Purple spot!

Today is not such a good day. Started off by having a shower and donning some DVT stockings afterwards to see if this would help my legs at all as the pharmacist recommended this a couple of weeks ago. I got ready and went with my step mum to the local supermarket to get some bits and have lunch. Almost immediately I noticed a pain on the top of my left foot. Soon after, another pain started in my back, right hand side just below my shoulder blade. When we sat down to eat I noticed a purple blob in my right hand, below and to the left of my knuckle. I don't like the appearance of something like this as it looks very similar to the dark purple lump that appeared on my kneecap after I was thrombolysed. After we ate it was time to pick up a few bits but soon I got another pain, the same as the other two in my head and I started to feel quite sick. I can feel the left side of my mouth weakly trying to pull a bit but it's not gone into the usual droop/spasm. I don't like this, it's worrying and I don't understand what's going on :(. Functional? I don't know about functional purple blobs.

Early Attack

This is one of my earlier attacks last year. They were very scary at the time as we hadn't got much idea what was going on. During the video my face was having quite a violent spasm, I also was unable to speak properly, see properly or use my legs as they would just collapse out from under me.

Voice is back! Yey.

My voice came back for a bit earlier today, yey! Sadly, after just moving a couple of boxes I began to shake and feel quite unwell.. then the voice went away again. Ah well, fingers crossed for feeling lots better tomorrow! The post I mention in the vid is below :).

Hand Spasms, Voice Loss & GP Visit

I've just got back from the doctors, it might not seem like a mammoth effort but for me it seems to be. I was falling asleep in the waiting room, I don't even know why I'm so tired. When the thingy bleeped and I got up to go in it was like a truck had hit me or something (rubbish description!). I was so dizzy I thought I was going to fall over. Going to the GP with no voice is even more of a challenge. I went in and the first thing she said was 'it's not that cold out there surely?', so I nodded and sat down. I passed her the note I'd written which went along the lines of:

• Repeat prescription with added nifedipine during the day along with the time release morning and night.
• Not knowing what to do in terms of the FND as I'd written to the consultant saying that the insurance wouldn't cover her referrals, yet heard nothing back from her in about two weeks.
• Increased cramping in the feet, always cold from the knee down and unable to feel temperature in lower leg. Also increased nerve problems, including the groin nerve thing then the swelling in the knees and lower leg with the blotchy pattern. 

I think it's a big ask to have a 10 min appointment and go into your GP with something like the notes above but she was brilliant. She began by going through the presctiption and sorting that out.

 As far as the FND stuff goes I believe it's seen as a 'closed avenue' for now. Seeing as the consultant neurologist spent such a long time telling me how bad and serious FND was, then didn't know who to refer me to. Then once she'd suggested people working in the same building as her were refused by Bupa to ignore the patient and not suggest NHS alternatives.. well.. it doesn't seem quite right. 

I tried to talk to my GP as best as possible (even though my head felt like it would explode with the pressure) and explain the consultation with the neurologist a little more. She seemed unconvinced that in such a short space of time the consultant could ascertain enough information to justify that diagnosis. Some things fit very well with FND but some things don't. When I showed her the photographs of my legs she asked if the consultant had seen them. I said no, and that she wasn't interested in my other conditions or vascular stuff.  My GP didn't seem to be convinced that these had anything to do with FND. 

So she's given me her email address and the next step is to look into vascular consultants at some of the bigger hospitals  in the city so hopefully they will be able to look at this and see what's happening. Who knows.. something might come of it, something might not. 

As far as my APS tests have gone, I thought they'd come back negative but turns out the results weren't in yet. Hrm...

Phoned the chemist and ordered in my meds, yey for sorting stuff.

My mind is all over the place at the moment so I just don't know what to think! Erk. I'm going to try and do one more thing productive today and then watch something nice and take my mind off things for a while.

Oh yes, so I was really upset last night. I'd attempted to go to my sisters and have a nice day, I tried to 'rest' as much as possible throughout the day but that wasn't really effective. At about 9pm I started to feel a bit tremmory and ill. The drive home wasn't too pleasant, I think it's made worse by all the whooshing headlights so in future I need to not drive in the dark. When I got home I realised the huge pressure in my head was back and I couldn't speak. I was so tired by when I lay down in bed my neck was so uncomfortable and I just felt so ill, then the migraine-headache thing set in. So, I fell asleep with my head on a hot water bottle and listened to my pain management hypnosis, which at least got me to sleep. I'm waking up about 4 times a night now with back spasms which isn't pleasant but at least its not the bowel endometriosis, ach! I'm still thankful every single day that I'm not in that much pain any more.

