Prior to all of this (the post below) happening there was the aforementioned facial rash and a general increase of attacks, joint pain, fatigue, insomnia, low mood etc etc. So with all this in mind I wrote to my specialist who then had his secretary call me back to say my appointment was next week. I hadn't realised this so I felt like a bit of a pleb but I did have three letters from the clinic with different dates on them all marked as 'sent' on the same day. I couldn't get through to them on the phone so just assumed my appointment wasn't until March.
Anyway, what I hadn't noticed was that the clinic had moved location to a totally different hospital and that I had to go to London Bridge now. Unfortunately there is major works all over that station and the normal trains aren't stopping there. The website said that I could go from my local down station and get the Canon Street train so I planned it that way and all seemed fine.
The London trips are always traumatic, painful and tiring. In other words, scary! Due to my insomnia at that point I just gave up on getting any sleep that night and started the journey. When I got to the station the ticket officer told me there were no trains to Canon Street and I had to get off at this station I'd never even heard of. I checked with another guard and he said change at Lewisham and the announcement said change at Dartford. So I had no idea where to change. The lady in front of me on the train was going to a hospital so I had an idea to follow her.. unfortunately they weren't going to the same hospital - and- got off at Dartford. Argh. When we got to Hither Green I just thought screw it, I'll get off here as time was really running out to get there on time. Thank goodness I did. The next train was a Canon St one and I got there just in time. Journey stress! It didn't help that it was freezing cold and drizzly. I only had to wait about an hour to see my specialist and he was lovely. I got to see him with no students this time which was a lot more comfortable. He was kind as always and gave me a few hugs. We talked over the rash, hair loss and some other matters including the -really- low mood. He said that if I wanted to try anti-depressants or sleeping tablets he would help me but it has to be my choice. He's also given me new medication that people with SLE/APS take - Planquenil (Hydroxychloroquine). Apparently it takes 8-12 weeks to start working so fingers crossed. I really, really hope that it helps with the day to day stuff, maybe even the 'bigger' stuff. He noted down the attack from Christmas day and the hemiplegic migraine but when he wrote the letter he completely missed any mention of the attack on Christmas day.. Ah well, I can't complain. The rest of the letter was good.
By the time I'd gone to the pharmacy and got my lunch I was shattered and the journey home was horrible, damp and cold. I managed it and that's what counts. Obviously that much exertion resulted in an attack the following day it seems (second half of post below).
That's done for another 6 months and at least the next trip will be during the summer when it will be warm.. hopefully!
Showing posts with label Lupus. Show all posts
Showing posts with label Lupus. Show all posts
Tuesday, 17 February 2015
It all looks 'normal' until..
So where to start?
Without my parents I'd be quite literally fucked.
I'm just so pissed off, why? Because I can't even make it downstairs right now. I'm nearly 30, no house, no job, no partner. And I have these stupid fucking illnesses that NOTHING seems to explain and nothing seems to fix. In my current state my parents are doing everything for me and I can only just about make it to the bathroom by myself. In a few days I could be back to 'normal' or as normal as it gets for me.
Just before I left to go and get food on Saturday night I had some very strange tingly chest pains. On my way back they started to get worse, however a car nearly plowing into me on my side of the road caused a big adrenaline boost and I got back in one piece. Though the door with piles of food bags in my arm, I came across my step mum in the kitchen and told her to take the food quickly as I was going down. I knew just a split second before.. I'm not sure how but I knew it was about to collapse. It wasn't like it has been before with the other significant symptoms. This one was just *plonk* and I was down. I grappled at the kitchen counters for a bit to slow my fall but I couldn't hold on for long as I'm not the strongest of people. No one here can lift me so it was just a case of gradually pulling myself up onto a chair with people helping and then trying to use the crutches. However this time the led legs were too much and the wheely desk chair was called upon.
Ended up in a chair in the living room with my now luke-warm McDonalds (how I wish I had some right now!) which was tricky to eat as only half my mouth, one hand, and one eye was working. The mouth was drooped over, the eye lid had closed over and the rest of me was like a dead weight. A friend text to ask how my evening was doing so I thought fuck it, I'll be all modern and send a selfie. Maaay have freaked him out a little. I was in total attack mode for something like 2 hours, wearing off during the third.
So then it was time to tackle the stairs. I have -never- had such a problem with them but it was bloody difficult and took god knows how long. By the end of it I was shattered and the pain in my spine and left hip was something..special.
Is this due to the Cerazette in the same way that the Depo injection reacted? Some kind of migraine? Functional Neurological Disorder? APS/mini-stroke? Vascular spasm/Raynauds or something else? Who the eff knows! Going to hospital each time I have an attack is just pointless - standard MRI of the brain then 'oh its functional, get out'. That's not really going to solve anything.
