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.
