I had a letter today from Oxford and I’m struggling to work out if its good or bad news.
My bloods have come back negative, but the Dr only mentions the standard ACHR and MuSK test which I have had done previously and been negative on. They were supposed to be using a more sensitive assay that had been recently developed. So either its been done and is negative or hasn’t been done and theres been a mess up in the lab. What is for sure is that I am actually no further on than I was in December 2009 or at any point since October 2008.
The other news is that they want me to stay at Oxford as an inpatient. They would like to re do the Tensilon Test and the Ice pack test. Both of which I have previously responded to. The dr wants to carry these out before doing what he classed a more invasive procedure like PLEX (Plasma Exchange). They also want me to see a neuro-opthamologist again, the same people I saw in October 2008.
I am suspicious and cautious purely because of the way I have been treated previously when I have been an inpatient.
The other news is that Dr Y has sent me a copy of the letter he sent Oxford. This has made me quite angry as it basically says she’s asking for referrals all over the place and is there any point?
To put the facts straight, I was sent to Oxford by Dr X in October 2008. I didn’t ask for the referral my consultant did. I asked to be referred to London queens square, but declined the referral when Oxford said that they would see me again. I was referred after I asked to see a pulmanologist locally, that referral proved I had de-saturation of oxygen. I then asked to be referred back to Oxford, as Oxford had asked me to be if my condition declined, which everyone had agreed it had. So I am not Dr shopping as Dr Y’s letter infers. I am doing what they should be doing which is to try and find out what is wrong with me. Its not difficult the clues are there. Im stable on steroids and I respond to mestinon.
I just struggle to see why this is so hard to diagnose.
People with MG can suffer what is know in medical circles as a “Crisis”. This is in a very basic level of explanation a term to describe a life threatening inability to breathe. In the most serious cases patients can end up having to be mechanically ventilated. A crisis usually occurs with poorly managed MG, the patient having an infection, stress or heat or it could be caused by some unknown factor.
The problem that MG patients have is that most neurologists have very little understanding of respiratory issues. If you are very lucky as an MG patient you maybe referred to a Pulmanologist. However if the pulmanologist has no understanding of how neuro muscular diseases affect the respiratory system, you can be in trouble!
I was referred to an excellent pulmanologist but his / her speciality was COPD, not neuro muscular disorders. When I was investigated for breathing problems which were backed up by the pulse oximeter that I wore the Pulmanologist had no explanation for why this was happening. The only conclusion he could reach was that I was holding my breath. Luckily my Neurologist and GP were concerned enough to provide me with Oxygen at home to support me when I was having problems. But this is as far as it has got. No further investigations have taken place and no one knows why my oxygen saturation plummets. Or why I can feel very short of breath and it doesn’t show on a pulse ox.
With MG relying on a pulse ox can be dangerous. Patients having breathing difficulties can become extremely ill extremely quickly. This can all happen without any drop in oxygen saturation being recorded on a pulse ox. Oxygen saturation can be the last thing to drop as the issue is not with Oxygen but the amount of carbon dioxide that is remaining in the blood. The most reliable way for an MG patient to be analysed is to conduct an Arterial Blood Gas test. However these can be interpretted incorrectly and patients told that they are suffering from panic attacks, when infact they are struggling for breath.
This happened to me in January 2009. I had been struggling to breathe for most of the morning. By 1pm I could barely talk, my chest felt like it was being crushed and I had a real sense of panic. When the ambulance arrived my oxygen saturation was 92%. My venous blood gasses were showing I had a problem. But due to the fact I had no confirmed diagnosis of MG the neurologist on cal told the resus team to ignore all the information they had infront of them as he believed I was suffering from a panic attack. Thankfully my condition improved, but the outcome could have been very different.
Unfortunately in MG there is very little understanding on how or why the respiratory system is involved. For Neurologists on the whole the situation is seen as black and white. The way they see things is that you either have no breathing problems or you are in crisis, there are no shades of grey.
I have now spent a couple of years poking around on different MG forums and the consensous is that quite a few MG patients have issues with their breathing that are not being addressed by their neurologists. The people I have come into contact with around the globe all say the same thing – that their neurologists view the situation as in as long as you aren’t in crisis then your breathing is fine.