So now I'm upstairs and not really able to get down. In my head I'm sure that I could make it down but the trip up again wouldn't be wise. Dad and my step mum are bringing up food and I just sit here in my PC chair all day really until its bedtime. If I try to walk my left leg/hip kinda gives out from under me and both legs feel as though they have led tied to them, so as I just stagger and nearly drop (plenty of ledges to cling on to. When I use the crutches the left leg tends to just drag behind in a silly manner.
I have this horrible pain right up my spine, and in my hip and weird travelling 'vein cramp pains' - I have no idea if that's what they are but it's the best way to describe it. What's more odd are the chest pains. They are fairly constant and like an electric stabbing.
Things might be ok tomorrow, or they might still be like this. As if I wasn't miserable before, now its just.. urgh. Tedious and frustrating.
A while into the Depo injection this happened, and now similar with the Cerazette (endo prevention option). I don't know whether or not to stop the tablets. They might be the cause somehow OR they may have nothing to do with it. I don't want to go onto Zoladex :(.
Another attack occured when I was away from home and it was mortifying. I was at my sisters house, laying on my side on my neices bed playing Hello Kitty with her (she's 4). My nephew (11) was sitting just across the room. I suddenly felt like.. I was viewing myself from inside my eyes, totally zoned out, but not, if that makes sense. I couldn't really understand what was going on and as I saw my neice talking at me I couldn't form a reply. I realised I coudn't speak or make the mouth muscles work, and that the rest of my body wasn't responding either. My sister ushered the kids out of the room and dragged me further up the bed into a more comfy position. My face then dropped on the one side and I tried to talk to her but at that point all that came out was a slurred mess, which I guess is better than nothing. It was horrible, I never ever wanted that to happen in front of the kids and it really saddens me that it did. Later on my brother in law came up and carried me downstairs and plonked me on the sofa. Sister had told the kiddies that I had a toothache and was fine. My gorgeous little niece was so sweet and gave me stickers for being poorly. The spaghetti was lovely but kind tricky to eat when only half your mouth is working. Over time the symptoms improved. It came with no warning though this time, however I had been to London on no sleep the previous day and was absolutely shattered so it was inevitable. Seems that this time it was only a mild attack though. The next day they drove me home and I went back later the following week to stay and then drive my car back.
I think the hardest thing about all this is that I don't properly understand what the hell is going on so how can I accept it? I can't see how this is going to get better or how I'll be able to get my independence back that I had when I was 23. I can't work out what to do with myself. I keep reminding myself there is hope but it's kinda starting to fade. Then I think of all these people who would think me pathetic for whining about this. Yes I know I could have cancer or something terminal but.. Things have been shitty since I was 14 years old, I'm tired of this shite, the pain and the immobility! Someone jokingly said 'oh yea, benefit fraud soph' and.. I know they were joking but it still kinda hurt. They have absolutely no conception of what it's been like or how my the illness is. Yep, I know I look 'fine' some of the time.. and many times I look like the picture above. I don't go out or visit people when I'm busted so obviously they only see the 'normal' face. I can't help but be paranoid with how people judge me as I'm in the situation I described above and it makes you very insecure.
That's enough for now, will make an update on the lupus clinic visit a little later.
Without my parents I'd be quite literally fucked.
I'm just so pissed off, why? Because I can't even make it downstairs right now. I'm nearly 30, no house, no job, no partner. And I have these stupid fucking illnesses that NOTHING seems to explain and nothing seems to fix. In my current state my parents are doing everything for me and I can only just about make it to the bathroom by myself. In a few days I could be back to 'normal' or as normal as it gets for me.
Just before I left to go and get food on Saturday night I had some very strange tingly chest pains. On my way back they started to get worse, however a car nearly plowing into me on my side of the road caused a big adrenaline boost and I got back in one piece. Though the door with piles of food bags in my arm, I came across my step mum in the kitchen and told her to take the food quickly as I was going down. I knew just a split second before.. I'm not sure how but I knew it was about to collapse. It wasn't like it has been before with the other significant symptoms. This one was just *plonk* and I was down. I grappled at the kitchen counters for a bit to slow my fall but I couldn't hold on for long as I'm not the strongest of people. No one here can lift me so it was just a case of gradually pulling myself up onto a chair with people helping and then trying to use the crutches. However this time the led legs were too much and the wheely desk chair was called upon.
Ended up in a chair in the living room with my now luke-warm McDonalds (how I wish I had some right now!) which was tricky to eat as only half my mouth, one hand, and one eye was working. The mouth was drooped over, the eye lid had closed over and the rest of me was like a dead weight. A friend text to ask how my evening was doing so I thought fuck it, I'll be all modern and send a selfie. Maaay have freaked him out a little. I was in total attack mode for something like 2 hours, wearing off during the third.
 |
| 'Normal' face and 'attack' face. Lovely! Don't judge illness just by a profile picture! |
So then it was time to tackle the stairs. I have -never- had such a problem with them but it was bloody difficult and took god knows how long. By the end of it I was shattered and the pain in my spine and left hip was something..special.
