Category Archives: Medical & treatments

Neuropathic pain

Neuropathic pain is just a fancy word for pain which is coming from the nervous system.  It can also include altered sensation like burning, pins and needles, and sensitivity to touch or pressure.

When I was severely affected by M.E. my neuropathic pain was legion.  I had no idea there were so many types of pain and they tortured me every second of every day.  My legs burned like they were on fire – it was so bad I used to lie with wet towels wrapped round my thighs just to get 20 minutes of relief.  Luckily now I’m less severely affected this has improved and my muscles only burn if I’ve done too much.

I have had severe pins & needles in my hands and feet for nearly a quarter of a century.  It is constant and feels like I’m plugged in to the electric.  It was so bad when I was severely ill with M.E. that putting on shoes or walking was excruciating – it felt like the soles of my feet were full of crushed glass.  I also used to get pins and needles in my face, tongue and scalp.  Even now, as I lie in bed typing this, it feels like there’s a swarm of bees buzzing away under the skin in my feet.   It is not fun.

For about 4 years I was so sensitive to touch that I couldn’t bear anyone near me.  If someone inadvertently brushed my arm pain would shoot along my nerves and explode in my brain like a bomb.  Now I am less severely affected by M.E. this has improved but I still wince at sudden touch and having a gentle massage would bring both pleasure and discomfort.

Over two decades on I thought I’d had every type of neuropathic pain imaginable but I was wrong.  Three years ago I started getting sharp, stinging pain in my breasts.  It would come on suddenly for no reason and take my breath away.  I went to see my GP, who discovered my breasts were so lumpy from peri-menopausal hormones that a proper examination wasn’t possible, so sent me for an early mammogram.  Thankfully all was fine and having read menopause message boards online I discovered neuropathic pain is a ‘thing’ for some menopausal women.

The breast pain eventually went, to replaced by neuropathic pain in other parts of my cattle prod body.  My lower legs, ankles and feet have been particularly affected during the past year though I can get it just about anywhere.  I’m lying in bed minding my own business when suddenly it feels like I’ve been zapped by a cattle prod.  This can happen every couple of minutes and has, at times, seriously disrupted my sleep.  Not only that but I’m getting weird cramps in my calves and my toes keep going rigid.

I’ve been tested for peripheral neuropathy and, as far as I can remember, they concluded I didn’t have it.  If anything my nerves are hyper-responsive to stimuli not under-resonsive.  The only abnormality that ever shows up is massively brisk reflexes, which doctors don’t ever seem to be concerned about despite the fact that I get muscle twitching, cramps and jerking (as I type this my right big toe is rigid and pointing down to the sole of my foot and both large muscles in my thighs are in spasm).  I also get crawling sensations and huge goosebumps over the skin in my legs for absolutely no reason.

When I was severely affected by M.E. my gait (ie the way I walk) was obviously abnormal and I took very high loping steps.  How any doctor I saw could ever tell me I was fine and just needed to pull myself together still makes me livid – it just shows the power of suggestion (by psychiatrists that M.E. is a mental health issue) rather than impartially observing the clinical signs which could not have pointed towards neurological disease any harder if they’d tried.

Regular pain killers have zero effect on neuropathic pain.  The best drugs are anti-seizure meds such as Pregabalin and Gabapentin.  My Mum has had shingles twice, as well as severe post operative nerve pain, and swears by Pregabalin.  I also have friends with M.E. who couldn’t manage without it.  Of course, I’m so drug allergic there’s no way I’d tolerate something so potent.  Please, I beg you, don’t comment and ask if I’ve tried x, y or z drug, herb or treatment – it’s really insensitive to someone in my situation (I had an anxiety attack last night trying natural, organic yoghurt for the first time in 5 years :-/ ).  And, yes, I know all about magnesium – I take antacids every day and as a result my blood work shows a higher level of magnesium than should be there.

