Happy old and new year!

Another year is just a few hours away from becoming a memory. Looking back I can say that it was an important year for my myasthenia. I had my thymectomy in January and my condition has been stable throughout the whole year (I don’t think I’ve ever been so grateful for my good health!). My eye patches and prisms glasses are gathering dust and coming across them every now and then I just can’t believe that I was wearing them not so long ago. I had my second diagnosis ‘anniversary’ in November and am feeling more positive that the symptoms will stay ocular. Will I be one of the 10-15% of patients whose disease remains exclusively ocular for the rest of life? That is what I was hoping for a couple of years ago! The risk of generalization is highest in the first year after onset. Approximately 85% of patients have generalized disease within that time frame. Reading through medical studies I have found out that the risk of generalization is significantly reduced after two years. This gives me big hopes that my ocular myasthenia will not progress into anything nastier from now on.

I continue to take Mestinon (Pyridostigmine) which is the only medication I have been taking since onset. I don’t know if it makes any difference at this stage and the doctors cannot say what the consequences would be if I decide to discontinue the treatment. So far I have managed to reduce it from 180mg just after the surgery to 30mg daily. I have not been bothered by any muscular twitches since which was definitely a side-effect of the medication. However I am reluctant to go off medication completely due to the fears that if something goes wrong I will blame myself for not keeping things under control. Who knows, maybe the medication is one factor that has contributed to the stabilization of my disease. I am sure that the thymectomy has also played a major role. The proof is that my anti–acetylcholine receptor (AChR) antibody test has recently shown a drop from 25 (levels at onset) to 13 (while normal levels are below 5!). This has been reflected by the absence of double vision episodes which have been quite severe during my first year with MG.

In terms of treatment, I still see my neurologist every six months for routine checks but I have just been discharged from the Orthoptics department as they consider that my vision has been normal for the past six months. As the appointment was just yesterday it gave me a good feeling towards the end of the year which I wanted to share with you now during the festive season (yet another reason to celebrate!).

I wish you all a happy New Year with best health and positive thinking!

  

Under recovery

Days after the thymectomy just over three months ago I was screaming in pain so excruciating that I almost lost my hope that life will ever get back on its normal track. It has been an uneventful period of time from a medical point of view since my discharge from Oxford. Local follow-ups have been arranged with neurologists but unfortunately I haven’t been seen by anyone up to date. My appointment with a neurologist in April has been rescheduled in December which certainly beats my records for waiting times with the NHS (eight months waiting for an appointment which has been cancelled from their end seems far too much and a follow-up almost one year after the surgery is not at all what I expected as a patient - and a patient person). This was so disappointing but I am still trying to chase this up and arrange an earlier appointment if possible. If not then I will certainly look into seeking for a second opinion with a private neurologist. I was expecting to have some tests repeated e.g. the blood test for acetylcholine just to check if the surgery has made a difference or the improvements I feel are only a placebo effect of the surgery which I put all my hopes in.

My post-surgery histological report was very brief and mentioned ‘very occasional lymphoid follicles with germinal centres but this is not a prominent feature. There is no evidence of neoplasia’ – which I took as a good news despite not having this information properly ‘translated’ by a doctor. Dr. Google has helped me once more to make sense of the medical terms but still I don’t want to make an habit out of consulting the Internet rather than a doctor (doctor who?!).

All in all, I am very pleased with how things have progressed since the surgery. The pain subsided completely a couple of weeks after the operation but has started again around the main incision six weeks after that most likely because of my negligence... You never give your 12-stone partner a piggy-back while you are still under recovery! Probably it is too early to say whether it has been a successful intervention or not after only three months but I am certainly feeling better compared to the times when everything seemed to be a bit of a struggle. My scars have been healing nicely and they are hardly noticeable now. In terms of double vision, I experience this only very rarely – for instance when I doze on the bus and wake up minutes after that but definitely not after a good night sleep which was the case before. Unfortunately I am still feeling dizzy sometimes which I am not sure if is caused by the problems with my eyes or whether the issues are of a different nature (my diagnostic creativity or just to put it in plain words - health anxiety has been developing steadily over the past year!).

