My name is Alex and I was diagnosed with Miller Fisher disease in the neurological ward of a Hospital on the 14th of May 2013. I will try as hard as I can to replicate all aspects of my experience of this disease so that it can help others.
I have been fortunate enough to have a very healthy life with no medical issues except the occasional cold. I try to eat sensibly and stopped smoking about 10 years ago. I had never been admitted to hospital before.
On Tuesday 7th of May 2013 when I got home at around 8, when I came home my other half notice that my right eyelid was drooping a lot over my eye and was concerned. At that time I was feeling fine and thought it might be an insect bite or caused by some irritation. Next morning Wednesday, as the eyelid drooping had not gone away, I made an appointment to see the local GP. I walked to the clinic from Office and he called it Ptosis, said it was likely due to an infection that might pass away, advised to keep an eye ( no pun ) and sent my to the local hospital for some blood tests. He listened to my chest as I had told him I thought I had a chest Infection from a cold two weeks before and he said that that appeared clear. I walked back towards my Office and took a cab to the local hospital for the blood tests.
By Wednesday 8th May - night, I had issues with my inner mouth muscles and had started slurring my speech. My face had become asymmetrical, with my right side weaker and drooping but my left eyelid had started drooping as well. I remember trying to eat dinner for over half an hour and just giving up leaving a half eaten plate. My other half was alarmed and we did severel stroke tests, but I passed them all so we decided to go to the Doctor again. This time she would pick me up from the Office and drive me there.
Thursday 9th May - at the GPs was a different doctor who agreed that the systoms were alarming and examined me for stroke and pronounced that because of issues on both sides of my face it was unlikely. Nevertheless she referred my to the local hospital for a chest X-ray, further blood tests and to the TIA (Transient ischaemic attack) unit. TIA is like a mini stroke. This was just to be on the safe side. I did the X-ray and the bloods, but heard nothing about the TIA referral so came home Thursday night with steadily worsening symptoms, but still thinking it was a nasty infection of some sort.
Friday 10th May - morning I still went to work though I was slurring my speech quite badly and had very poor eyesight. I’m a very stubborn person and have not missed days at work due to illness for years.
My colleagues were beginning to get slightly concerned, but were putting on a brave face and I even had a meeting with a client who expressed concern at my symptoms. Mid Friday afternoon we got a call from the GP’s Office to come by there and collect a letter to go to the TIA unit of a large hospital about 25 minutes drive away. My other half picked me up and off we went.
When we arrived early Friday evening, and went to the TIA unit they said they saw patients by appointment only and advised us to go to the A&E Unit, where we would get assessed and then maybe a Doctor from TIA could go down there. At A&E, the assessors determined that I was an acute risk , because of the difficulty swallowing and some difficulty breathing. A cannula (needle into vein to draw blood and inject fluid) was inserted into my left arm and taped down and after an A&E Doctors assessment it was determined that I should be admitted into a ward for observation and diagnosis. I was given a brain CT scan, an electrocardiogram and a chest X-ray and then wheeled into a corner bed in a kind of holding observation ward attached to the A&E Unit where I was put on saline drip.
A series of Doctors and student Doctors came to see me on Friday night and Saturday Morning and repeated tests with my eye movements as well as reflexes and muscle strengths. They also took a huge amount of blood samples. Apparently my symptoms had similarity with a range of neurological conditions and as it was the weekend they were in communication with the in-house and consultant neurologists and monitoring my condition.
At this point, I was generally weak, my face looked lopsided with my right side visibly drooping and my right eye practically closed. My left eye was half closed and i had to move my head to see around as the eyeballs were moving very little. I had difficulty moving my tongue, acute difficulty chewing and swallowing and had a rubbery sensation in my hands almost like wearing rubber gloves. I was eating only soft food and that too very slowly and dribbling while drinking liquids.
By this time , during Saturday 11th May, the attending junior doctors and my other half (who has no medical training, but can use Google very effectively) had both independently come to the conclusion that I had a an autoimmune disease called Myasthenia Gravis based on my symptoms. This is an incurable disease, but can be treated so that a reasonably normal life can be lead. The symptoms certainly matched those on the NHS website for this disease and pending confirmation, I was put on a starter dose of pyridostigmine and I believe steroids as well.
I had acute headaches especially while lying flat at night and doctors prescribed Ibuprofen for that. They also got to check my breathing strength by blowing into a measuring tube every two hours to ensure that I wasn't a choking or other risk. I also noticed that my saliva had thickened so this added to my swallowing and speech slurring issues. On Saturday night the duty doctors announced they would be moved to a dedicated neurology ward the next morning.
