Thursday, 20 July 2017

This is a temporary state

I am struggling physically struggling at the moment. Mentally other than being frustrated by my lack of ability to do much, I am ok. I am so exhausted all the time it can make putting a blog post together extremely difficult. I can’t really concentrate and my mind wanders. So today’s offering is going to be short and sweet. It's frustrating as I have a few pieces I want to write but just can’t, my arms won't work properly to be able to type and my speech is buggered after a while so the voice recognition software I have installed is making a real hash of things or maybe it’s just me?

I am still currently waiting for an appointment to see the neurologist. Last Friday I emailed my PoTs consultant, as I wanted him to know that the mestinon was resolving my ptosis (as it always has) and that I was only taking half a tablet, 30mg as I know what a number 60mg does to me. A whole tablet works wonders on my whole body, it relieves the weakness and brings me back to my normal levels. However 60mg comes with consequences due to the bowel adhesions I have riddling my abdomen. To be blunt it feels like I am being disemboweled when I take 60mg, I don’t have diarrhoea or sickness with it, it just feels like someone is trying to extract my intestines through my belly button for around 4 hours at a time, until the dose wears off. I explained this to my consultant, who ideally would like me to take 60mg up to 4 times a day. You can understand my reticence.

I received an email back an hour or so later, letting me know he had forwarded on my email to the neurologist that he has referred me to. He was obviously keen to let her know that the mestinon works. I had explained to him in the email that I had taken a bit of a nose dive since I had seen him. I then panicked and must’ve read and re-read the email that I wrote making sure there was nothing in there slagging off neurologists. Neurologists aren’t my favourite brand of medicine, I have been treated appallingly by some in the past, although I landed on my feet with my neurologists last year.

On Sunday morning I received an email from the neurologist, which surprised me. I hadn’t expected any kind of response from her at all. She wanted to know if I had my appointment through yet to see her and could I let her know as she would chase it up. She wanted to see me as soon as possible. She also asked me to ask my gp to prescribe a medication called propantheline, this would hopefully stop the awful cramps / pain I am getting when I take more than 30mg of mestinon. Both she and my PoTs consultant want me on 60mg four times a day as soon as possible. I have taken propantheline before and it has been effective. I am hoping that it works, if and when it is prescribed.

So really that is all that is happening at the moment, I am just trying to keep myself on an even keel, not push myself to do stuff and try to not get too frustrated when my body refuses to obey my commands. As my husband told me this week in one of his profound moments “this is a temporary state”.

Voting (endorsements) have started on the WEGO Health Awards, my blog is up for Best in Show. If you enjoy my blog and have 30 seconds spare please click on this link and vote for me


Many thanks.

Thursday, 13 July 2017

Limbo

Currently I am in diagnostic limbo, awaiting tests to confirm or deny the diagnosis of Myasthenia Gravis (again). It is a deeply frustrating time, whilst I wait around for my first appointment, I am essentially in no man's land. Technically until proven otherwise there is essentially nothing wrong with me yet those who know me, know that what is happening at the moment is beyond my normal levels of crap health.

The hoops have already been set for me to jump through. Although my consultant has written to my gp requesting that he / she prescribes mestinon for me to alleviate the worst of my symptoms. A drug that is also used for PoTs although in this community it’s known as pyridostigmine bromide as it raises standing blood pressure. You’d think I was asking for crack cocaine to be prescribed. On Tuesday evening at 17:30 I had a phone call from the doctor's surgery asking me to book an appointment to see my gp as the gp “wanted to speak to me about pyridostigmine bromide”. Now I maybe way off base but to me this doesn’t sound good. I raised the possibility of MG with this dr back in May and was essentially ignored, now they want to discuss it? I have never had an issue with my consultant asking my gp to write a prescription and it necessitating an appointment to discuss it.

* * *

I started writing this post on Saturday morning and was too ill to continue writing it. As you can probably tell I was a little wound up by the prospect of having to do battle with another doctor so soon. I have been getting weaker over the last few days, finding my legs turning to jelly along with my arms. The stress of waiting to see the doctor yesterday didn’t help. By the time it came for me to leave the house, my ptosis was the worst it's been in a while with it also affecting my mouth, causing me to drool.



As it turns out I got myself all worked up for nothing. The gp wanted to ensure my understanding about Myasthenia Gravis, Pyridostigmine Bromide and to work on a plan for if I was to get worse before seeing the Neurologist. That was a weight off my mind, I am so used to having to attend an appointment and be prepared for a fight when it comes to MG, I couldn’t see it going any other way. It was such a relief. I know that the neurology appointment is a different kettle of fish but for the time being I can relax a little and work on being a bit more stable. I have had 19 days of ptosis (I still can’t believe I coped with this for nine months solid in the past) but now at least I have the medication to stop it in its tracks.

I decided to hell with it all yesterday on my personal Facebook feed and posted the photo that is above (but a colour version). I explained that Myasthenia Gravis was back on the cards again and that this is what I had been dealing with on a daily basis for 18 days (at that point). I always try to distance my own page from my health as I have had some really awful stuff said to me before. I tend to keep most things limited to my blog or my Myasthenia Kid Facebook page, so that people can choose to follow or not. I shouldn’t have to do that but I do because society can’t cope with an illness that doesn’t get better. It doesn’t understand that you can have good days and bad days. I find it easier to self censor than face the bullshit that comes with being honest. Sad but true.

So this is going to be a very short post as my arms are shaking from using the chromebook and I feel like crap. I can’t lie. Mestinon has been started and the same results as ten years ago achieved, as in my ptosis resolves within 20-30 minutes, longer if I am really bad and the weakness in my limbs lessens.

I did have a wry smile yesterday when the gp added to my notes “Myasthenia Gravis” but then I have been here before. Still currently officially in limbo.