Is this due to the Cerazette in the same way that the Depo injection reacted? Some kind of migraine? Functional Neurological Disorder? APS/mini-stroke? Vascular spasm/Raynauds or something else? Who the eff knows! Going to hospital each time I have an attack is just pointless - standard MRI of the brain then 'oh its functional, get out'. That's not really going to solve anything.
So now I'm upstairs and not really able to get down. In my head I'm sure that I could make it down but the trip up again wouldn't be wise. Dad and my step mum are bringing up food and I just sit here in my PC chair all day really until its bedtime. If I try to walk my left leg/hip kinda gives out from under me and both legs feel as though they have led tied to them, so as I just stagger and nearly drop (plenty of ledges to cling on to. When I use the crutches the left leg tends to just drag behind in a silly manner.
I have this horrible pain right up my spine, and in my hip and weird travelling 'vein cramp pains' - I have no idea if that's what they are but it's the best way to describe it. What's more odd are the chest pains. They are fairly constant and like an electric stabbing.
Things might be ok tomorrow, or they might still be like this. As if I wasn't miserable before, now its just.. urgh. Tedious and frustrating.
A while into the Depo injection this happened, and now similar with the Cerazette (endo prevention option). I don't know whether or not to stop the tablets. They might be the cause somehow OR they may have nothing to do with it. I don't want to go onto Zoladex :(.
Another attack
Another attack occured when I was away from home and it was mortifying. I was at my sisters house, laying on my side on my neices bed playing Hello Kitty with her (she's 4). My nephew (11) was sitting just across the room. I suddenly felt like.. I was viewing myself from inside my eyes, totally zoned out, but not, if that makes sense. I couldn't really understand what was going on and as I saw my neice talking at me I couldn't form a reply. I realised I coudn't speak or make the mouth muscles work, and that the rest of my body wasn't responding either. My sister ushered the kids out of the room and dragged me further up the bed into a more comfy position. My face then dropped on the one side and I tried to talk to her but at that point all that came out was a slurred mess, which I guess is better than nothing. It was horrible, I never ever wanted that to happen in front of the kids and it really saddens me that it did. Later on my brother in law came up and carried me downstairs and plonked me on the sofa. Sister had told the kiddies that I had a toothache and was fine. My gorgeous little niece was so sweet and gave me stickers for being poorly. The spaghetti was lovely but kind tricky to eat when only half your mouth is working. Over time the symptoms improved. It came with no warning though this time, however I had been to London on no sleep the previous day and was absolutely shattered so it was inevitable. Seems that this time it was only a mild attack though. The next day they drove me home and I went back later the following week to stay and then drive my car back.
I think the hardest thing about all this is that I don't properly understand what the hell is going on so how can I accept it? I can't see how this is going to get better or how I'll be able to get my independence back that I had when I was 23. I can't work out what to do with myself. I keep reminding myself there is hope but it's kinda starting to fade. Then I think of all these people who would think me pathetic for whining about this. Yes I know I could have cancer or something terminal but.. Things have been shitty since I was 14 years old, I'm tired of this shite, the pain and the immobility! Someone jokingly said 'oh yea, benefit fraud soph' and.. I know they were joking but it still kinda hurt. They have absolutely no conception of what it's been like or how my the illness is. Yep, I know I look 'fine' some of the time.. and many times I look like the picture above. I don't go out or visit people when I'm busted so obviously they only see the 'normal' face. I can't help but be paranoid with how people judge me as I'm in the situation I described above and it makes you very insecure.
That's enough for now, will make an update on the lupus clinic visit a little later.
Tuesday, 20 January 2015
Facial Rash & Lurgy
Every few weeks or so I get these things appear on my face. It's been happening for a while now but it seems to be getting more regular. However, last month I was sitting on the PC minding my own business when I leaned my hand to my face and it was....wet? It seemed there was a patch of open skin just infront of my ear and another patch on the cheek. And then THIS happened...
What a pretty picture I was!At least the healing 'scar' was in the shape of a heart :). To add to this I had a lot more hair loss in the bath than usual. As I don't know what's normal or not it's hard to know if this is strange.
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I've had lots of nice peoples from the Health Unlocked forums offer suggestions, generally relating to Discoid Lupus, however I've emailed the pictures to my consultant to get his opinion. I've no idea when my next clinic appointment is as I have about three letters with the same postal date saying different appointment times. How confusing!
