medical history (which is very much organic) was taken into account and results of an MRI taken a year in the past were just assumed, there was no scan or medical files there. A very viable and also organic condition which began at the same time as these attacks was also brushed aside. More time was taken in 'convincing' me that the condition is functional rather than finding out the course of the symptoms. This, of course, does not inspire a great deal of confidence.

You end your article on such a positive 'moving forward' note yet spend the vast majority of the it 'teaching' doctors how to mask the psychological elements and terms of the condition just to mollify a patient, which in itself I feel is wrong because you are 'assuming' the condition from the start of the consultation. Therefore, your consultant has already presumed the outcome and spends the remainder of the appointment picking out certain elements from your history to prove their diagnosis. Any number of conditions mimic the symptoms listed as part of FND yet there is little care in checking that it's not those conditions, rather than proving it 'is' functional. All this is seemingly determined on the raising of one leg and the strength of the other? Yet what isn't mentioned is the strength passed down from the hip which can sway the outcome.

Dental influence on neurology is also brushed aside yet a paper written in 1935 by C. Bowsler Henry (Cornell University Medical College Library), highlights the link and between neurology and dentistry. Although it primarily covers neuralgia, there are many links to case studies of patients suffering the same or similar 'functional' effects yet recover fully after having embedded or impacted molars removed. I have included the document with this email should you happen to have any interest in that matter. However I will quote this passage which I feel is important."In a number of these cases the symptoms were neurological rather than dental, and in some of them the patients had been treated by neurological methods for considerable periods of time without benefit, only to be relieved immediately as soon as the real cause was discovered. It seems to me, therefore, worth while to put some of these cases on record in the hope that similar errors in diagnosis may be averted in the future." - C. Bowsler Henry

This patients trust doctors who display integrity, accuracy and sometimes simply by seeing they are interested and want to help. It is apparent that FND is a condition that is not properly understood yet and therefore patients should be told this, not be fobbed off with 8 sessions of CBT. If 'your symptoms are very much real' as doctors hasten to tell you, surely the healthier approach would be to look at those symptoms and provide direct aid for that area and at least take steps to make them comfortable and monitor the condition. My experience with doctors so far is that either they 'sympathetically' refer you to their peer group (if they are seen privately) or they show little interest and tell you that it is anxiety, even with no evidence or history to support this. Determining a patients stress to aid this diagnosis is also an area I feel is a very inaccurate way to perform a diagnosis. If you are suffering with FND symptoms of course you are stressed and upset, it is a horrible situation to live with, that is logical and everyone would feel this way in the same situation. In the first instance I was diagnosed with 'functional stroke' by a doctor who I'd never seen and didn't even work in the hospital.

My belief is that it's a hard condition for the patient to come to terms with and accept, not because the patient want more tests or attention (perhaps some do!), but because of the manner of the consultant/consultation. I honestly believe that if this was addressed properly and better criteria was put in place to diagnose the condition it would reduce the number of unnecessary appointments and increase the chance of the patient finding the appropriate management or treatment of the condition.

I thank you for your time in reading this and hope it may have at least highlighted something useful.

Kind regards, "

This doctor then provided me with up to date documentation on the diagnosis process.. which my HFS doctor had clearly not seen. I really should designate these doctors some names, it would be far less confusing!

Of APS

So.. That was emotional turmoil for me. Doctors want this to be stress but the majority of the stress is actually coming from their inability to perform the most straight forward of tasks. Hearing nothing back from the specialist was disheartening to say the least. With the cold weather sticking around the symptoms were becoming unbearable on some days. I then noticed one day before I had a bath that my legs had gone all patchy and odd. Where the patches were, the hair had stopped growing. It was also becoming harder and harder to warm up my feet, even with USB heated slippers! So what do I do with myself now? I decided to write things up, some of the bits above have been pasted from a health forum just to save some time (and no, not one of those places where neurotic people whine on and panic at the doom of everything). It's so nice to find such a helpful site with helpful, positive and informed users. Once again I have the Internet to thank for not letting me lose hope over this whole situation. Once I'd written up what was going on, put a few pictures up, I began to receive some messages, and they all pointed to something in particular..