I just put up with all the weird nervy stuff and accept it as part and parcel of my myriad of diseases – I have no idea which part of the nerve stuff belongs to which illness, not that it matters.  I really hope the stinging pain bogs off when I’m through the menopause though cos I’m getting proper fed up of that :-/  I’m proper fed up of the menopause in general to be fair and just wish it would jog the hell along!

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Pushy, who me?!

In the UK, with our over-stretched, under-staffed and under-resourced NHS, you have to fight for what you need.  Most people don’t.  They sit back thinking Doctors know best and wait for the wheels of the giant health-care system to slowly grind into motion and it could cost them their lives.

As a teenager I was told my back pain was psychosomatic.  At the age of 16 I demanded a second opinion at a specialist spinal hospital and was diagnosed with congenital spinal stenosis and told I needed urgent surgery.  But if I’d just taken the word of the “specialists” at my local hospital I would have ended up in a wheelchair for the rest of my life.  As it is I’ve lived with chronic pain due to their incompetence for 40 years.

In my thirties I was told my scans were all fine and there was no reason for my chronic pain.  I was obviously “just sensitive” and needed to stop being such a wuss.  If it weren’t for my own research and request to see a Rheumatologist versed in Ehlers-Danlos Syndrome I would never have been diagnosed with hEDS.

In my forties I was told by numerous doctors that it was impossible to react to all drugs and nearly all food.  I was just anxious and my ‘episodes’ were ‘panic attacks’.  Again, if it weren’t for my own research and request to see Dr Seneviratne I would never have been diagnosed with MCAD and my ‘panic attacks’, aka anaphylaxis, could have killed me.

7 yeas ago my Mum had half her lung removed due to a tumor.  She had the surgery in Newcastle, but was admitted to our local hospital a week after returning home as she was in agony and very unwell.  She was there for 2 weeks, they didn’t give a toss about her, and her treatment was so poor and she was so ill we thought she’d die.  In desperation I rang the surgeon who had performed her surgery in Newcastle, something you’re not supposed to do, and told him of my concerns.  Luckily he was visiting our local hospital that week and asked me if I’d like him to pop in and check on my Mum.  “Yes please!”  So he did, tactfully suggested to the doctors looking after her that a change in medication might be warranted, and 4 days later my Mum was well enough to come home.

You have to be your own advocate.  It is not easy, however.  The NHS, on the whole, does not like to be told what to do or to be faced with patients who know more than they do which is often the case when it comes to rare diseases.  Doctors can be hugely defensive when faced with a clearly well-informed patient and I have born the brunt of passive-aggressive sarcasm and outright hostility.  I don’t give a shit what they think of me – I’m the one living with my symptoms, not them.

Yesterday morning I had had enough of my Dad’s lack of treatment.  Knowing that Xmas was looming and fuck all was going to get done over the holidays I took a firm grip on his health care.  The local neurologist, after 4 days, had still not rung me back and I was not willing to “leave it with” my GP, as after 36 hours the neurologist hadn’t rung her back either.

From good old Mr Google I had discovered that one of the neurologists at Newcastle, Dr Miller, had a special interest in CIPD and protein neuropathies, so I found his email address on a conference programme and emailed him directly, something frowned upon here in Britain.  I didn’t expect him to mail me back, so in the meantime I again rang my GP to ask her what was happening.

The receptionist said that although the GP was still in the building she was just about to leave for the day (it was 1pm) and in any event she had nothing new to tell me as the neurologist still hadn’t rung her back.  So I said “if the neurologist isn’t going to ring either me or the GP back we need another plan of action then don’t we!” and asked could I leave a message for her to ring me first thing in the morning.  “No” was the reply, “you can only leave a message for a GP if they’re actually on the premises”.  “But she is on the bloody premises!” I shouted down the phone, but was firmly told to ring back in the morning.  I put the phone down on the receptionist before I started issuing her with death threats.

Within 5 minutes the GP called and said that actually the neurologist had rung her back and said that we don’t have the facilities here to treat my Dad and he needed to see the specialist at Newcastle.  Like I’d told her would be the case on Monday!  She said she’d contact the Surgeon and request he urgently refer my Dad to Dr Miller, which she did there and then.

