NUMB

Having waited over two weeks to hear from the Oxford Dr, I emailed him. It took 2 days for a reply and from the tone of the email, I knew he was washing his hands of me. I won’t bore you with the details but it told me I could speak to his secretary on Monday to discuss the contents of the letter.

I rang Monday morning and then the bomb was dropped on me. He doesn’t think I have MG, he’s passing me back to Dr X and he looks forward to hearing about my progress under Dr X. The same Dr X who has refused to see me since August, gave me lamotrigine that made my hair fall out and gave me the trash can diagnosis of cortical plasticity. Which if you try and look it up on the internet doesn’t really exist.

As I wasn’t getting the full report he would be sending to Dr X, I emailed his secretary and asked for the report to be sent to me. I need to know what he thinks is wrong with me – I’m guessing its functional symptoms. I’m so angry right now I don’t have any emotions. I’ve just shut down and I just can’t deal with anything. I’m in shock I guess.

I’ve been given the opthalmologists secretaries number for a copy of his report but I think I’m going to write to him because I want some answers re my eye movements and what his differential diagnosis would be.

At the moment I’m trying to get the strength together to pick myself up and carry on but its hard. No one, not even family can appreciate the depth of hurt, frustration or anger I feel at the moment. No matter how hard they try or how understanding they are. It isn’t happening to them.

I just been lied to over and over again by the medical profession. First it was IV steroids then that never happened. Then it was a plasma exchange, that got dropped after the first letter. Then it was you are very ill and I want to help you and now I’m dropping you and sending you back to Dr X.

What the hell do I do now? I’m running out of options and I’m not prepared to be written off at the age of 36. The thought of living my life like this for the next 50 years is not something I want to contemplate. I feel like Im being punished for wanting to get a diagnosis and get well. How can that be right?

Advertisements

pain in the neck!

Hi, it took a few days to happen but the crash came yesterday. I slept most of Sunday, I woke up feeling pretty weird and hubs noticed and sent me back to bed. My legs were very weak and shaky and I was struggling to keep my head up.

Today I feel a bit better but I’m very sluggish. My neck is killing me its getting to the point where I am just going to have to go to bed and lay down. I’m wearing a neck collar but the muscles in my scalp, neck and upper back have just had enough. The strain my neck is under keeping my head up is giving me constant headaches. Its so annoying as I just dont know what to do with myself.

Its so nice to be back on the mestinon and have both my eyes open! What a treat! Unfortunately as you can see the mestinon is doing nothing for my neck.

I’m now waiting for my letter to arrive from Oxford with the Dr’s report. Having had a bit of a hunt around on the internet today I can see that my eye exam was classical MG with occular involvement. Whenever I did an upward gaze my eyes twitched like crazy. But who knows the eye Dr said last time it was MG and was completely over ruled. The longer I wait for the report the less hopeful I get.

I emailed Dr Y today with the issues surrounding my blood pressure and the funny turns I keep having. Hopefully at some point he will get back to me. Who knows!

Thank you for following my blog, its nice to know people out there are reading it.

Im Back……

I got back from Oxford yesterday but I was too tired to update you on what happened there. Ive spent most of the day in bed today and have rested loads, hopefully this will prevent my predicted crash from being too bad.

On Sunday 7th March I rang the hospital to see if there was a bed available so we could start our journey as planned at 0630hrs. I was told that they were 2 beds over and were cancelling all admissions other than emergency surgery. So things didn’t look too good. My mum had a brain wave and said to contact the Oxford Drs secretary and see if they would do the tests with me as an outpatient and we would stay in a hotel. I rang the ward on Monday morning and they were unhelpful to say the least. Told me they would ring back……well I’m still waiting for that phone call. I rang the MG nurse and left a message. Then I emailed the Oxford Drs secretary, it was a go. They were more than happy to see me in their day investigation unit and we would stay in a hotel. I hasten to add we were paying for the hotel !

