Bluffers

Back in January 2015, I wrote about my visit to the Bladder and Bowel clinic which you can find here. At the time, I had to allow some space between the visit and writing because the nurse had wound me up so much. I spent the whole appointment listening to her tell me how ill her husband was with PoTs and how she had chronic fatigue. I am an empathetic person and although initially I was pleased that she knew what PoTs was, I wasn’t happy that the person that spent the most amount of time talking was her and none of it was relevant to me. She may have been trying to be empathetic but how it came across was that she was in direct competition with both me and her husband for the title of “Who is the sickest”. It’s never been a game I have wanted to play and I am shocked by just how many people indulge in it.

 

I can’t lie I wasn’t exactly thrilled about the fact that I had to attend the clinic this week, that it was going to be with the same nurse, one that I had put a complaint in against and had specifically asked not to see ever again. It’s nice to know the NHS listens to its patients when they make a complaint against one of its staff isn’t it? **sarcasm** I had visited the dentist on Tuesday morning, so I was already exhausted and although I hate going to the dentist, I’d have actually preferred it to an appointment with this nurse. As my husband says (and apologies for the crudity) “She’s wetter than a mermaids wet bits”.

 

Before we left to attend the clinic I had already explained to Jay what I would and wouldn’t put up with. I told him that if she pissed me off I was leaving the appointment. I wasn’t putting up with the drivel I’d had last time. I don’t think he quite believed me but I meant every bit of it. I was particularly distressed at the thought of having to go through an intimate examination with someone who I just can’t stand. I appreciate that it is for medical reasons but it still would have felt like a massive violation. Out of all the people who have treated me over the years and are still involved in my care she is the only one that produces this type of visceral reaction. I have been lucky as for around the last 18 months I have been dealing with the Bladder / Bowel care team, (through telephone consultations), based in a different area so haven’t had to deal with her. Unfortunately if I want my care to take place at the local hospital I have to deal with her.

 

Anyone who knows me, knows I have a real problem with people within the medical profession claiming to know about my medical conditions and then by opening their mouths  prove themselves to be idiots. I can’t stand someone doing that to me. If you don’t know, say you don’t have any knowledge in that area, don’t bluff and make shit up. As a patient who suffers from rare-ish complications from an under diagnosed condition, I read up and educate myself because if I don’t no one will do it for me. Most people I know with Chronic health conditions do this to empower themselves. Obviously these days it is an awful lot easier with the advent of the internet. However there are still some medical professionals that refuse to believe that Joe public can understand medical papers or that anything on the internet regarding medical conditions is remotely factual.

 

Unfortunately the nurse I have to deal with at the clinic is a  chronic bluffer. I don’t expect a person to have extensive knowledge regarding each patient’s medical conditions that would be utterly impossible. She may see 15-20 patients in a day, all with varying medical conditions and no disease / condition affects the sufferers in an identical manner (despite what the medical textbook may have told you). So within seconds of entering the consulting room she had got by back up. I won’t pretend that I wasn’t already massively on the defensive, purely due to my dislike of her. She started with wanting a recap of what had been going on health-wise since my last visit and the fact that I had been so unwell that I had been reliant on telephone consultations.

 

Basically if you haven’t read my blog before in 2016 I developed a spontaneous Cerebrospinal Fluid Leak or CSF leak for short. This meant I had the most horrendous headaches imaginable every time I sat up, stood up or basically raised my head off the pillow. I spent much of 2016 confined to my bed, in a darkened room listening to audiobooks. When I look back now I can see effectively I lost a year of my life, I still to this day think last year was 2015. I can’t shake it even though I know its 2017, my brain just refuses to accept 2016 even existed for me. For a taste of what 2016 was like here is the first blog post I wrote on the subject called “Never a dull moment”.