Sunday 12th May -morning after breakfast I was moved in my bed to the neurology ward of the Hospital and neurologists there continued doing reflex eye co-ordination and muscle strength tests. They also said that they would do another CT scan as well as Electrical Measurement tests of nerve signals.
The symptoms remained about the same even after medication.
On Monday 13th May - Morning I had a visit from another neurologist who did similar tests re eye coordination, reflexes as well as muscle strengths and further seemed to confirm the diagnosis of Myasthenia Gravis, although he said that there remained some unexplained anomalies that needed confirmation. The treatment continued though.
I also had a visit from the speech and swallow therapist who did an assessment and prescribed a series of face muscle exercises.
I also had Electrical Measurement tests of nerve signals done, some of those involved passing current through pads to make my muscles jump. I was told the results would be sent to the consultant neurologist.
Nothing further happened on Monday and the symptoms remained the same or slightly worse.
On Tuesday 14th May - morning, I had a visit from the senior consultant neurologist who after doing some reflex tests and conducting an examination, announced that I most probably do not have myasthenia gravis but something called Miller Fisher syndrome which funnily enough is the bodies reaction to a virus and actually just goes away. He said that the symptoms are likely to get a bit worse before it gets better but I was confident that he was one of the experienced neurosurgeons in London and even more so when his teaching professor came to visit and took me to use as a patient for a lecture ! I was now confident they have got the diagnosis right because he explained all the symptoms. I had another lecture at 2 that afternoon ! They stopped the current Myasthenia Gravis medication and in advised that they would do a Lumbar Puncture and an MRI to confirm. He said I was fit to go home imminently and return as a day patient if any other tests or treatments are required.
The consultant and professor both explained that Miller Fisher if left untreated would fix itself over 4-6 months, but with treatment would get fixed in 4-6 Weeks. The symptoms would usually go away in the reverse order they manifested.
However, the professor seemed to think I should be treated hospital before I left in one go with IVIG Immunoglobulin treatment administered over 5 days with 3 bottles a day.
Thursday 16th May - I had the brain and neck MRI done with and without dyes , because of the difficulty swallowing and with my head strapped down, it was a challenge to not choke. That afternoon I had a lumbar puncture where they took a sample of spinal fluid to ensure that there were no nasties and to confirm the diagnosis of Miller Fisher.
That evening they told me that the MRI was clean and that the lumbar puncture had confirmed the presence of protein indicative of Miller Fisher and not Myasthenia Gravis.
Friday 17th May - After breakfast they started the IVIG treatment intravenously via a new cannula. They had removed the earlier one, so they had to get a doctor to insert another one into a vein in my left arm. the three bottles went in that day without incident at about 5-6 hours for all 3 bottles.
Saturday 18th May - The nurse noticed that the cannula had slipped out during the night and a doctor had to called to put in a new one. After lunch they started the IVIG treatment intravenously via the new cannula, they had to get a doctor to insert another one into a vein in my right arm.
I had had blood taken for so many samples that I was used to the sharp pricks in the several attempts to get the needle in into a vein and taped in.
The third bottle of that days treatment did not complete properly because the needle of the cannula slipped and what was known as “tissuing” occurred. This meant that the IVIG fluid went into the skin tissue instead of the vein and basically caused my upper arm to swell to twice its size. It was past midnight when i noticed this and a doctor was called to reinsert a new cannula into a small vein in the hand. This tissued again after about an hour, but the IVIG was pretty much done by then.
The next day Sunday 19th May - a doctor who was an expert at inserting cannulas was called in before treatment and she after a few tries inserted one into my other hand and that remained intact for the rest of the days of treatment.
Tuesday 21st May - Last day of the treatment and a further final blood test was taken to check for presence of abnormalities. I was discharged that evening to go home !
I could feel the symptoms going away literally daily. I was getting stronger and the speech slur and swallow improved rapidly .
The eyes took longer and till the early part of June I still had issues with opening my right eye and though I walked the five minutes to work and back and spent 3-6 hours a day at work, I could not see confidently and so had to be careful crossing roads and such.
Friday 21st June - Friday 28th June - My other half and I went to Madeira and spent a pretty normal and quite hectic holiday there. I had no restrictions on food and drink and did a lot of walking daily without issues.
Sunday 30th June- I feel I’m 97 % or so back. The main symptom remaining is some double vision. I also have a slight droop in my right lip which only I can notice.