We had to be at the hospital for 8am on Tuesday morning. At this point I had been off mestinon for 6 days and felt awful. Both eyes were closed and my body ached all over. I climbed onto the bed in the unit and curled into a ball. When they took my blood pressure it read 88/54, normal is supposed to be 120/80. Anything below 90/60 is considered low. Nurses were panicking apart from the dopey one who did the blood pressure and I’m going to name her as she is actually dangerous to patients – Lilly, now shes either mentally disturbed or on drugs either way she should not be a nurse who is unsupervised. Lilly didn’t bother to tell the nurse in charge of the ward that my blood pressure was low or make notes on the drugs I am allergic to. In fact she didn’t even respond when the emergency alarm went off. When questioned she said she didn’t know what the alarm sounded like. When Kelli an absolute angel of a nurse found out about my blood pressure she went mental. Demanded Lilly get me some water – which she didn’t so another bollocking from Kelli. She also made her re do the blood pressure on a different machine in case there was a fault with the other machine. My blood pressure had risen to 100/70 I was starting to feel better, but that now explains the funny turns I have been having for several months. Obviously my blood pressure keeps dipping, the scary thing is I was lying down when it was taken, I think I may have passed out if I’d been standing!

At around 0930 a hoard and that is the only way to describe it, descended in the bay. It was 15 students and 5 Drs. This was Dr E who told me two years ago I had Myasthenia Gravis, but backed down when his superiors told him I didn’t. I had the most thorough eye exam I have ever had. It must have lasted around 20 mins. Both my eyes were closed when he arrived and most of the session was spent with either me or Dr E trying to hold the lids up. Apparently I have classical MG eye movements. Also at last the Drs have realised that both my lid and the brow droop and its not the drooping brow causing the eyelid not to open. I have double vision which they can see due o my eye movements. My eye lids flutter when looking up and also my lower lids try and go up when I try to sustain an upward gaze.I also did the ice pack test which was postive. The medical students loved this as they hadn’t seen it before. This time the Drs had their own ice and didn’t make my mum run to the shop and buy a tub of ice cream because the Dr’s couldn’t be bothered to walk to the other end of the hospital to get some ice! Yep the honest truth they would rather not do the test than have to walk and get the ice.

Although MG wasn’t mentioned in front of me it was dicussed very loudly as they walked away ! Plus my hospital notes had in blue pen Myasthenia Notes written on them! They managed to leave the notes behind so my mum had a good nose through them. Unfortunately the letter I wrote to Dr X complaining about a different Dr at Oxford had been conveniently faxed to them by my GP. Oh yeah that means they will see me without baggage! Luckily the treatment I have recieved so far hasn’t been hostile!

On Tuesday afternoon I had my 5th SFEMG. Unfortunately on my right cheek I have developed a sore where my right eye just waters continually. Dr K decided to cleanse that area with an alcohol wipe before inserting the needle. My god did that hurt! He apologised profusely, he is a nice chap just a bit eccentic I think. He did the sfemg in my arm also and managed to hit a nerve. So I am sorry to say out of the three goes you have had on me that was the worst one. It must have been an off day as usually these tests performed by you are painless!

After that we were allowed to leave the hospital so we returned to the hotel. I wold have slept but I came down with an upset stomach so not much sleep had by either of us.

Wednesday we were back on the unit by 0830hrs. The nursing staff were the laziest nurses I have ever met, all they did was sit at the nurses station and talk. Their conversation wasn’t even about patients, it was about food/drink and holidays, so not actually medically necessary, when they should have been looking after their patients. I had no obs done, they hadn’t collected my meds from the pharmacy, no heart monitor was ready and to top it off I didn’t have anything to drink all morning. We didn’t see anybody until one of the Oxford Dr’s students came in to get a cannula in ready for the test. It was really amusing listening to the junior Dr reading the nursing staff the riot act!

At 1130hrs Dr E, My Oxford Dr, 2 other high up Drs an anesthetist (sorry spelling) and two nurses plus a video camera arrived at the end of my bed. The hospital hasn’t conducted a Tensilon test since 1999 so they wanted to video it for prosperity. Most patients have anti bodies or SFEMGs that are positive. I think the rest of us are just ignored, unless you are prepared to make a fuss like me! Dr E did another eye exam on camera and also the other Drs were very interested in this. Particularly the one that said my eye movements were normal 2 years ago and said my eye lid fluttering was down to spasms and cognitive behavioural therapy would cure it!

The Oxford Dr had decided to do the Tensilon test as a double blind so only the anesthetist knew which syringe contained the tensilon. I was set up to a heart monitor, as the drug can slow your heart rate and in extreme cases can stop it altogether. My heart rate was so high they had to silence the machine, it was over 100 bpm due to my anxiety with this test. The test was conducted very formally with a stop watch being used to time everything down to the last second, RDE staff take note thats how a tensilon test is supposed to be carried out. There were three drugs that would be injected.