The nurse asked me about my visit to the specialist hospital for EDS. It’s something I have never written about as it was such a raging disappointment. 90% of people who develop a spontaneous CSF Leak are discovered to have  or have already been diagnosed with a connective tissue disorder of which EDS if one of them. I had been referred to this clinic as the hospital I was being treated at wouldn’t perform an epidural blood patch (something that had an 80% success rate first attempt to heal the leak). The anaesthetists that would have had to perform the EBP refused on the grounds that I have EDS. So I was left in a Kafkaesque situation where EDS had caused the CSF Leak and the doctors who could get me better were refusing to because I had EDS. Now imagine my horror when 30 seconds into my appointment with an EDS specialist when he tells me “EDS doesn’t cause CSF Leaks”.

 

I relayed this to the nurse who told me “well he’s the expert, he would know”. I could feel Mr Myasthenia Kid grab my arm, he knew that this was like a red rag to a bull. I pointed out to her  politely and without the use of bad language that this wasn’t the case. So she then replied “ well if there is only a small amount of medical evidence, it won’t have been enough to persuade him” I am paraphrasing. How I didn’t lose my shit there and then I have no clue as I could feel the anger rising in me. Here I am sat with someone who has no fucking clue (let’s be honest) and she is sticking up for a doctor that has no fucking clue. I pointed out to her that there were 100’s of medical papers on the subject, that the CSF Leak Charity would love to educate her on the subject and that the charity EDS Support UK had a massive article on EDS and Spontaneous leaks in its last magazine. Her response “oh” not I am sorry, I didn’t know that or that’s really interesting I will look into that. Just “oh” because “oh” always makes things better right? You maybe able to tell that I am still very annoyed by this.

Her next statement was breathtaking in its inaccuracy “well it’s healed now” . My leak has semi healed, it’s not 100%. It is no longer at the level of the 2016 dark days however every evening or it can be in the afternoon depending on how long I have been upright for, I get a positional headache that will only go when I lie flat. The headache can vary in intensity but regardless of the level of pain it is always accompanied by photophobia (so I need to lie down in a dark room). This means most evenings by 7pm I am in bed. I explained all this to the nurse who again tried the empathy approach “ well that’s not very nice for you, having to go to bed with a headache how do you sleep?” For about the second or third time I had to explain that a CSF Leak headache is the only headache that improves or disappears when lying down. It was irritating me no end that she was pretending to know all about CSF Leaks when she didn’t even understand the basics.

 

She then said “well you may have noticed that I didn’t have the lights on in the office before you came in, I have chronic fatigue which gives me photophobia “ This was now the third time she had told me she suffers from chronic fatigue. Her next suggestion then proved she had neither listened to me nor understood CSF Leaks on any level. “Well have you thought about wearing dark glasses all the time to stop the photophobia?” Jay said he could hear the anger in my voice when I replied to her and said “ as I just told you, I only get photophobia when the CSF Leak headache starts in the evening, I don’t get one without the other. Wearing dark glasses all day won’t stop the photophobia, the only thing that would stop it and the headache would be to lie completely flat all day every day. As I did that last year and it has significantly improved, I refuse to do that now”.  What was her response ? “oh right”.

 

Thankfully after embarrassing herself (can you embarrass yourself and be totally unaware that you have done so?) she decided to actually talk about the subject she had clinical knowledge about my bladder issues. Unfortunately my bladder has been misbehaving for a few years. We believe I have a condition called neurogenic bladder, so I have issues with urinary retention. I also have leakage issues or on some occasions I just wet myself without even knowing that I needed to have a wee. Touch wood I haven’t had any retention issues for about 12 months. Back in the early part of this year the leak issues were horrendous and the worst they have ever been. They improved when I was given the medication pyridostigmine Bromide, also known as Mestinon. This gives the medical profession another massive clue that I have seronegative Myasthenia Gravis but hey what would I know I am only the patient?

 

The effect of mestinon on my bladder was immediate. I no longer needed to wear pads if I was taking mestinon regularly. I now only wear pads if my MG like symptoms are really bad as I know I will leak then or when I leave the house for medical appointments. I still don’t have the confidence to attend appointments without a pad on because i have had accidents in the past. The difference on and off mestinon is really night and day. Crazy really. It was thought that possibly I had Fowler’s Syndrome, to me it looks like I probably had neurogenic bladder and Myasthenia Gravis, as the bladder can be affected by MG.

