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.