Following some experimentations with the medication as recommended by a neurologist in Oxford, I have reduced the Mestinon dose to 60mg or even 30mg a day (at least three times less than the maximum dose I had prior to the surgery - 180mg). I don’t feel any difference in myself except less side effects - mainly decreased muscle twitches or spasms which are almost gone now. I am unsure whether my high energy levels recently are due to this change of medication, the effects of the surgery or just divine providence. With all this energy going on, I am finally back to the gym more determined than ever after a painful (literally and figuratively) couple of months break. I have already noticed some progress in strength which is extremely promising for someone anxious that the general muscle weakness can install anytime now (this is normally the route for approximately 90% of people with MG!). My hopes are that the chances for MG to generalize are significantly decreased after the first year of illness but the risk is still there. I think that the exercise (which now consists of mainly lifting weights which target the main muscle groups – arms, legs, back, chest, shoulders etc.) played and continues to play a major role in my recovery and MG management (at least as much as the love and care from my partner and family plays on a psychological level and prayers on a spiritual one). One day I plan to write a more detailed entry concerning the exercise and the diet just in case this information could be of any help for people with similar symptoms.

Until then all I can say is that I am grateful for where I am symptom-wise at this stage and am fully enjoying my life – personal and professional. Two weeks after the surgery I have returned to work on a phased schedule and despite dealing with a series of crises at my workplace I think that I am coping much better than I expected. I am continuously learning how to better deal with stress which definitely does not do this illness or any other physical or mental illness any favours. Although I am working with vulnerable people (or probably because of that?) I am also learning how to better protect myself and look after myself with all the kindness and compassion I can always offer to others.

Time for thymectomy

I stepped into the operating theatre less anxious than I expected. The thought that the thymectomy might be my chance to get better has helped me overcome all the fears related to what could go wrong during the surgery. Risks like infections, internal bleeding, conversion to sternotomy, phrenic nerve injury, or even death were all listed prior to the surgery (well defined but in reality with very low chances – 1%).  

My surgery was scheduled at 7.30am last Tuesday at the John Radcliffe Hospital in Oxford. Unfortunately I had to wait until 11am due to an emergency the surgeon had that morning (at least this time my surgery has not been cancelled again!). The waiting was so tiring that I was all numb and resigned by the time I was taken to the operating theatre. I just wanted to have this out of my way no matter what. Six hours later my thymus and I have happily parted full of hopes and pain. Although the procedure was VATS thymectomy which is less invasive than the transsternal surgery, the levels of pain shortly after the general anaesthesia have been excruciating. I have spent the whole night on morphine and oxygen as I was not able to breathe properly. Deep breaths would have caused a great deal of pain just below my chest. Turning from one side to another in bed also has been a challenge due to the incisions. There were six such incisions – three on each side of my chest as pictured. Five of them are only 1-1.5cm and the big one has 3-4 cm. This is where my thymus was extracted through and it was the most painful area for at least 48 hours after the surgery. After that other small pains and aches developed with varied levels of intensity (chest, ribs, etc.)

It has been exactly a week since I have been discharged. I have spent two nights in the hospital and during the third day I was on my feet ready to go home. Not without problems though the most significant one being extreme shortness of breath. Walking 50m made me breathe like I ran 10 minutes on the treadmill with a high incline. Not to mention climbing the stairs which continues to be a challenge as I live on the second floor with a generous number of stairs. The distance I am able to walk now has increased day by day and the pain which stopped me from sleeping at night has decreased significantly and is now manageable without any painkillers (Paracetamol and Ibuprofen were initially prescribed by the doctors for this purpose).

I am not sure whether this is only a psychological effect, but one of the first sensations I felt after the surgery was a ‘lightness’ of my eyes. They did not feel so heavy and difficult to focus when looking around. The double vision is still present in my lateral gaze and I don’t expect this to change soon. I was told that improvements could take weeks, months, or years to show (if ever). The chances to get better are 50-60% (how I love numbers!). Again not sure if this is related to the surgery but immediately after the procedure I didn’t feel any major random twitches in my muscles like I did before. I was told that the medication (Mestinon/Pyridostigmine 60mg three times a day) might have caused that and my neurologist encouraged me to experiment more by adjusting the dosage or time intervals between administrations. I am currently on 30mg three times a day as I decided to half the dosage and see how it impacts on my myasthenia. So far I can’t say that I’ve noticed any difference which makes me reflect again on whether this medication has any real benefits. I hope that the levels of anti-bodies presumably secreted by the thymus would decrease in time so they won’t attack my muscle receptors anymore which is the main issue with ocular and generalized myasthenia.