Recently I have been struggling and had another bad attack on Christmas day.
I hadn't taken my Raynauds medication by mistake and come the evening I ended up with pain in the left arm, zoning out, followed later by loss of mobility on the left side then facial droop, the 'usual'. Later the legs weren't working properly (again!) and I couldn't walk. Not the best Christmas evening ever. We had a Boxing Day meal with all the family and I just felt so ashamed and emarassed, once again carting myself about on crutches. On taking some extra Nifedipine the following evening as a test, I regained mobility in the legs, hooray. Coincidence perhaps but in the past it's helped with releasing the constriction in my neck and the voice loss. Vascular confusing? Hrm, who knows.
This week I've been unable to sleep at night due to the horrible 'pressurised' feeling I have all over my body. It's a pulsing, gurgling sensation that makes me feel very unwell - like I'm going to pop. I also have lots of pain in my lower back (right side) for which my GP has given me co-drydramol. Blood pressure was on the lower side of normal and I lowered Raynauds medication just in case it was that but it made no difference.
I'm very weak, extremely tired and often experiencing constant headaches/joint pain and nausea along with some very low moods. And I mean low moods, nothing like anything I've felt before. I spent two hours the other day crying so much my eyes were going to burst. I am more miserable than I've ever been and I look at myself and my shambles of a pathetic existence and..pfft. Well I'll probably be okay in a week or so and be back to 'normal'. The problem is, how can I go to a doctor and talk to them about this. Firstly I'm scared that they'll negate everything else thats going on and pile lables on me that aren't relevant. Secondly that they'll want to add more medication to the mix that will screw with my brain. I don't really understand how to explain that half the time I'm perfectly fine and the other half, desperately miserable. I don't want to be near people, I don't want to leave the house, but at the same time I'm very weak and in so much pain that I couldn't anyway. The point I knew that things were wrong in my head though was when I had to phone Three to cancel my contract. I got so anxious about making the call that I had a bout of IBS. Not good.
Anyway.
Everyone got it. I've not had a cold in like, 2 years? I thought, pfft, I'm immune! The local population has no conception of hygiene, literally none. The people spit on the floor, cough directly in your face and I doubt they bother washing their hands more than once a week. My number was up and it started. Week one was fine, usual cold stuff and a throat infection with weird horrible blisters in the back of my throat. It hurt but I took painkillers and got on with it. Sorry for the grim picture! Normal or not, hmm.. All I know is they were ouchie.
Eventually, I was fine enough to go get a bit of shopping but by the time I got home, my god I felt rubbish! Fever, chills, shaking.. the flu'ish drill. No fun at all. So I was stuck in bed for quite a while. It seemed to last a long time.
I think that's all updated for now!
I've had lots of nice peoples from the Health Unlocked forums offer suggestions, generally relating to Discoid Lupus, however I've emailed the pictures to my consultant to get his opinion. I've no idea when my next clinic appointment is as I have about three letters with the same postal date saying different appointment times. How confusing!
Christmas Attack
Recently I have been struggling and had another bad attack on Christmas day.
I hadn't taken my Raynauds medication by mistake and come the evening I ended up with pain in the left arm, zoning out, followed later by loss of mobility on the left side then facial droop, the 'usual'. Later the legs weren't working properly (again!) and I couldn't walk. Not the best Christmas evening ever. We had a Boxing Day meal with all the family and I just felt so ashamed and emarassed, once again carting myself about on crutches. On taking some extra Nifedipine the following evening as a test, I regained mobility in the legs, hooray. Coincidence perhaps but in the past it's helped with releasing the constriction in my neck and the voice loss. Vascular confusing? Hrm, who knows.
This week I've been unable to sleep at night due to the horrible 'pressurised' feeling I have all over my body. It's a pulsing, gurgling sensation that makes me feel very unwell - like I'm going to pop. I also have lots of pain in my lower back (right side) for which my GP has given me co-drydramol. Blood pressure was on the lower side of normal and I lowered Raynauds medication just in case it was that but it made no difference.
I'm very weak, extremely tired and often experiencing constant headaches/joint pain and nausea along with some very low moods. And I mean low moods, nothing like anything I've felt before. I spent two hours the other day crying so much my eyes were going to burst. I am more miserable than I've ever been and I look at myself and my shambles of a pathetic existence and..pfft. Well I'll probably be okay in a week or so and be back to 'normal'. The problem is, how can I go to a doctor and talk to them about this. Firstly I'm scared that they'll negate everything else thats going on and pile lables on me that aren't relevant. Secondly that they'll want to add more medication to the mix that will screw with my brain. I don't really understand how to explain that half the time I'm perfectly fine and the other half, desperately miserable. I don't want to be near people, I don't want to leave the house, but at the same time I'm very weak and in so much pain that I couldn't anyway. The point I knew that things were wrong in my head though was when I had to phone Three to cancel my contract. I got so anxious about making the call that I had a bout of IBS. Not good.