However, when I put the phone down I saw that Dr Miller had emailed me back!  He was very nice, which was a shock as neurologists can often have arrogant egos the size of a small country as I know from bitter experience over the years, and said he’d be happy to see my Dad but didn’t have an appointment available until 17th Jan.  If it were urgent, though, my Dad could be seen in the emergency neuro clinic.

I had no clue how urgent my Dad’s illness is.  All I know is that with early treatment permanent disability from CIDP can be avoided and symptoms actually reversed, but as the illness has been missed for an entire year and my Dad has declined rapidly in the last 3 months maybe it’s too late for treatment now in any event?  Dr Miller asked for a timeline of my Dad’s symptom progression so I emailed that to him late last night.  By 9am this morning he’d already replied that my Dad needs to be seen urgently and he’d passed his details on to the rapid access neurology clinic.  Not half an hour later the rapid access clinic called and my Dad is being seen at 10am on Christmas Eve.  I feel such vindication that my Dad does need urgent help and I wasn’t just being overly dramatic.

If the GP finds out I’ve contacted Dr Miller behind her back she will probably be well pissed, but I don’t care.  If she isn’t going to keep me in the loop I can’t be blamed for exploring other avenues of help and in any event I’ve told her on 3 separate occasions this year that I think my Dad’s kappa paraprotein is involved and that his stenosis isn’t explaining his symptoms and she has dismissed my concerns.  Turns out I was right after all.

Make a fuss.  Chase things up.  Do your own research (with reputable NHS based services) because you have a shed load more time to get clued up than a harassed GP.  Be prepared to nudge doctors in the right direction, especially if your disease is one with which they aren’t familiar.  If it’s needed, put yourself at the top of someone’s work pile.  But be polite, even when you’re telling someone the situation isn’t good enough – doctors are just people, who have lives and worries and stresses of their own.  I seem to have found the knack of being assertive yet still deferential, and if warranted I always thank the doctor involved, often by a little card or if they’ve really gone out of their way to be helpful with a bottle of wine or a box of chocolates.  We all like to be appreciated.

 

No Coincidences

As most of my regular readers will know, in the last 18 months my Dad has gone from going mountain climbing every week to being in a wheelchair.  In the last 6 months he’s also started having hand spasticity and awful vertigo/vomiting episodes and is clearly not well.

A routine blood test a year ago discovered an IgA kappa paraprotein band in his blood.  This can be a sign of either Multiple Myloma (a blood cancer), Smouldering Myeloma (a precursor to Multiple Myeloma) or MGUS (a warning sign for Myeloma which requires monitoring but no treatment).  As the rest of my Dad’s blood work was fine, he was classed as having MGUS despite having no further tests.  IMHO he should really have been referred to Haematology for a bone marrow biopsy to check for Smouldering Myeloma due to his symptoms of dizziness, vomiting, fatigue and nerve issues but wasn’t, a situation I’ve been unhappy about for some time.

An MRI scan in the Spring showed he had stenosis (ie narrowing) in his spinal canal due to bulging discs and he was referred to the Surgeons at Newcastle.  We waited, and waited and waited and eventually 7 months later he saw the Surgeon, who booked him in for surgery on New Year’s Eve but said that his severe symptoms couldn’t be accounted for by the stenosis (which I had been telling every doctor we’ve seen all year!) and referred him for further tests.

So this week he had another MRI scan and nerve conduction tests on his legs, which showed he had something called C.I.D.P. (Chronic Inflammatory Demylinating Polyneuropathy).  His immune system is basically eating the myelin sheath around his nerves 😦  His surgery was cancelled as the Surgeon said his symptoms were basically all coming from the CIDP, which can be associated with kappa paraproteins in the blood – no shit Sherlock.

