I can’t believe that I haven’t been on here for more than a year. Things have been pretty tough in a lot of ways and when I started this blog I had no idea how this journey was going to pan out.
So whats been happening? Well I started the blog in June 2008 when I had just spent a week in hospital. I was put on Prednisolone which helped to begin with and then I just started to get worse. It wasn’t the transient weakness that some MGers have. This was an exascerbation of the condition. On top of that I was battling my now ex employers and starting a case against them for disability discrimination.
As the months went by I lost contact with more and more people. People that you thought were good friends and would do anything for you started to disappear.People that you had helped and stuck your neck on the line for, people you thought you would never lose contact with. They seemed to think that just asking your husband how you are when they see him is good form. Picking up the phone would be nice or popping around for a coffee even better. I spend 9 hours (at least ) a day, five days a week alone. Do you know whats crazy? The doctors in my neck of the woods think that I do this for attention. What attention? I live almost in exile from the rest of humanity.
In January 2009 I suffered what is close to what people with MG call a crisis. It happened over the space of a couple of hours. It felt like someone was pushing on my chest preventing me from breathing. We called an ambulance and when they took my oxygen saturation level its had dropped to 92%. I was wacked on Oxygen and at some point during the journey I started to lose consciousness. I could hear the guy talking to me but I couldn’t respond. With that lights and sirens started. It wasn’t scary I just couldn’t understand the panic, I could here them but I was swaythed in this warm fuzzy feeling. Quite bizarre now.
What I fail to mention is that due to my decline whilst on steroids and my repeated negative blood tests, the diagnosis of MG had been taken away. (MG Myasthenia Gravis). I had been seen at Oxford by a Dr who decided I didn’t have MG but was suffering from stress and ME. It was decided that the steroids should be tapered down and stopped. If more symptoms appeared I was to be referred back.
As soon as the steroids started to be tapered, I had more symptoms. Double vision, bilateral ptosis (so both eyes were closed I had to tape them open if I wanted to see), choking on my own saliva, choking on water or food. In January 2009 I was on less than 10mg of prednisolone and things were just getting worse.
I was wheeled straight into resus. My blood gases (venous) were taken and showed exactly what they should for someone who is having a crisis, mine were borderline. However due to the “rarerity” of this illness the results were misinterpreted as a panic attack. I went from one minute being told that they would probably have to put me into a drug induced coma (nice) and take over my breathing, to being told I was having a panic attack, due to the letter from Oxford being in my notes. From then on in I was treated with utter disdain by the medical staff.
Unfortunately 2009 was peppered with hospitalisations. I lost count I think it was about 6. The only time I was treated with any respect was in August 2009 when I had a kidney infection and was on a surgical ward.
In June 2009 I was in as I couldn’t open my mouth and was very weak. I had a nasal gastric tube fitted, which actually wasn’t that bad. However I truly believe that there was something written in my notes about me having munchausen. Ive asked for a copy of my notes but under UK law they can withold basically anything they like under the guise of protecting you. In my notes the doctors constantly make sweeping statements that are not related to my medical issues, make derogatory comments about my mother and my husband. They also cannot tell their left from their right. Which isn’t that reassuring. I have ptosis and facial weakness on my right side of my face. This was constantly referred to as left side weakness!
Anyway the protocol for a hospitalisation now is Im either unconscious or dead. I wont go in otherwise due to the treatment I recieved on B ward.
In May 2009 my breathing problems were investigated. I had to wear a pulse oximeter for around 17 hours. This continously showed dips in my levels of oxygination on exertion. Now by exertion I mean just walking around or talking on the phone. I dont mean doing a five mile hike. Unfortunately the Dr that carried out this investigation is an expert in COPD not neuro muscular disorders. His opinion was that I hold my breath when moving around. Now thats certainly possible. However I had to fill in a chart detailing my activity throughout the day when I was wearing the pulse ox. One of the activities where my o2 levels dropped when when I was talking on the phone. You can’t hold your breath whilst talking. Its just not possible.
Some how my husband and I (and mum) managed to convince my hospital consultant (neuro) that these breathing episodes (where I struggle to breathe) were real and I now have an oxygen concentrator and oxygen cylinder at home. This has helped a little.
So whats happening now?
Well the disease has progessed to the point where I struggle with everything. I tend to only leave the house for medical appointments or hospitalisation.
In December 2009 I went back to the Oxford clinic and was seen by a different Dr. I had explored the possibility of going to a clinic just outside Paris, the Parisian Dr had suggested this Dr at Oxford, so I bit the bullet and went back. Thankfully this Dr hasn’t ruled out the possibility of whats known as Seronegative MG which is what I have said it is all along. Ive had bloods taken for a new more sensitive test that has been developed by Angela Vincent and her colleagues at John Radcliffe hospital in Oxford. This new Dr has said even if this test comes back negative it doesn’t rule out the condition. The only thing that would is a plasma exchange. If I respond to PLEX its proof positive that I have MG. There are no other conditions being talked about.
I emailed my local neuro last week to update him on how badly I was doing. I haven’t seen him since August 2009. Since then I have developed an allergy to penicillin and I also had a typical MG response to an antibiotic called Clarithromycin. The clarithromycin made my weakness much worse and even the mestinon I take every 4 hours could not improve it.
My neuro thanked me for my update, but refuses to do anything until the test results are back. I asked him what his position was on PLEX and he replied that if the Oxford Dr wants to do this he will have to arrange it to take place in his hospital. I still have no idea when I will see my local neuro again. Basically my local neuro who we will call Dr X has told me to fuck off and hes not interested. I have lost all faith in him. How can I trust Dr X, when in the copy of the notes I requested there are no comments there from him. How can I have faith in a man who will do nothing whilst his patient slowly deteriorates? My mum asked me how does he sleep at night? I answered with one eye open I hope as you can sure as hell know Im not the only person he has treated like this.
I understand Drs swear the oath “first do no harm”. But the longer he leaves me the more neuro muscular junctions I lose. I face the fear that my body will no longer be able to replace those nmj’s. The more damage this disease causes to my body and the less and less likely that it is that I will ever achieve remission. I get so fed up with the constant battle I face with the medical profession. It is a lonely place to be.
My GP isn’t much better, we will call him Dr Y. Dr Y and Dr X worked together and Dr Y obviously trusts Dr X never to make any mistakes in patient care. Dr Y wont do anything without consulting Dr X. Dr Y told me in September that he is 100% sure I dont have MG. That would be fine if he had done some basic research on the condition, the tests, the flaws in the tests and the studies published in Medical journals the world over. I have spent the time researching all of these and know that it is perfectly possible to have MG and be negative on the tests, the data proves it. Unfortunately Dr Y and Dr X despite being given the information by me (and paid for by me) chose to ignore it. Dr Y is actually a reasonable Dr, if I ring him regarding any other conditions he is fine and trusts my judgement. He just hides behind the title GP and says hes not a neurologist. He has to be led by Dr X, but what if Dr X is wrong? Because he isn’t an expert in the field of MG.
I have to email Dr Y shortly as I want a referral to a London hospital to see a pulmanologist that specialises in neuro muscular disorders. She wants to conduct a sleep study and look at the amount of CO2 Im retaining. The symptoms I am having are to do with CO2 not oxygen. Which is what I can’t get X and Y to understand.
I hope Y will refer me. The battle continues