The concern for me is this simply isn’t the case and no one is addressing the issue or possibly even researching it. Surely if enough MG patients are reporting these symptoms to their neurologists this should be investigated. Unfortunately neurology seems to operate in a bubble, where there is only black and white and shades of grey do not exist.
Had a really lovely day today, had a visit from E today. Managed to catch up on all the gossip and just generally chat. I ended up on oxygen though as I suddenly couldn’t breathe and my face started going south! E’s used to it now so she just asked if I was tired. I was tired but as I explained to her if I get in a bad way when I’m having fun I dont care! Its when I wake up crappy I get really annoyed.
We taught E how to play poker today! I have the feeling she could get quite mercenary if there was money involved! We just need to convert S now and we could have litte poker tournaments! It was hard going for me as I kept losing the plot and not remembering which cards I had and what cards were winning hands. Really good fun though, even with the oxygen concentrator chugging away in the background!
I emailed Oxford today to ask if the blood tests had come back as its 6 weeks now. Hopefully I will get a response soon. The physio department at the local hospital contacted me today for the stress test as Ive had to put it off again. The physio was really lovely and very switched on. Couldn’t understand why I was being given oxygen at home but had no respiratory consultant and that no investigations were taking place. She couldn’t understand why the GP thought there would be an issue with the PCT. She is going to contact the Respiratory Consultants secretary and ask if he will refer me to London or at least write to my GP to see if he can push things along. So at last something maybe happening.
Talking to the physio today restored my faith in the people that work in the NHS. That there are people that actually care and will do their best for a patient.
What a lovely day ……
It will be 6 weeks on Wednesday since I had my blood drawn for tests and Im still non the wiser as to if anything has shown up in them. MG seems to be the disease that is all about waiting. Blood tests take an age, neurologists adopt a wait and see approach, its all just waiting, waiting, waiting. Never any doing!
Im also waiting to hear whether or not my request to be seen by a specialist in London will be allowed. I have no idea how long it takes to get the Primary Care Trusts approval or for my GP to contact the Oxford Dr. Again more waiting in limbo land and still no effective treatment.
On a positive note I saw my 18 week old Nephew on Saturday. I haven’t seen him since he was 4 weeks old and hes huge now! I held him and played with him for around an hour. I have been struggling to use my arms ever since. It shocks me at how weak I have become that I struggle to hold a baby. I dont mind my arms being weak, it was a good use of energy and happy to pay the price. I get more upset when I have wasted energy on something that doesn’t bring rewards or if I wake up weak and feeble. That feels dreadfully unfair.
Ive made many friends through the internet via forums for which I am truly thankful for.
Through reading all the various threads on different forums it has become quite clear to me that the battle to get a diagnosis of Myasthenia Gravis is common throughout the world, regardless of the standard of medical care provided in the patients country.
Someone once posted on a forum that the average length of time it took a female to get a diagnosis of MG was 7-8 years! This diagnosis usually came after many visits to many “specialists” and usually involved some aspect of metal health involvement. As far too often patients are told that the illness “is all in their heads”. On the other hand the length of time it took male patients was 12 -24 months. So why are the men being taken more seriously than the other 51% of the worlds population? Have we really moved no further on than the 19th Century in our beliefs that a womans uterus is what is causing her “hysteria”?
Some of the personal stories on the forums make you want to weep. One patient has tested positive for ACHR and is still being told that they do not have MG. Other patients have reached the point of mechanical ventilation before the diagnosis is confirmed, despite telling their Dr’s, for years in some cases, that they are having problems breathing, swallowing or even moving. Others have been discharged from hospital unable to feed themselves or walk and have been told they are suffering from coversion disorder.I met another MG patient in person it had taken them several years to be diagnosed. They were initially diagnosed with anorexia as they had become dangerously thin. At no point did anyone examine why this patient couldn’t eat or swallow properly. It was far easier to write them off as suffering from anorexia, which meant in effect if they didn’t improve it was down to them, not that the Dr’s had misdiagnosed them. Some have been sectioned under the mental health act. This is a criminal way to treat people who are seriously ill. Yet it goes on unreported and ignored. These cases are from developed countries not the developing world. Yet we seem to be unable or unwilling to do anything about this.
Unfortunately it is women who are usually told that it is all in their head. What is more frightening is that the people that are telling them this do not have qualifications in the field of mental health, it is neurologists that are saying this. A lot of times when these patients see experts in mental health they are told that there is nothing mentally wrong with them.