The nurse was pleased that things had improved so much, although she had no clue why and a) I wasn’t going to explain it was due to the introduction of mestinon and b) I didn’t expect her to. We ended  the appointment on reasonable terms, she did understand that it was important for me to avoid UTI’s ( every time I use a catheter I end up with an infection) as it impacts the rest of my health severely and a simple infection could take me a month or more to get over. So she will contact the urologist and ask about an antibiotic to take as a prophylactic, in the hope that it prevents an infection starting. I have tried every way known to (wo)man to use a catheter but every time ends with me suffering with a UTI. So some good did come out of the appointment.

 

I don’t have the expectation when I see a new doctor or nurse that they will be able to fit all the pieces of the puzzle together. They don’t teach medicine that way and they don’t practice it that way either, which is a shame because so many conditions have a wide impact across many different systems of the body. I don’t expect someone who works in one area of medicine to understand another area. That would be like asking a Cardiologist to perform a hip replacement or a Plumber rewiring your house. I understand and appreciate that medical professionals are experts (or should be) in the areas that they work in. What I won’t accept are bluffers  or people who make it up as they go along and neither should you.

 

Exhausted.com

Exhausted is an overused word however it is the only way I can describe the state I find myself in. Yesterday (Tuesday) was my trip down to Plymouth to see my new consultant, (after I got rid of the one who accused me of spending too much time on the Internet looking up syndromes to have) and catch up with family and an old school friend. 

The appointment went really well however due to two road traffic accidents in Plymouth which caused complete gridlock in the city, the rest of my plans went awry. The traffic was so bad it actually took us an hour to get out of the multi storey car park at the hospital. With my husbands blood pressure slowly climbing and me rapidly fading, I had visions of the red cross coming to our aid as I couldn’t see how on earth we were ever going to get home. It took us over two hours to get back to my parents house, a journey normally of 20 minutes to pick up my medication and various other bits and bobs that I had left there before setting off for my appointment. We then had another hours travelling time to complete the journey from Plymouth to Exmouth. All in all yesterday I spent over 4 hours in the car. This catastrophe was not in our plans and being in the car so long has caused my legs to refuse to work properly and climbing stairs is now an endurance sport which has to be completed by shuffling up the stairs on my bum. What a glamorous life I lead!

So my blog post this week will not be a long one, when I say that it just depends how much I can write before crashing completely. I have got up very early to compose this post because the worry of not having it completed was keeping me awake. I do like to have something to worry about.

As usual I suffered very badly with pre hospital visit jitters which meant a pretty much sleepless night Monday into Tuesday. I woke up at 02:30am and didn’t get back to bed until gone 9pm, I have woken up at 4am this morning. This is just begging for a Meniere’s attack to happen, which I can already feel building up. I had been told by numerous people that the doctor I was going to meet was lovely but in the back of my mind there was a niggling doubt that I could be the one patient that he wasn’t nice to. You see my neurologist I saw many years ago was treated like a god amongst the Myasthenia Gravis patients, not a bad word was said about him. The problem was that he was a consummate performer who was very nice to your face but had a nasty habit of writing utter shite about you in his notes. The neurologist treated me very badly and I highly suspect that it was him that diagnosed me with somatiform disorder. So I guess you could say we (both hubby and I) have trust issues when it comes to doctors.

When the doctor called my name in the waiting room, I had my back to him due to the lack of space provided for wheelchair users (that is a rant for another day that hospitals seem to be so unfriendly towards wheelchairs). When I turned around to face him, there was a look of shock on his face. He then said something like “you need no introduction, I can see the family resemblance”. This Dr treats my sister also and due to that has also met my mum. People say that we all really look-alike but I just don’t see it. Yes we look like each other but it’s not (to me) like we are clones! So that was nice as he hadn’t seen my sister for a few weeks but he recognised me. My last consultant also saw my sister but never actually acknowledged the link between us despite me referencing her on more than one occasion simply because we have a lot of the same symptoms.