"Hi, I have read your blog - what a scary experience you had, my God. I wonder, if you tried to google Sneddon's syndrome - it is what Bridget from fndhope had found after a very similar experience - it's a vascular problem leading to transient neurological breakdowns and strokes, too."


"Medsoph I saw your legs and they are a tall tale sign of Sneddons. Dont be disappointed if your APS comes back negative. Some do and some just dont. Has your blood been checked for clotting time test / INR? It needs to be checked how thick it is and how quickly it clots. My GP is the one that helped me get most of my tests done and then I was referred to a hematologist where I was officially diagnosed."


"I couldn't help but ask if you have been checked for sneddons syndrome, hughes syndrome, or autoimmune disorders? Looking at your symptoms they very much resemble mine. I told doctors whatever was going on in my hands ( the early signs of Raynauds) was going on in my body particularly the brain. -was told that was impossible by at least one doctor- a few months later a hematologist said that was a good explanation of what was happening and I was diagnosed in Oct. with seronegative antiphospholipid syndrome/sneddons. oh and I would get a rash (which isn't like a normal bumpy rash but is called Livedo Reticularis or something like that. sometimes called a corn beef rash) very important part of diagnosis and may be worth looking into."


"Anonymous has left a new comment on your post:

looks like Hughs syndrome / Sneddons syndrome. Legs are livedo reticularis with neurological symptoms with positive APS (although not all patients do). Rarely diagnosed correctly. Maybe something to look into." 


I had spent so long convincing myself that this -was- FND (on the basis that I could not hope to get better if I didn't) that now having people contact me about Sneddons/APS was.. I don't even know what to think! It's like being back to square one. All I could do was go back to the GP and explain what had happened about the FND diagnosis and show her my legs, hands etc. She asked me if the specialist had seen these photos and this stuff, to which I told my GP that the specialist wasn't the slightest bit interested.  My GP didn't seem at all convinced by this diagnosis and suggested that we go back down the Raynaud's/Reumatology/Vascular route. She asked if I wouldn't mind doing some research into it to find (hopefully) the expert in such things including the Sneddons situation. She even gave me her email so that I could send all the information on to her.

Back to the interwebs, medical journals and hospital indexes. I contacted a certain hospital and they passed it on to one of the doctors there and he said 'he'd be happy to see me'. Does happy to see me, mean that you can help? Has he really read it? Is this the pound signs again?

Here's part of the email I sent along:

"Thank you so much for your help today. I have had a diagnosis of this condition being 'functional' however, after seeing some the photographs, examining my limbs and seeing me over a long period of time, my GP is unconvinced with that diagnosis and wanted to investigate the newer symptoms further from a vascular/connective tissue angle. I hope that in contacting you that the direction we should go in might be clarified. There's a lot of symptoms so I'm sorry in advance if I'm bombarding you! I've attached some photos which hopefully demonstrate things a little better. I have had a couple of people contact me via a health forum asking if I'd had Sneddon's checked but I didn't really have any idea what that was, so if you can help I'd be very grateful! My GP has re-tested for APS but we are still awaiting the results.

2013
Since taking Nifedipine, last years events/attacks have been reduced and are milder but the newer symptoms can be debilitating. Most of these began about mid January.
 
'Electric shocks' in limbs, constant 'electric current' in nose, similar in groin.
Mottling type pattern on skin. Appears mostly on the hands and legs (knees and above), gets darker in the cold.
Any attempt at physical activity results in headache/migraine, sometimes hemi-facial spasm, tremmors and nausea.
Circulation problems. Legs cold from knee down, feet remain constantly very cold. If standing for a period of time, knees swell painfully and blotches appear. This also happens if I take a shower/exposure to heat. Hair appears to have stopped growing in blotchy area.
Sudden fatigue.
Painful hand, back and leg spams. [Treating with Lyrica]
Regular foot cramping.
Heart rate fast and raising ~120bpm on standing.
Random heart palpitations at night.
Toenail drops off sometimes. Hands can also be different colours/temperatures."