Now that I have made a short story so long I might add some more paragraphs! I have been off work for a couple of weeks and I’m far from being recovered completely. I have been advised to return to work in stages and contact the Occupational Therapy at my workplace. Monday is going to be my first day at work and I am feeling quite apprehensive as I still struggle to walk to work (which is only 15 minutes away). Also I get very short of breath when talking which is the main nature of my job (not to mention about walking and talking at the same time!). On the other hand I can’t wait to leave the house and gradually rebuild my old routine. The gym is the activity I miss the most but I am not allowed to do any exercise of lift any weights for another six weeks. 

Finally, time to thank... Thousand thanks go to... my partner who was so wonderful and supportive (he has even forgiven me for pretending not to recognize him while I was in intensive care – bad joke, I know!). My friends and family have had so many kind words for me and helped my morale a lot during this experience. Dionisios Stavroulias who was my surgeon has done a great job without any complications and a ‘Thank You’ card is on its way. I don’t have words to express how grateful I am for all the efforts he and his team have made. I have also been looked after by the Myasthenia Clinic in Oxford (sister Mary and Dr. Hilton-Jones) who reassured me all the time and followed up my progress and recuperation thoroughly. 

This is how the beginning of my New Year looks like which I hope is going to be healthy and wealthy, happy and full of nice surprises. For me and for you all...

One year with myasthenia...

We all have our good and bad anniversaries. For me the 4th of November is a day that brings both good and bad memories. Two years ago I have met my partner who is such a great person to be with that I can’t imagine life without. We’ve been through a lot together already and probably my Myasthenia remains one of the most important tests we had so far. Ironically the day when I could not ignore the ocular symptoms (diplopia) anymore falls exactly one year ago when we were celebrating our first year together. Even the cold I’m struggling with right now reminds me of that time as I was fighting a bug just before the onset of my MG.

It has been a nightmare since and looking back I still can’t believe that it’s been an year already. Today things are better, thanks God. My symptoms are mostly ocular at this stage especially on my lateral gaze which means that I still see double on my peripheral vision. Basically it’s like looking through a box and having a limited visual field. Beyond that limit my vision gets double or blurry (or both). My frontal vision has improved somewhat since one year ago. I’m not sure what helped to be honest. It could be the medication (Mestinon 60mg) which I have been taken religiously (except a small decrease of dosage for a couple of months). I guess that my lifestyle also contributed to staying healthy as much as possible. Or maybe it is just my body adjusting better than I expected to the new circumstances.

From eye patch to prisms, from ‘this can’t happen to me’ to ‘I’m strong enough and am going to beat the MG’, it has been an experience for me. I’m not going to dramatize things here and transform myself into a victim of an illness which affects a number of people much more seriously than me (people I had the chance to meet via the Internet through support groups and forums). Although my symptoms are ocular, on paper there is evidence that my MG has started to generalize. However I don’t feel too much different compared to four months ago when the EMG and blood tests have been last performed. So I’m still among 50% of the people with MG who have only ocular problems during their first year of illness. According to statistics the rest of 50% develop more generalized muscle weakness in the first year.

Generalized or not, it’s been an experience I’ve learnt a lot from. Firstly, I have learnt that I’m a strong person despite the inevitable ‘downs’ which were more frequent when the symptoms started. I had symptoms of depression the years before and I can tell that ironically my frame of mind has considerably improved since I made acquaintance with this illness. Probably just because there is a balance between the mental and the physical health and now I have a lot to compensate on a mental level while dealing with myasthenia.

This illness has taught me to step out of my comfort zone where the growth is (how cliché is that!). It made me reflect more on happiness – as a choice, death – how inevitable it is, time – running out imperceptibly, and life – how short it is and how we take it for granted and forget to live it to the fullest so many times. I needed this traumatizing event which has stricken me like a lightening to realize that there is no time and space for drama in my life. There are so many positives things I have discovered by contrast, including a simple day when my vision is close to normal even if only when looking straight ahead. And I am so damn grateful for that! Life is like a short obstacle race which does not give you too much time to reflect and overanalyse every single step and sometimes all you have to do is to jump. That is the moment when you realise that you cannot do it without focusing on your strengths rather than weakness and keep a constant positive attitude. My confidence has increased dramatically over the past year and I find it easier to deal with stressors than before. An explanation could be the fact that I have learned to deal with such a major stressor that everything else seems quite manageable. I’m calmer, more focused on myself and more receptive to other people’s difficulties which for my job as a support worker is a blessing.