The new doctor was really friendly and open to ideas. In fact he brought up stuff that I had on my list of the most important things to discuss with him. My list read as follows

1. Mast cell activation disorder

2. Fluid intake

3. Stomach / bowel problems / adhesion’s

4. Alice in Wonderland syndrome or Todd’s syndrome as it is also known. This would be brought up if I was feeling brave enough as I have never mentioned it to any doctor before in case they thought I was nuts.

As it happened one of the first things we talked about was the Alice in wonderland syndrome. This was due to the fact he brought up the Myasthenia Gravis / Ptosis / Nystagmus and breathing issues. He doesn’t think I have MG, he thinks my Ptosis (droopy eyelid –You can see a picture of it here) is being caused by hypoperfusion (so not enough blood flow to my brain, essentially low blood pressure in my head). I brought up the fact that when I have Ptosis or MG symptoms my blood pressure is normal but he quite rightly pointed out that it doesn’t mean my blood pressure is normal locally (as in my head the pressure is low). I can’t argue it makes sense, mestinon or pyridostigmine bromide as it is also known raises blood pressure, if the blood pressure is low in my head the mestinon would have the effect of raising it. I did mention about the ice pack test also being positive and that is an indication of a problem at the neuromuscular junction. He said he felt it was possible that both my sister and I had issues with the ganglionic receptors in our brains. As I told him I roughly understand that but much more and it goes over my head.

As we were talking about MG symptoms I brought up the nightmare of 2013, when I had all the constant nystagmus and the weird visual symptoms that lead me to believe I have Alice in Wonderland syndrome. He agreed with me that it sounded like I did indeed have this, what shocked me more was the fact that he had heard of it and didn’t treat me as if I was a complete loon, when I was describing watching birds flying across the sky only for them to rewind and do it again.

He also believed I could be suffering from another weird syndrome that causes sudden desaturation (not enough oxygen in your blood). He did tell me what it was but its name was far too long for me to remember. He told me at the start of the appointment that he had only had a quick look at my notes however it soon became clear that the poor man had taken an in-depth look at them and had already come up with a treatment plan.

Due to my exhaustion I can’t remember the exact flow of the conversation and what we talked about next and in what order. So I will be brief and explain what I can remember.

My excessive fluid intake would come under psychogenic polydipsia, as I do not have diabetes insipidus. He thinks that title is harsh because I have had excessive thirst ever since I was a baby and I could in no way be able to form a habit of drinking too much from that age. So there is something wrong with the hypothalamus part of my brain that controls thirst but we will probably never know what.

He believes I have Mast Cell Activation disorder just from reading my notes and looking at the strange reactions I have had with many if them. The closest I have come to full-blown anaphylaxis was when I had CT contrast dye injected. It’s an experience I don’t want to repeat. I was also able to show him the blotches that had come out on my neck that very morning, despite not eating / drinking or doing anything different. Due to the Mast Cell Activation Disorder or MCAD for short he wants to change my Betahistine that I take for Meniere’s disease to Cinnarizine (stugeron). As MACD is caused by histamine the Betahistine will not be helping me and by strange coincidence since taking it I have noticed that my skin has become much more reactive. He isn’t convinced that I have Meniere’s disease, I am, so he is requesting a copy of my audiology notes as they hadn’t been included in the file that was sent to him.

He thinks a lot of my stomach / bowel / adhesion issues are being triggered by MCAD. If we could get the MCAD under control it maybe that we can get those issues under control. The adhesion pain has been quite bad since the 29th November. I am having sudden onset of really sharp pains which take my breath away and leave me doubled over. As fast as they come on they go again.

The weirdest revelation of all was that he doesn’t think I have PoTs……….. He believes that my problems stem from my blood pressure being all over the place, my heart (or brain you could say) is responding by beating faster in an attempt to keep my blood pressure elevated. He wants to do another tilt table test, I have politely declined for the moment just due to the fact how ill I was after the last one.

He was incredulous that I had never had an echo cardiogram ( a bit like an ultrasound for your heart) to check that it was actually working ok and that I don’t have  a mitral valve prolapse. This should be a standard test that is carried out of everyone who has been diagnosed with EDS. For some reason my last consultant didn’t think so and I can’t seem to get my gp to move forward with this probably because I have so many problems it just gets overlooked. So my new doctor is going to ask that I get one done. If I don’t get it he will arrange for it to happen in Plymouth.