So with a certain amount of skepticism, I booked the appointment. This leads us up to last week.

The Appointment

Here I am again. This being the same place that last time, a year previously, I was told that there was nothing they could do, go back to neurology. My parents had dropped me off and I assured them that I'd be fine going in alone. Sat there in the waiting room growing steadily more nervous. I can't help this now after the treatment throughout this year, I get uptight and heat rises to my face and I look like a giant strawberry even before I've gone in! Twenty minutes past my appointment time... Thirty.. Fourty.. In part of my brain I think that this could be a good sign. Often, it can be that a doctor is late because he's given the proper amount of time to a patient, not the allocated period of time. To me, that shows that they really care. A few of the staff come and check on me, to see who I'm meant to be seeing. Soon after I get called in and I can feel my face growing hotter.. If that is possible. The first part of the consultation is a bit of a blur but the specialist is nice, talking very fast at me. Then he asks me to go take my clothes off so he can look at my skin and examine me. Surprisingly, after the trauma of the endometriosis saga, this doesn't even phase me. To my horror, where I'd attempted to chemical treat some emo scars on my arm from teenage years (through paranoia of being judged by doctors, as they always look and make a facial expression of disapproval) I'd tried to find a method of making them less visible.. but in this period of time they were like beacons, glowing bright red against white skin! Oh gods. I quickly tried to explain to him what I'd done as Dad said it was best to just be honest. As I blathered my way through an explanation, he took my arm and he looked very seriously at me and said 'I'm not here to judge you, you do not need to explain this to me'. He said there was 'livedo' something on the arms, hands and legs. As I was getting dressed he asked what other doctors had said, so I mentioned that they were trying to convince me it was a functional diagnosis. He then said 'so.. that you are nuts'. I had to get him to repeat this three times to actually understand what he meant, and yes he really did mean nuts. He asked me of my understanding of the term 'functional'.. I explained my GP had said is 'they don't know' then the previous neurologist I'd seen said that explanation was entirely wrong and it was this, this and this etc. The specialist said very firmly that the term 'functional' means 'medical failure'. Was this really happening? I've been convincing myself that this is FND due to finally trying to trust a diagnosis and now all of that wall has been ripped down in an instant. Was this really happening? We then talked briefly about the other symptoms and he ordered the blood tests. He explained a little about Sneddons and Antiphospholipid Syndrome. I was still so flustered and nervous, I wish I didn't get like that.. I'm so silly. He said he would take my file home to absorb the information and 'would get to the bottom of this'.  *blink*.. Really? Do I dare hope? Then as we were ending the consultation he came round and gave me a hug... A hug! If nothing else he is a lovely man but then he showed me a copy of my email to him with his writing at the top 'APS? - Happy to see'.. That meant a lot to me because he had actually read the email and looked into it, if only a bit. I even got another hug! I think I was even more flustered then because I've not had an appointment like this.. ever. Even the nurses that took the blood were very nice and super efficient. Though on leaving, one of them was calling me Sarah, which made me worry just a little, but not much. My goodness they took a lot of blood.

This visit.. for me, was a huge breath of fresh air! I don't want to get my hopes up too much because I really don't know what I'll do with myself if he can't help me. However.. I will know more next week. Fingers crossed.

The following days since they took the blood have been rough. I've had problems with my heart just racing madly (even more than usual) for no reason, feeling very sick and today the pain in my limbs has been awful (this also coincides with 'that time' which the Mirena doesn't seem to be doing a great job of stopping). I get this sudden violent fatigue, have to keep getting into bed for a nap because I literally can't do anything else. I tried to just put my clothes away today and it took everything out of me, my chest went funny and I couldn't stand up any longer. Every joint in my body hurts and my legs feel like they have the flu... or something.. I don't know! It's all too odd.

There is hope, for now, and that's what matters.

Until next week.