I was going to celebrate my first year with MG in style as my surgery was initially scheduled on the 4th of November but was cancelled shortly after my pre-op assessment as described in my previous post. The new date with my thymus is now on the 6th of January 2015 and somehow I look forward to seeing this gland out once and forever but to be honest I am more looking forward to the holidays in a month or so. Hopefully the pictures I’m going to share from the Caribbeans won’t be blurry or double!  

NHS. No Hard Shoulder

The date of the surgery has been arranged relatively quickly after a ten-minute chat with the surgeon in Oxford. It was frustrating to travel six hours that day for such a short appointment which could have been easily arranged over the telephone. I was relieved though that at least the surgery was arranged and I knew what the next step is going to be. 

Funnily enough the first date available which I accepted without any hesitation was the 4^th of November. I said funnily because it was my MG ‘anniversary’ as the ocular symptoms started exactly one year ago. I can’t forget that night when I went into a restaurant with my partner to celebrate another year we shared together (yet another anniversary, a happy one this time). Things started to get blurry and double especially on my lateral gaze. Shortly after that I started to experience frequent double vision episodes first thing in the morning. It was clear at that time that something went wrong and I needed another couple of months to find out what the reason was. Here we go, exactly one year after that I am scheduled for surgery which is my chosen treatment route… Researchers claim that having the thymectomy done within the first year from the onset reduces the chances of generalization significantly. These findings encouraged me to take action and address my MG sooner than later.

The pre-op assessment at the J.R. Oxford Hospitals followed shortly. On paper it looked very organized and the multidisciplinary approach gave me hopes that it was arranged in a professional manner. I was booked in to see a doctor, the surgeon, a pre-admission nurse, have my X-rays and ECG done, etc. In reality things turned out completely different. The X-ray department was on strike and all the following appointments have been delayed as they depended on that. The pre-admission nurse was stressed out as her colleagues were off sick and she was overwhelmed with all the patients that day. She gave me a full report of her duties and administrative issues which honestly I didn’t need and I consider that quite unprofessional. Eventually she has found some time to chat with me but I felt really rushed through the pre-admission procedure (especially that I haven't had any surgery before). Another nurse approached me in the waiting room and disclosed some personal details in front of other patients waiting there (no ‘No confidentiality’ signs around!). One doctor ignored some basic hygiene rules asking me to blow in a tube he’s been playing with with his bare hands during the appointment. My surgeon was not available on the day to see me before the surgery. Finally I was told that I don’t need to talk to an anaesthetist prior to the surgery because I am ‘young and in a good shape’ (that’s definitely not the reason I’ve been referred for surgery!).  Long delays and lack of professionalism which have changed my opinion about the NHS radically. To conclude, it was a long and horrible day of waiting about five hours (not to mention another eight hours travelling to Oxford and back) for less than half an hour of appointments all put together. It is not what I would call efficiency! At least I have made some progress with the Magic Mountain which ironically is a novel that explores the illness among other themes... 

Anyway I survived that day. Just to find out the day after that the surgery was cancelled and I’ve been rescheduled on a different day. Just like that. I have made some enquiries later on just to find out that they had to ‘move some patients around’?! I had to undo all the arrangements at work, with people who have taken time off work to be with me during these difficult times, travel arrangements and so on. Quite a bit of inconvenience and stress which has made me feel unwell. To be honest I have found more difficult to cope with all the stress than the condition itself at this stage.

The new date they offered me didn’t work so well as I had a holiday booked around that time and that was the last thing I wanted to cancel. I’ve been sooooo looking forward to that! I am perfectly aware that my health comes first but I decided to take the risk and travel before the surgery which has been finally arranged in January.