Anyway.
Lurgy
Everyone got it. I've not had a cold in like, 2 years? I thought, pfft, I'm immune! The local population has no conception of hygiene, literally none. The people spit on the floor, cough directly in your face and I doubt they bother washing their hands more than once a week. My number was up and it started. Week one was fine, usual cold stuff and a throat infection with weird horrible blisters in the back of my throat. It hurt but I took painkillers and got on with it. Sorry for the grim picture! Normal or not, hmm.. All I know is they were ouchie.
Eventually, I was fine enough to go get a bit of shopping but by the time I got home, my god I felt rubbish! Fever, chills, shaking.. the flu'ish drill. No fun at all. So I was stuck in bed for quite a while. It seemed to last a long time.
I think that's all updated for now!
Friday, 27 December 2013
Update & Dysarthria
It's been such a long time again!
Well, a trip to a friends house in Wales (mid November) resulted in my health going a tad downhill. It began while we went out to a few shops.. my legs went all 'gluggy', then shaky.. this feeling spread through me and, well, it's hard to put into words but it all felt wrong, chest and breathing wasn't normal. The lights went super bright and I knew I needed to sit down very quickly. Seems that if I stay sitting things get better.
One evening the strangling feeling returned in my neck and I couldn't speak. This lasted for 2 hours before I zoned out and went through all the 'suspect TIA' symptoms including the paralysis and face droop. I emailed the Lupus secretary and she passed this on to one of the other Drs there and phoned me back the next day saying that I'd need to be seen (privately) in clinic. Obviously.. I couldn't seeing as I was in Wales. Their other suggestion was to go to the GP to get checked. That also wasn't possible so I booked an appointment with my specialist (PK) for the following week.
This appointment resulted in very little. I was asked what happened, my legs were checked and pain in the lower spine was discovered (yet very unrelated). This became the focus of the consultation and I was dismissed with an MRI form for my pelvis... I'm not really sure why. My legs constantly ending up freezing cold seems to be irrelevant along with the other symptoms. I had a message on my phone from PK saying there was nothing wrong with the scan.
I missed my Lupus clinic appointment (phoned beforehand) because I'd had a rather nasty attack and couldnt actually make it there and they sent me a follow up appointment for August 2014.. wonderful. It seems any hospitals/doctors don't understand the concept of the patient actually being ill and the issues this results in when having to travel a long way from your home.
On 21st December, in the evening, I had a strange burning swelling come up over my lip (not sure if this is relevant or not!) .. this sensation was very odd and it looked like I'd been bitten. About half an hour later it had gone completely. I was eating some pineapple then my tongue started to burn really badly, I thought it was swelling so I tried to tell my parents and a slurred mess came out. I couldn't speak.. I was able to think the words fine, I felt fine apart from the burning but suddenly the words wouldn't come out. I could start words, make sounds yet the words would come out in 'pieces' and slurred stuttering mess and when I did get small sounds out, I'd repeat them several times without meaning to.
We hoped by the next day it would be gone and everything would be back to normal. It wasn't like a normal attack. Unfortunately it didn't go the next day, or the day after. So, on the 23rd December I went to the GP. She thought there may be a possibility that there had been a small stroke and thought it best that I go to A&E. She phoned them before hand and spoke to the registrar, gave me my letters to pass on. She told me that once I got there I wouldn't need to go into the 'usual' bit as I'd been checked and put a note on the envelope to bleep the registrar straight away.
Well, that was a joke. Obviously I couldn't speak so I tried to indicate to the receptionist that the Dr had said not to go into the normal 'system' but the receptionist was just a moody girl who was quite rude and disregarded what it said on the letter because it didn't match 'their system'. Not a great start. No matter if you have a letter or not, you go into the same system and wait just as long as having no letter. I don't know if GP's understand this but the same thing happened with my dad.
I think I waited 2ish hours until I was seen by the registrar (not even sure he was the one my GP had spoken to). He looked really really confused, didn't really know what to do with me. He wanted to get the stroke theory checked so said I would go to the stroke ward (oh god no.. ) have a CT that night then if it showed no bleed on there then have MRI the next day and be seen by the stroke and rheumatology teams. I just wanted to go home really, especially because the next day was Christmas eve and I had so much cleaning to do!
CT done, they moved me to CDU instead of the stroke ward, thank goodness! The hospitality and nursing staff were -so- nice! It was such a difference to when I'd been on the stroke ward. They made me tea and toast (I had an amazing knack to having scans over mealtimes) and were really kind.