So due to his theory on it being my blood pressure causing the tachycardia he has started me back on Midodrine at 2.5mg once a day for a few days to then increase it to twice a day, then three times a day. Then I am to slowly get myself up to 5mg three times a day. We all hope that by slowly titrating it I won’t react as badly to it as I did the last time when I ended up with awful bladder problems and adhesion pain. 

When we talked about the bladder problems, I brought up the possibility of Fowler’s Syndrome. When I brought this up with my last consultant this was when he accused me of looking things up on the Internet, so I could have more syndromes. This doctor knowing my sisters history, that she has a sacral nerve stimulator so that she can use her bladder, agreed with me. He told me because not many doctors had heard of Fowler’s Syndrome this was perhaps why I had encountered such hostility. The Fowler’s syndrome would cause the acute urinary retention and the problems I have had when in hospital or at home when they have fitted a catheter and my bladder has still refused to empty due to the fact the valve at the neck of the bladder had clamped around the catheter. Again he couldn’t understand why I had been taught to self catheterise and hadn’t had the bladder issues fully investigated. I explained to him that when I raise this issue with my doctors I get told I have already had lots of tests done. It is infuriating because the doctors seem to blame me for the wrong tests being done, so now nothing gets investigated and it is only the symptoms that get treated.

I have just looked back at the amount of stuff I have written after claiming I wouldn’t write much. I don’t know how I am putting this together as I am so tired I can barely string a sentence together let alone see the screen.

Anyway back to the Midodrine, once I can tolerate this medication at the full dose of 5mg three times a day, the doctor wants me to then slowly add in Ivabradine. I have tried this drug before and it was wonderful at stopping the tachycardia but my blood pressure dropped very low. This is what my new doctor has picked up on, where as the old consultant was happy to just say “you obviously need a fast heart rate to keep your blood pressure elevated”. This doctor wants to get to the bottom of this and raise my blood pressure and then drop my heart rate. It was actually something (on my extended list) that I wanted to suggest. I have to say I was  in shock when it appeared both the doctor and I were on the same page. That has never happened.

I can’t really remember much more from the appointment and I will be honest I am starting to fade a bit here. He wants to see my print outs from my tilt table tests to see what my blood pressure and heart rate did. My old consultant handily forgot to include them in my notes. My new consultant ordered a load of blood tests, one for my testosterone levels (due to my facial hair), a repeat of the prolactin to see what that is doing and countless others, I was robbed of 4 vials worth of my blood. 

The assistant that took my blood wasn’t great, she had a constant sniff (that always makes me feel sick and is a pet hate of mine), she managed to jab the first attempt straight into a nerve and then had the gall to shout at me when I moved. She tried to tell me she hadn’t hurt me, I asked her “why would I shout out and jump if you hadn’t hurt me?” I was furious. I have never moved during a blood test, I have had 100’s of them, I have had 3 doctors jabbing me in the feet and both arms at once to get blood. So I don’t jump about when people are trying to get blood from me. My point was proved when she then got a vein on the back of my hand and I continued chatting with her whilst she got my blood. It didn’t help that I was tired and dehydrated when she was getting my blood but to try to tell me she hadn’t done anything to make me jump was ludicrous. My husband was getting quite tense at this point as he has seen me having blood taken on many occasions and has never seen me react like that.

Despite the horrible blood taking episode I would describe myself as slightly elated after that appointment. This doctor wants regular email updates on how I am doing……I know what doctor does that? My last doctor gave you ten minutes of his time and you didn’t see him again for 6 months if you were lucky and they remembered to book you an appointment. I had this doctor for 80 minutes.

My husband informed me last night as we were going to bed, I didn’t let the poor man finish a sentence without interrupting him. He said I was gabbling away like a loon, like I always do when I am nervous. Hubby is happy, he said he feels for the first time in a very long time that we are starting to get somewhere. As I told the doctor yesterday, I know that there is no magic wand, I know that there is no cure, I would just like to feel better and be taken seriously.