Final decision: thymectomy

Thankfully it’s been a relaxing summer despite the tension in the background while waiting for the results for the tests with the Myasthenia Clinic in Oxford earlier in July. I think there was a spark of denial in me as I was hoping that the blood test would eventually reveal a misdiagnosis (I sometimes still can't believe and accept what I am dealing with...). The blood test measuring the antibodies to the acetylcholine receptor (anti-AChR) which are present in a high proportion of patients with myasthenia gravis has been repeated. Not only that the test hasn't invalidated the diagnosis, but the levels of anti-bodies apparently rocketed to 28 compared to just above 5 in January shortly after the onset (to note that normal levels are considered below 5). I don’t have an explanation yet about what this increment means. All that I can think about is that my thymus is getting enlarged and is secreting more anti-bodies which risk to affect other muscles in high concentration. As well this may be just an obsession I have that something wrong is going on inside me and is out of my control. Unfortunately this kind of tests are not administered very often and I don’t have any scans scheduled in the near future to confirm or infirm my hypothesis.

Paradoxically I don’t feel that my condition has worsen so much over the summer leaving aside the thoughts about denial. On the contrary, I had some really good days when I managed to cope without prisms glasses until late hours of the night. Warm weather didn't seem to affect me despite the predictions from the doctors and other sufferers I've been in touch with on discussion boards and on-line support groups. There seems to be a pattern of good vision in the morning which gradually deteriorates in the afternoon (when muscles and especially ocular ones tend to weaken). The deterioration continues further in the evening to the point that the double vision sometimes can’t be controlled without prisms glasses. I continue to have doubts about the effect of the medication (Mestinon) which does not seem to help too much in the evening despite going back to 3 x 60mg daily.

The bad news is that the results for the other test (Electromyography - EMG) indicated that my muscles did not react normally to the electric impulses which suggests that my condition is in an early stage of generalization. I was afraid that this is going to happen sooner or later and now there is clear evidence supporting the worst scenario (not sure about 'the worst' but definitely is not a happy one). My current physical shape does not seem to match the findings though. I've been feeling well and religiously committed to a healthy life-style with a very balanced diet and regular exercise (five-six times a week). I haven’t noticed any weakness except the overall feeling of fatigue more pronounced in the afternoon (which is a drop in energy levels experienced by most of the people as far as I know). Now if this is related to a generalization of MG is difficult to say as it does not affect a particular group of muscles e.g. limbs. Random twitches of various intensities continue to be very annoying and for some reason usually gets worse after I take the medication (or shortly after the meal following the medication). It is a common side-effect of Mestinon and I wonder whether all the twitching biased the results of the EMG test in any way. I haven’t had the chance to speak to my neurologist about this since I received the results but I’ll definitely ask this question during my next appointment.

Following this change in my circumstances I am feeling more pressured than ever to take some action and make a final decision with regards to the next treatment avenue. As I am not a big fan of medication of any sorts it didn't take me too long to push my decision towards the surgery. I have recently spent a lot of time reading about different treatment options I have at the moment, mainly thymectomy and steroids. I've come across some interesting pieces of research that explore the role of thymectomy in people with ocular or generalized myasthenia. The results sound quite promising although there might be a risk that my reading was 'selective' in order to justify a decision I've almost made before actually the results for my tests came through. Anyway I’ll list below some of the more or less recent articles I found more relevant with a brief description of findings and a link to the source:

Schumm, F., Wiethölter, H., Fateh-Moghadam, A., Dichgans, J.

Thymectomy in myasthenia with pure ocularsymptoms

• The severity of ocular symptoms was rated using a score developed for this purpose. The score progressively declined after surgery to an average of 70% of its initial amount in 80% of patients. Full remission occurred in three cases. No patient developed generalized myasthenia. Antibody titres against acetylcholine receptors if elevated preoperatively also dropped following surgery, with one exception. Clear criteria for the expected therapeutic success of thymectomy could not be identified. Based on our results, and on the assumed significance of the thymus gland for pathogenesis, thymectomy should be considered in patients with pure ocular symptoms.

Roberts, P.F., Venuta, F., Rendina, E., De Giacomo, T., Coloni, G.F., Follette, D.M., Richman, D.P., Benfield, J.R.

Thymectomy in the treatment of ocularmyasthenia gravis

• Transsternal thymectomy (n = 55) and transcervical thymectomy (n = 6) resulted in cure in 31 (51%) patients, improvement in 12 (20%) patients, no change in 16 (26%) patients, and worsening of symptoms (including 1 postoperative death) in 2 patients. Patient outcomes were statistically independent of the duration of preoperative symptoms (mean 9.5 months), patient age, or the presence or absence of thymoma. In patients with ocular myasthenia, 70% were cured or improved after thymectomy; in the subgroup of patients with ocular myasthenia and thymoma, 67% were cured or improved. Thymectomy is an effective and safe treatment for patients with ocular myasthenia gravis.