When I was in hospital last year I met a woman who was in her 80’s and had just been diagnosed with MG. This woman was an extremely strong woman. She had lost two husbands one to cancer and her second husband who had MS she had nursed for 25 years. She was very old school and she believed and trusted in everything that her GP told her. She had been his patient for many years. Six years ago, she developed problems swallowing, smiling and could no longer whistle. Her GP told her that he believed she had suffered a small stroke. There were no further investigations done to prove that the diagnosis was correct it was accepted due to her age that this was the case. When she continued to deteriorate, which was very slowly it was again suggested that she had suffered another small stroke. By this point she could not eat solid foods and her voice was always slurred. Again no investigations took place. It took 6 years for her to deteriorate and collapse. When I met her she had been fed via a nasal gastric tube for around a month and had just recieved her diagnosis. She had been started on steroids and mestinon and was improving every day. She told me she felt as good as she did when she was in her thirties. By the end of her stay she was driving me nuts with her constant whistling! She whistled all the time as for 6 years she had been unable to.
I understand that the medical profession say that this is rare but rare doesn’t mean it doesn’t exist. Rare just means it doesn’t happen that often but it still happens. My concern is that MG isn’t actually as rare as the medical profession make it out to be. I think that there are many other people out there like me who are battling to get the correct diagnosis. Until we are officially diagnosed we do not end up in the statistics. Or how about the people that are never diagnosed and/ or are given an incorrect diagnosis? How many people out there are falling into this category?
My concern is its takes far too long for patients to be diagnosed or for this disease to even be considered. My mother used to just sit and type all my symptoms into a search engine and repeatedly it would come back with Myasthenia Gravis. If my mum who has no medical training can do this why can’t the Dr’s?
I had an email today from Dr Y regarding my referral to London to the pulmanologist. Apparently he needs to liase with Oxford and take advice from the PCT. So I am no further on at present. Find it quite amusing that he is no longer consulting Dr X regarding my treatment.
Had a letter from the local hospitals physio department today as well. In October 2009 I was supposed to go for an assessment with the physio but I was too sick at that point to be put on a treadmill. They want me to go on the 2nd Feb, but again I am not well enough to go on a treadmill. Im barely managing to get around my house and they will certainly not be looking after me at home after they nearly kill me on that thing. Im not going to ring, but I shall write to them instead to try and get them to understand how bad things are at the moment. What I actually need right now is a proper assessment done by a Dr not a physio.
My arms are shaking now just trying to type. Im actually feeling ok, but as the morning goes on I am starting to feel weaker. However I am due another mestinon right about now. Just waiting for my pill alarm to go off. I have to have an alarm as I forget to take the stuff, even though I know I get progressively weaker. I also have the problem that 10 mins after I have taken it I can forget if I did take it. You dont want to overdose on this stuff!
Today has not been a good day.
I woke up and came down stairs, within ten minutes I had bilateral ptosis (both eye lids drooping so that they are shut.) I took mestinon and within 30mins it had resolved. I was still feeling pretty weak so I just sat around on the sofa.
My vision has been a bit wonky today resulting in several things being knocked over. Its so frustrating. I know “normal” people knock things over but they dont do this on a daily basis and over and over again.
At 1230pm hubs and I were having some lunch and my eyes started to jerk around in my head. We were watching “america’s next top model”, we love it and have followed every season so far. Its cycle 13 here. I didn’t last through the programme, first the right eye shut and then the left one started to join in. Combined with the nystagmus there was nothing else left to do but go to bed. I had only taken a mestinon just over an hour before hand but at the moment its not lasting very long. I took another mestinon when I got upstairs and crawled into bed.
I hate being in bed my immediate reaction is to fight against it. I start thinking about moving my bed. Physically impossible for me but the idea plays on my mind. Once an idea is there its very difficult for me to shake off. Theres washing to be done and has hubs changed the load over? This starts to gnaw away at me. I try and block those thoughts out. Luckily the radio catches my attention its a Sherlock Holmes story “the crooked man”. I haven’t heard it before and soon the scenes are playing out in my mind as the words are being spoken.
The next thing I know its 1445 Ive been asleep for an hour and I feel rested. Both eyes will open.
I just wonder how long I have to be in this state before someone will start treating me. The post has been and gone and there is still no news on my blood test results. Its been 5 weeks tomorrow.