Ward Dr: Lady doctor came round the next morning. Told me nothing had shown on the CT but she was sure it was probably a small stroke that I hadn't noticed. I would be having an MRI later that day and be seen by someone from the stroke team. She told the Jr doctor that whatever the result of the MRI, she wanted the stroke Dr to make a follow up plan. She mentioned the malformation of the brain but dismissed any involvement.
Stroke Dr: It was one of the doctors from my stay 2 years ago. He smiled and was friendly, said the MRI scan was 'mostly normal' and claimed it was 'my brain misfiring like last time'. Unfortunately I couldn't speak so there's not much I could say or do. The 'misfiring' of two years ago was actually a misdiagnosis related to the APS/Raynauds and the 'fucntional' diagnosis back then was made by a doctor I had never seen and didn't work in that hospital. This misdiagnosis also held up my actual diagnosis/provision of medication by a year as whenever a doctor saw 'functional' they believed it to be my brain making it up.
He then went on to ask about my mother... No follow up was given and no further involvement from the hospital or assistance in regards to my speech.
I'm really shocked that firstly, someone in that hospital role can be so narrow minded when 'diagnosing' someone. It was very clear that the medical staff did not understand APS or the medications that I was on, they didn't even have it in stock. Luckily I brought my own.
I can't really describe how frustrating and saddening it is not to be able to use your voice. Everything that's in your head can't come out, it just bottlenecks and your expression and everything your voice describes about you is trapped. You are suddenly limited to a few sounds, paper and typing. People so easily misinterpret what you are trying to tell them, yet you can't full explain. It's not just the words, its the expression and tone that you speak in. You never really know how important your ability to speak is until its taken away. So most of Christmas Day and Boxing Day was spent unable to speak and just watching.. but the main thing is I WAS HOME! :D
The fact is that since it's been colder the attacks and symptoms have increased. This is also around about the same time two years ago that I suffered with a similar loss of voice - just not quite the same. I also have problems when the temperature is too hot.
I already have Raynauds disease and auto-immune/connective tissue conditions. Things are not going to work as they should. We've known this from age 14 with my ovaries not working properly, then the Endo growing all through my abdomen. Now..this.
It is clear to me, and to anyone that knows me and has seen the attacks, that this is vascular. It can be displayed when I've got the voice 'strangling' by compressing blood flow it would result in the voice block moving and speech returning. Bending the neck in a certain position also results in the same. This can only be shown when dysphonia is active.
With this assumption in mind, last I found some spare Nifedipine 5mg capsules (normal release) and decided to test a theory. I'm currently on 10mg (modified release) twice a day. I took extra normal release Nifedipine and amazingly, soon after there was a sensation in my neck and the voice returned. This seems to only last for the duration of the capsule. If Nifedipine is used to enlarge the blood vessels then surely this has something to do with bloodflow or vasospasm in the neck area.
Is it really the cold causing this narrowing of the vessels, or something else which displays like Raynauds? With the added symptoms of APS and now (as written on my discharge letter) S-SLE. All I know is that each month, around the same dates I've had small attacks and voice loss. Could this be linked to Endometriosis or the Mirena coil? There's only one way to test this, but with the thread of Endo symptoms returning I'm hesitant to change anything. Either way I end up with horrible symptoms and treatment limited to the education/willingness of a medical professional.
I'm just -so- lucky to have had such amazing help and support from my parents and a few close friends, they've been incredible, even though they all have their own things to cope with. Without them I don't know how I would cope with all this, I really don't.
Appointments
Well, a trip to a friends house in Wales (mid November) resulted in my health going a tad downhill. It began while we went out to a few shops.. my legs went all 'gluggy', then shaky.. this feeling spread through me and, well, it's hard to put into words but it all felt wrong, chest and breathing wasn't normal. The lights went super bright and I knew I needed to sit down very quickly. Seems that if I stay sitting things get better.
One evening the strangling feeling returned in my neck and I couldn't speak. This lasted for 2 hours before I zoned out and went through all the 'suspect TIA' symptoms including the paralysis and face droop. I emailed the Lupus secretary and she passed this on to one of the other Drs there and phoned me back the next day saying that I'd need to be seen (privately) in clinic. Obviously.. I couldn't seeing as I was in Wales. Their other suggestion was to go to the GP to get checked. That also wasn't possible so I booked an appointment with my specialist (PK) for the following week.
This appointment resulted in very little. I was asked what happened, my legs were checked and pain in the lower spine was discovered (yet very unrelated). This became the focus of the consultation and I was dismissed with an MRI form for my pelvis... I'm not really sure why. My legs constantly ending up freezing cold seems to be irrelevant along with the other symptoms. I had a message on my phone from PK saying there was nothing wrong with the scan.