Liu Z, Feng H, Yeung SC, Zheng Z, Liu W, Ma J, Zhong FT, Luo H, Cheng C.

Extended transsternal thymectomy for thetreatment of ocular myasthenia gravis

• None of the patients experienced a myasthenic crisis, progression to generalized myasthenia gravis, or mortality. Hyperplasia of the thymus was present in 106 of the 115 patients (92.2%). Among 110 patients on whom follow-up was done postoperatively, 29 (26.4%) were in SCR, 64 (58.2%) showed improvement, 7 (6.4%) remained unchanged, and 10 (9.1%) had a worsening of their conditions. The results of the review indicate that ETT is a safe and effective treatment for OMG, especially in patients with illness of shorter duration.

Geoffrey B. Blossom, MD; Raina M. Ernstoff, MD; Gregory A. Howells, MD; Phillip J. Bendick, PhD; John L. Glover 

Thymectomy for Myasthenia Gravis

• Improvement after thymectomy was noted in all 37 patients. Complete remission was achieved in three patients (8%) and pharmacologic remission in 23 (62%). The remainder improved in stage, medication requirement, or both.

Maggi G, Casadio C, Cavallo A, Cianci R, Molinatti M, Ruffini E.

Thymectomy in myasthenia gravis. Results of 662 cases operated upon in 15 years 

• The results of thymectomy in the treatment of myasthenia gravis (MG) arereviewed in the light of a personal series of 662 MG patients, operatedupon during the last 15 years. In 500 MG patients without thymoma, thefollowing results have been achieved: remission 37.9%, improvement 49.4%,unchanged or worse 7.4%, dead 5.2%. There is no sex prevalence and theremission rate is higher in patients under 40 years of age (P less than0.01), with mild disease (P less than 0.05), with a MG duration of lessthan 1 year (P less than 0.05) and with a follow-up length of between 5 and10 years (P less than 0.01). 

And the list goes on and on and on... 

To conclude with, statistically there is a high chance to make some improvement or even go into complete remission following thymectomy. I’ve been offered the video-assisted surgery option which takes longer to perform compared to the trans-sternal one but the recovery is a lot shorter (only a couple of weeks).

I have read about steroids as well and I admit that this would be a quicker and more efficient solution at least on a short term (there is research that claims that the treatment with steroids prevents the generalization of MG). Many participants in research studies or people I have met online have reported a significant improvement following steroids treatment but at the same time they complained about the numerous side-effects which are more noticeable after months of treatment. This is actually the main reason I declined my doctor’s offer of starting a course of steroids. The most common side-effects mentioned by MG sufferers already on steroids are:

• Osteoporosis (thinning of the bones)
• Increased chance of infections (as steroids may suppress the immune system). 
• Increase in blood pressure
• High blood sugar
• Skin problems
• Weight gain
• Muscle weakness (?!)
• Increased risk of developing cataracts
• Increased risk of duodenal and stomach ulcers.

I am perfectly aware that people react differently to steroids and they do not necessarily experience all the above mentioned adverse effects (which may vary with different types and dosages of steroids). However I don’t feel like taking any risks and ending by being further medicated for health problems caused by the steroids.

So here I am, ready to go under the knife! I’ve just been officially referred to a surgeon and now I’m waiting for an appointment to discuss the surgery in detail and arrange a ‘date’ with my thymus... I’m feeling incredibly relaxed overall although I have to admit that all this MG affair hits me really hard when I’m feeling depressed. So far I’ve managed to get up and fight without complaining too much about all these strange sensations in my body and accompanying worries and negative feelings.

Next stop: Oxford!

Oxford is probably the Olympus of Myasthenia Gravis in the UK. It is the place where highly qualified neurologists shed light on this mysterious disease through their widely published research and vast experience. I was lucky enough to be referred to a ‘god’ neurologist with extremely good reviews and qualifications (of course I Googled him prior to my appointment!).