CIDP used to be called Chronic Guillain Barre Syndrome.  GBS is a rare autoimmune disease where, often after an infection, the immune system starts attacking the nervous system.  And that’s where the weirdness starts.  My Mum developed acute Guillain Barre Syndrome last August.  My Dad had a slight cold which he fought off no problem.  He passed it to my Mum who, with severe heart and lung disease, became very ill indeed and was eventually diagnosed with Guillain Barre and rushed to hospital.  But it was after this that the kappa paraprotein was found in my Dad’s blood and he started having problems walking.

Guillain Barre Syndrome is an autoimmune disease.  It is not infectious or contagious.  However both my parents have developed this rare illness after the same bug, the ony difference being my Mum developed acute GBS and my Dad chronic GBS.  No-one is ever going to convince me that this is mere coincidence.

I’m so grateful we finally have a diagnosis for my Dad but I’m tearing my hair out trying to get urgent treatment for him.  The Surgeon washed his hands, saying he needed to see a neurologist.  He saw a neurologist last Monday (before the CIDP diagnosis) who at least referred him to Haemaology to check for Smouldering Myeloma, so I left a message for him to ring me urgently regarding my Dad’s new diagnosis……..four days ago and he hasn’t returned my call.  I rang his GP at 8.30am yesterday morning and she did ring me back saying she’d sort something out………..and she didn’t call me back either.  FFS!  My Dad is getting worse by the day and has been left untreated for nearly 18 months now.  He urgently needs steroids and an IV infusion of gammaglobulins to halt the progression of the CIDP but it’s the week before Xmas and no-one seems to give a shit.  I am so stressed :-/  If I’ve heard nothing from the GP by lunchtime I’ll ring and exert my legal right for him to be treated by whomever I like, and it will be James Miller a neurologist at the RVI in Newcastle who specializes in CIDP and protein neuropathies.  I’ve no idea if he’s the right person to see but one thing’s for sure, there won’t be a CIDP/protein neuropathy specialist at my little local hospital will there?  Wish me luck.

 

MGUS and the need to listen

Before I begin this post, I just want to give a shout out to a new blog on M.E. called ‘Words from a Hidden World’.  The blog is written by Naomi Whittingham who has suffered the tortures of hell, aka severe M.E., for decades.  I don’t know Naomi personally, but we have several friends in common and I’ve read many of her stunningly well written articles in the press and elsewhere over the years.  Despite huge cost to her health Naomi has tirelessly tried to educate on the realities of severe M.E., as this post relaying a talk she gave to Doctors and Clinicians demonstrates, and my blog post today was inspired by Naomi’s advice on how important it is for Doctors to listen to their patients.  I hope you’ll pay her brand new blog a visit – scroll right down to the bottom of the page to subscribe.


On to the topic of today’s blog post: the importance of listening and why Doctors appear to be so shit at it.

18 months ago my Dad had some routine blood tests and something called a kappa paratrotein band was detected that shouldn’t be there.  I’d never heard of kappa paratroteins so did some digging on Google and discovered they are implicated in three diseases: MGUS (monoclonal gammopathy of undetermined significance), SM (Smouldering Myeloma) and MM (Multiple Myeloma).

MGUS is rare but not massively uncommon, especially in older men.  There are usually no symptoms and the patient happily lives with the condition.  However, it does have to be monitored because between 1-3% of patients with MGUS each year go on to develop either Smouldering Myeloma or Multiple Myeloma, ie blood cancer.  If you go on the myeloma forums online, nearly everyone with MGUS is referred to a Haematologist to be checked for myeloma and if they are clear they can be monitored every 3-6 months by their GP.  Only my Dad has never seen a Haematologist or been checked for myeloma :-/

At around the same time as the MGUS was detected my previously fit and healthy Dad started having back and leg problems and to cut a very long story short 18 months later is now using a wheelchair because he can barely walk.  He had an MRI on his lower spine which showed stenosis and he’s currently waiting for surgery on his back.  However, he’s been having other issues like bilateral spasticity in his hands and horrendous vertigo and vomiting episodes which were initially a couple of months apart and are now a couple of weeks apart.  Having read about myeloma, four of the symptoms are:

  • Dizziness
  • Vomiting
  • Fatigue
  • Leg weakness/Neuropathy

and my Dad has all four.  I’ve repeatedly asked his GP if his MGUS could be the cause but she’s poo poohd the idea, saying his hand spasticity was just cramp, his vertigo and vomiting is migraine (despite my Dad being 79 and never having so much as a headache in his life before let alone a propensity to migraines) and his leg weakness is all coming from his back problem.  But I just knew in my heart that the MGUS was involved.  No-one was listening to me though.