When the first drug was injected they just put a little bit in first and then waited for a minute and then gave the rest of the dose, this is then repeated for all the drugs. When the first drug was administered my heart started beating hard in my chest. As it was a double blind test I can only guess that this was the atropine, a drug they administer to speed up your heart as the tensilon slows it. Normally they let you know what they are doing with this as its not a nice feeling, but I think they were just trying to be clever and add some more mystery to the test. Another eye exam was done and it was agreed that there was no improvement. The second drug was then given. My heart was fluttering all over the place and I felt sick. I’m pretty sure this was the tensilon. It was administered slowly so I didn’t get a massive hit of it like I did at the RDE. All of a sudden my eye opened, brow raised. The Drs went really quiet and then they repeated the eye exam which was nearly normal I still had some issues with eye movement. My eye stayed open for quite a while much longer than the previous test. The third drug was administered and nothing happened. I believed that this was saline the placebo.

I do find it very odd that the test is conducted with a placebo, its almost announcing to the world that they think the majority of patients with MG have mental health issues until proven otherwise! Plus it sort of breaks UK rules on Drs not being allowed to prescribe placebo’s. Obviously there is some way that they get around this.

The Drs wouldn’t discuss the results with me and to be honest I didn’t press them. I’m fed up with being a lab rat! I maybe wrong, but the student nurse I had gave it away when she said I couldn’t believe how your eye opened when they gave you the drug. Also as the MG nurse left she gave me her number to ring her on in the future so she could respond to me more quickly. So I’m not sure if it was a positive test, all I know is that my eye opened.

I had obs done before I left, I did ask them why they were bothering when they hadn’t been done all morning. Blood pressure was 104/80 so still low despite the fact I had been lying or sitting all morning and had just been through an extremely stressful test. My pulse was 98 bpm so that was taking its time to come down. My mum told me my heart rate had gone over 135bpm at one point during the test.

So we drove home after all this it took about 3 hours for me to get home. I have to say a really big THANK YOU to my mum for driving me to Oxford. A three hour drive is massively outside her comfort zone. Thank you so much mum you are a star!

Count Down

This will be my last post until I return from Oxford.

I’ve been off mestinon for 3 days now and feel dreadful. So far I have had no issues with my breathing but this is probably due to the fact I have either been lying on the sofa or in bed.

I think you can tell how much I’m looking forward to this trip by the fact my bag isn’t properly packed and my wheel chair hasn’t been cleaned. Every time I think about this trip I feel sick with nerves.

I’m hoping that I will get somewhere this time but I’m not hopeful.

Wish me luck xxxx

Yuck!

Just when I think I’m in a place where I will be able to update everyday – then the crash comes. Since the last blog posting I haven’t been out of bed for more than 5 hours a day.

I started feeling really weak and useless last week. I couldn’t put my finger on what had started it. By Saturday I realised I had a kidney infection. My kidney infections don’t present in the usual way and always catch me off guard. I start with a stomach upset, which I can get for a variety of reasons – too much wheat or an increase in my mestinon will usually do it so I brushed it off. Then I get a pain right where my appendix is, all the time not having any burning when urinating or pains in my back. By Saturday I started feeling generally run down and the pain in my back started. Due to the issues with antibiotics I decided not to run the gammet of the locum GP who would have no access to my notes. So I rang the Drs on Monday and got some antibiotics from my own GP.

I’d got my husband to go out and buy some plastic beakers you know the disposable kind as I had nothing in the house that I could use to catch a sample. That makes it sound like you have to run around the house trying to chase it down! As it was the GP didn’t ask for one. We went through the issues that I had developed with the antibiotic Augementin and settled for another one Cefradine. I found out after taking it that your not supposed to take it if you have an allergy to penicillin, which we thought I may have after the reaction to Augementin. So far no reaction so it looks like Im not allergic to penicillin its just something to do with Augementin.

We are on the countdown now for next weeks Oxford trip. Hair has been dyed as roots were showing and a few grey hairs had started to sprout! Just have to pack my bag and sort out toiletries.

My bloods taken after the last bout of stomach pain in the gall bladder area have come back negative. No surprise there then!

Apparently the Oxford Dr wants to hold off on my referral to the London Pulmanologist until he has seen me next week. Found this out from my GP on Monday.

I’m really not looking forward to my trip, I’m expecting a few sleepless nights before we set off!