I didn’t know what to expect from this appointment. Definitely not the presence of a couple of research students who observed the ‘patient’ (myself) as directed by the doctor. They have been introduced to me but I haven’t been asked whether I was comfortable or not with their participation. And I wasn’t at all... It was uncomfortable enough to be in a new hospital on my own, consulted by a doctor I didn’t know etc... Looking back I should have probably asked them whether at least I had a choice. My privacy was somehow invaded and I believe that this was the reason I didn’t take enough advantage of this appointment which is probably the most important so far.

Anyway the doctor and I have had the chance to discuss my symptoms which are ocular only at this stage (double vision more pronounced peripherally), side effects (mainly twitching) and the treatment I’ve been taking so far (Mestinon 60mg). The doctor told me that Mestinon does not work very well for people with pure ocular MG. Apparently there are six muscles that control the movement of the eye. Even if Mestinon works 90% and one of the muscles is not targeted for some reason then the double vision will persist. Therefore steroids are more effective in managing ocular symptoms although the side effects are far more numerous and severe. Take for example Prednisone which is a highly popular drug for MG. 

Having previously done some reading about steroids and their impact on health on a long run, I have decided to give them a miss and consider other options - which are quite limited at this stage. Normally the treatment route would be surgery i.e. thymectomy. This is actually the reason I have landed in this well-equipped centre for MG. They perform VATS (which stands for Video-Assisted Thoracic Surgery) which I was explained that takes longer to perform compared to a conventional 'open chest' surgery but the recovery from VATS is much faster. This is because the VATS requires only three small incisions which are minimally invasive. Basically I would need to stay in hospital 48 hours and go back to normal activities in about a couple of weeks. In terms of risks I’ve been told that I might have the surgery done and no improvement afterwards. The chances are that 1 in 4 people are not completely cured or improve at all. However, there seem to be research that shows that thymectomy preformed before the MG ‘explodes’ to other groups of muscles would decrease considerably the chances of generalization. 

My goal for the next couple of weeks is to read some more about thymectomy in Ocular MG as I really want to make an informed decision about the next step. Part of the information would be provided by the results for the blood test (Acetylcholine receptor antibodies) which was repeated and the EMG (Electromyography). I was administered EMG for the first time this month. EMG basically measures muscles’ activity in response to a nerve’s stimulation in order to detect neuromuscular abnormalities. During the test small needles (electrodes) have been inserted through my arm’s skin into the muscle. It was painful at times but not unbearable. I had a chat with the neurologist and found out that the test is very accurate and shows whether MG is generalized or not. Looking forward to the results now!

To conclude, I am in a position to decide whether 1) I continue with the treatment (Mestinon 60mg) I started six months ago, 2) switch to steroids or 3) undertake thymectomy. In case I would decide for the latter, I’ll be further referred to a surgeon who is going to give me more details about the procedure. Their door is open now and all I have to do is to book in. Apparently the waiting list is not too long (which is surprising thinking how long I usually wait for NHS appointments) so I can have this done in weeks. Considering that there is a chance to stop the MG from generalizing to other groups of muscles I would very much like to do it. However I need more time to get some extra information and prepare myself psychologically for this step.

One more thing I would like to add... The doctor I’ve just seen in Oxford is probably the first one to ask me how my condition affected my life. I was pleasantly surprised to be given the opportunity to talk about this but my enthusiasm was short as the doctor didn’t really seem to listen to what I said. He interrupted me repeatedly in the middle of a sentence and changed the subject quite a few times. What can be worse than that?! Well, probably not to be asked at all I presume. Which happened during my last appointment with a neuro-ophthalmologist a couple of days ago. He happens to be the most qualified doctor in double vision in my area but I personally haven’t been impressed first of all by his skills in relating to a patient. At least I was promised that my prisms will be soon incorporated in lens (more aesthetic and more expensive at the same time)! And also I had my Mestinon prescription renewed... However at this stage I am unsure whether improvements in my vision are due to the dosage which was increased a couple of months ago. And when I say that I’m thinking about days when my vision is normal (only when I’m looking perpendicularly) in intervals of time when presumably the effect of the medication has faded away. I’m not taking the third daily dose anymore in the evening (I have discussed this with the neurologist) and honestly I can’t see any difference at all. I haven’t considered going completely off medication though...

P.S. The weather is surprisingly hot these days in the UK but this does not seem to affect me too much. Happy days!