Dysarthria & Raynaud's

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.

3 Replies

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  • Lordy! How dreadful an experience. You sound so hamstrung by your inability I to express yourself verbally and yet your written account is so articulate. It just goes to show how ignorant some people are and you really do not need this in the medical world we are so relying upon.

    I have had similar barriers put up because I was to ill with my back to go into hospital and resultant lay had no further appointment issued to me. My Gp was forced to write to the hospital before a further consultation was afforded me. Bless you. I hope you are treated for your condition properly and see a medic with the commitment and compassion you deserve. Keep us posted won't you.

  • This is very interesting reading. Do you take nifedipine? I know that on the leaflet for that, under 'dont's' is don't eat grapefruit.

    Although of course you were eating pineapple, it seems a coincidence that all of the resulting agonies you went through originated there. You may have eaten pineapple many times in the past, but it may have been the 'trigger' that began all the subsequent events.

    I am not a medic, I just thought I would offer a possible explanation as to how this situation may have arisen. Please let the forum know how you got on, take care, and have a happy New Year.

  • I'm so sorry to hear about our ordeal, and hope you get some answers in the fullness of time.

    If you are in the UK, you could get PALS to investigate the treatment you had, and the lack of any follow up. If you don't want to do that, you could put a comment on the hospital page at NHS Choices. The hospital will then get back to you.

    Good luck!

    Kathy

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