I missed my Lupus clinic appointment (phoned beforehand) because I'd had a rather nasty attack and couldnt actually make it there and they sent me a follow up appointment for August 2014.. wonderful. It seems any hospitals/doctors don't understand the concept of the patient actually being ill and the issues this results in when having to travel a long way from your home.
Dysarthria
On 21st December, in the evening, I had a strange burning swelling come up over my lip (not sure if this is relevant or not!) .. this sensation was very odd and it looked like I'd been bitten. About half an hour later it had gone completely. I was eating some pineapple then my tongue started to burn really badly, I thought it was swelling so I tried to tell my parents and a slurred mess came out. I couldn't speak.. I was able to think the words fine, I felt fine apart from the burning but suddenly the words wouldn't come out. I could start words, make sounds yet the words would come out in 'pieces' and slurred stuttering mess and when I did get small sounds out, I'd repeat them several times without meaning to.
We hoped by the next day it would be gone and everything would be back to normal. It wasn't like a normal attack. Unfortunately it didn't go the next day, or the day after. So, on the 23rd December I went to the GP. She thought there may be a possibility that there had been a small stroke and thought it best that I go to A&E. She phoned them before hand and spoke to the registrar, gave me my letters to pass on. She told me that once I got there I wouldn't need to go into the 'usual' bit as I'd been checked and put a note on the envelope to bleep the registrar straight away.
Hospital Again
Well, that was a joke. Obviously I couldn't speak so I tried to indicate to the receptionist that the Dr had said not to go into the normal 'system' but the receptionist was just a moody girl who was quite rude and disregarded what it said on the letter because it didn't match 'their system'. Not a great start. No matter if you have a letter or not, you go into the same system and wait just as long as having no letter. I don't know if GP's understand this but the same thing happened with my dad.
I think I waited 2ish hours until I was seen by the registrar (not even sure he was the one my GP had spoken to). He looked really really confused, didn't really know what to do with me. He wanted to get the stroke theory checked so said I would go to the stroke ward (oh god no.. ) have a CT that night then if it showed no bleed on there then have MRI the next day and be seen by the stroke and rheumatology teams. I just wanted to go home really, especially because the next day was Christmas eve and I had so much cleaning to do!
CT done, they moved me to CDU instead of the stroke ward, thank goodness! The hospitality and nursing staff were -so- nice! It was such a difference to when I'd been on the stroke ward. They made me tea and toast (I had an amazing knack to having scans over mealtimes) and were really kind.
Ward Dr: Lady doctor came round the next morning. Told me nothing had shown on the CT but she was sure it was probably a small stroke that I hadn't noticed. I would be having an MRI later that day and be seen by someone from the stroke team. She told the Jr doctor that whatever the result of the MRI, she wanted the stroke Dr to make a follow up plan. She mentioned the malformation of the brain but dismissed any involvement.
Stroke Dr: It was one of the doctors from my stay 2 years ago. He smiled and was friendly, said the MRI scan was 'mostly normal' and claimed it was 'my brain misfiring like last time'. Unfortunately I couldn't speak so there's not much I could say or do. The 'misfiring' of two years ago was actually a misdiagnosis related to the APS/Raynauds and the 'fucntional' diagnosis back then was made by a doctor I had never seen and didn't work in that hospital. This misdiagnosis also held up my actual diagnosis/provision of medication by a year as whenever a doctor saw 'functional' they believed it to be my brain making it up.
He then went on to ask about my mother... No follow up was given and no further involvement from the hospital or assistance in regards to my speech.
I'm really shocked that firstly, someone in that hospital role can be so narrow minded when 'diagnosing' someone. It was very clear that the medical staff did not understand APS or the medications that I was on, they didn't even have it in stock. Luckily I brought my own.
I can't really describe how frustrating and saddening it is not to be able to use your voice. Everything that's in your head can't come out, it just bottlenecks and your expression and everything your voice describes about you is trapped. You are suddenly limited to a few sounds, paper and typing. People so easily misinterpret what you are trying to tell them, yet you can't full explain. It's not just the words, its the expression and tone that you speak in. You never really know how important your ability to speak is until its taken away. So most of Christmas Day and Boxing Day was spent unable to speak and just watching.. but the main thing is I WAS HOME! :D
Theory
The fact is that since it's been colder the attacks and symptoms have increased. This is also around about the same time two years ago that I suffered with a similar loss of voice - just not quite the same. I also have problems when the temperature is too hot.
I already have Raynauds disease and auto-immune/connective tissue conditions. Things are not going to work as they should. We've known this from age 14 with my ovaries not working properly, then the Endo growing all through my abdomen. Now..this.
It is clear to me, and to anyone that knows me and has seen the attacks, that this is vascular. It can be displayed when I've got the voice 'strangling' by compressing blood flow it would result in the voice block moving and speech returning. Bending the neck in a certain position also results in the same. This can only be shown when dysphonia is active.