Anyway, here's a vid of how the voice was last night [13th March]. It was veeeery hard to talk :/ that's what I get left with after just trying to have a normal day. Not happy!

The night before last I began to get weird hand spasms so I madde a little vid of that too. Exciting huh?

Everyday, something new..

Let's cover the good things about today! My big achievement was getting the ironing done. Now that may not sound like much but it required standing for quiiiite a long time. I managed to keep myself from getting bored by watching Game of Thrones on the laptop. Nearly caught up so I'll be ready for season three. With that done I really wanted to try and stay on my feet for a bit longer so I did as much as I could to sort the room out for the weekend. Problem is with this is that I only ever seem to do part-jobs, then knowing that I will have to finish them off is kinda daunting but I know it will get done. Hopefully I'll be okay to do more tomorrow *fingers crossed*. I did my best and I'm proud of it. Another great thing that happened today is that my USB slippers came, hooray! They are yummy. Hopefully, if I do feel okay tomorrow I'll do a little video and rave on about them.

The not so good stuff. Well the odd groin nerve thing continued. It's really not pleasant. Later that night in bed I realised that one leg was warm'ish and the other was very cold. I couldn't feel things properly then realised that it was because my leg had gone 'dead'. I really don't know why, it made no sense to me. I tried to just ignore it and put my pain hypnotherapy on. Up at 6:15am feeling rather off colour but managed to get a little more sleep. The foot cramping was more constant today, I don't even know how to stop it but the slippers certainly help with the pain :). Glands were really painful as was my jaw, I still don't know whether to get the freak teeth checked, hrm. The newer thing is these huge walls of tiredness that just hit randomly.

Anyways I've been talking with a friend, venting a little and she's urging me to give talking, reading doing medical related things a bit of a break as it's bad for my brain so for once I will listen. I don't know how these people put up with me but I'm very very happy and lucky that they do.

Getting there!

Progress on this blog is slow.. very slow! I've spent a lot of the day thinking about FND and then a big chunk of it going over my previous conditions and trying to include everything that happened last year relating to the functional stuff. It's actually really stressful so I did some stuff to take my mind off it but yet just before going to bed my brain comes straight back to reading bits and still thinking what needs sorting out. The more I think over the situation the more I question everything. Especially after today's addition of nerve problems in a new place. I don't understand why but again it points straight to neuralgia and compression. I wish I didn't have to think about this stuff and that things would just be normal but how do I do that when I've got electric shocks zapping me. If there has been a mistake and there is nerve deterioration then at least I can try to help this before it gets any worse. All the functional stories that I've read have similar elements to my story and yet are very very different, the more I read the clearer this becomes. I guess me writing this shows the mental struggle to completely trust a diagnosis given to you by someone who know's nothing about you :/. Anyway, hopefully I'll have the 'about me' section done by tomorrow and then I don't have to think about that stuff for a while \o/.

Dysphonia On-Off Switch

This video was taken by my dad last year. It seemed that when I compressed a rather lumpy vein in my head, it released the pressure on the vocal chords and returned to normal.

I was told by a doctor recently 'there is absolutely no way that there is a physical explanation for this.' Apparently this particular neuro-psychologist was an expert in all medical conditions known to man.

It's really really strange though because I genuinely feel the changes. You can hear them too, there's no trick involved. Ice cream can also make my voice go instantly (I've done a vid for that too). A few things can alter my dysphonia such as sitting and standing, temperature and pressure on the veins.

Facial Spasm

This happened shortly after recording my first video. I'd been sitting for a bit, stood up to go downstairs and sort out my washing, which is a mission in itself, then my face started to yank to the side. It eased after sitting down for a while but when I stood back up again it came back! How lovely. 

The 1st YouTube Upload!

The first video post is done, yey! I wasn't expecting to be feeling so rubbish today or have lost my voice but I saw it as a good opportunity to get the blog started. As I say in the YouTube comment it was very hard for me to talk throughout the video and think. I know that sounds silly but I'm not used to talking at camera's sitting on the desk when there isn't anyone else there. When I'm ill too it gets increasingly hard to think and form proper sentences. Everything just slows down.

So today I finally managed to get the blog together and I'm pleased with the outcome of the banner :). It will most likely end up with me blabbing on/croaking on to the Internet but I have a hope that it might help something in the greater scheme of things. If it helps one person, I'm happy. I'm not a 'well' bunny and I haven't been for a while but I'll try and get the 'About Me' section done tomorrow so that at least that part makes partial sense. For now I'll just keep working on getting some videos and photos up then sort some other bits.

That's it for now!