With this assumption in mind, last I found some spare Nifedipine 5mg capsules (normal release) and decided to test a theory. I'm currently on 10mg (modified release) twice a day. I took extra normal release Nifedipine and amazingly, soon after there was a sensation in my neck and the voice returned. This seems to only last for the duration of the capsule. If Nifedipine is used to enlarge the blood vessels then surely this has something to do with bloodflow or vasospasm in the neck area.
Is it really the cold causing this narrowing of the vessels, or something else which displays like Raynauds? With the added symptoms of APS and now (as written on my discharge letter) S-SLE. All I know is that each month, around the same dates I've had small attacks and voice loss. Could this be linked to Endometriosis or the Mirena coil? There's only one way to test this, but with the thread of Endo symptoms returning I'm hesitant to change anything. Either way I end up with horrible symptoms and treatment limited to the education/willingness of a medical professional.
I'm just -so- lucky to have had such amazing help and support from my parents and a few close friends, they've been incredible, even though they all have their own things to cope with. Without them I don't know how I would cope with all this, I really don't.
Tuesday, 15 October 2013
Conference Speech
Recently I attended a medical conference in France, where I took part in a presentation (by my GP) in regards to my 'journey'. The focus of the presentation was to encourage patient participation with their diagnosis and treatment.
The whole experience was.. new! I made it through a plane journey (yeeey) and didn't feel like I was going to pop on the plane like an overcooked hot dog. Made it there and back again, with a few bumps along the way, but what matters is that I did it! Big steps.
Anyways, I'll do a proper write up later but this is the little speech that I did as part of the presentation:
"The truth is that whether its the right thing to do or not, more and more patients are using the internet to research symptoms. Sadly it appears that a vast amount of confidence and trust is missing between Dr and patient - most probably due to the outcome of a consultation, innacurate medical letters or the manner in which the patient has been treated. Patients in this situation seeking answers or information will inevitably use the internet, and with this reality in mind, I believe it’s crutial to encourage the best use of his tool possible, with the GP’s support. However, I feel its more important to have a good relationship with your doctor that allows discussion, without the risk of being seen as a self diagnosing, anxious, hyperchondriac and allowing the patient some credibility in their research. One doctor can not know every detail about every illness, and the unwillingness of some medical professionals to accept this has cost me over 5 years of my adult life.
Most people i know feel that they can't even talk to their doctor, they are simply not interested or don’t have the time. I believe that working with your doctor can minimize the risk of finding ‘worst case scenario’ situations online which could give the patient some peace of mind. This alone could save precious time, which may have lead to a spiderweb of unnecessary appointments and tests in an already heavily strained medical system.
I know for certain that without the trust of my gp, the advice from members on healthunlocked and my own perseverance and research, I would not be healthy enough to come here today or have access to the medication that's given me back some of my life, with all the above going against what I'd been told to do by various consultants.
For me, the Internet has played a crucial part in my diagnosis and treatment, for which I am unbelievably grateful. "
More soon!
The whole experience was.. new! I made it through a plane journey (yeeey) and didn't feel like I was going to pop on the plane like an overcooked hot dog. Made it there and back again, with a few bumps along the way, but what matters is that I did it! Big steps.
Anyways, I'll do a proper write up later but this is the little speech that I did as part of the presentation:
"The truth is that whether its the right thing to do or not, more and more patients are using the internet to research symptoms. Sadly it appears that a vast amount of confidence and trust is missing between Dr and patient - most probably due to the outcome of a consultation, innacurate medical letters or the manner in which the patient has been treated. Patients in this situation seeking answers or information will inevitably use the internet, and with this reality in mind, I believe it’s crutial to encourage the best use of his tool possible, with the GP’s support. However, I feel its more important to have a good relationship with your doctor that allows discussion, without the risk of being seen as a self diagnosing, anxious, hyperchondriac and allowing the patient some credibility in their research. One doctor can not know every detail about every illness, and the unwillingness of some medical professionals to accept this has cost me over 5 years of my adult life.
Most people i know feel that they can't even talk to their doctor, they are simply not interested or don’t have the time. I believe that working with your doctor can minimize the risk of finding ‘worst case scenario’ situations online which could give the patient some peace of mind. This alone could save precious time, which may have lead to a spiderweb of unnecessary appointments and tests in an already heavily strained medical system.
I know for certain that without the trust of my gp, the advice from members on healthunlocked and my own perseverance and research, I would not be healthy enough to come here today or have access to the medication that's given me back some of my life, with all the above going against what I'd been told to do by various consultants.
For me, the Internet has played a crucial part in my diagnosis and treatment, for which I am unbelievably grateful. "
More soon!
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