In November my Dad was finally seen by the Surgeon who will perform his back surgery and he immediately said that my Dad’s stenosis wasn’t bad enough for my Dad to be so ill he was in a wheelchair.  He strongly suspects neuropathy………caused by the MGUS.  Up to 30% of patients with paraproteins in the blood develop neuropathy because it de-myelates the nerves.  So he’s ordered nerve conduction tests which my Dad is having on Monday.

The other thing paraproteins can do is cause bony growths, particularly on the spine, so the surgeon has also ordered an upper MRI scan of my Dad’s back to see if such a growth (ie lesion) has occurred and may be pressing on nerves leading to his head and causing the vomiting episodes.

Here’s the thing though.  If the MGUS has, over 18 months, caused neuropathy it is irreversible and my Dad will be in a wheelchair for the rest of his life.  But if the GP had listened to me and taken the MGUS into account sooner my Dad could have started on drugs which may have helped and he might not be in the state he’s in now.   And even if the GP didn’t want to listen to me my Dad should have been referred for a bone marrow biopsy to make sure he didn’t have Smouldering Myeloma. To say I’m livid is the understatement of the century.

Why do Doctors become so blinkered?  Why don’t they listen to clearly intelligent, well informed patients who know themselves and their loved ones so much better than anyone else on the planet?  Many of my Dad’s symptoms didn’t fit the stenosis diagnosis but his GP refused to consider there might be something else wrong, even in the face of blood tests which clearly showed he is at risk of myeloma and his symptoms actually fitted a myeloma diagnosis.  I swear if he does have cancer I’ll sodding well sue the GP.  Unluckily for her I wrote her a letter in April outlining my concerns about his kappa paraprotein level and the symptoms he had, so I have proof that I raised concerns which were ignored.

My poor Dad thinks he’s going to have a back operation and 3 months later will be on his feet and tickety boo.  No-one has the heart to tell him that won’t be the case and he is now probably permanently disabled – I dread to think what that will do to his mental health.  And I’m trying not to lie awake at night wondering how I will manage from now on with both parents in wheelchairs and hardly able to do a thing from themselves when I am also chronically ill and struggle to look after myself let alone two other people.  I’ll keep you posted as to how he gets on.

 

Healthcare Plan

Each month the ME Association in the UK do a quick online poll on various subjects, which I personally feel are a great way to keep the Charity up to date on the experiences of their members.

Their current poll asks whether ME patients have a ‘healthcare plan’.   According to the 2007 guidelines on ME/CFS provided by NICE (the National Institute for Health & Care Excellence on whom healthcare professionals in the UK rely for information) each healthcare professional should “make a care plan with you, which is looked at and kept up to date every time you see a healthcare professional about your CFS/ME.  It should include the symptoms and history of your condition, plans of treatments and self-help techniques you may be using, information and support needs, plans for work or education, and contact details of the healthcare professionals caring for you.  Your care should be given in ways that are suitable for you. This may mean having some tests or treatments at home or getting support and advice by telephone or email.”  Dream on, is all I can say to that!

I haven’t seen a doctor about my M.E. in nine years and only saw one then because I requested it as I had long-standing, unremitting pain (which turned out to be due to undiagnosed hEDS which I ended up realizing myself after the M.E. specialist was no help whatsoever).  I haven’t seen my GP about my M.E. since that time and there is no offer of regular monitoring, despite the fact I suffer with 4 chronic diseases and am menopausal.  There is most definitely no Plan.

There is also no Plan in place to manage or monitor my hEDS and I haven’t seen anyone to do with my genetic disease in over 5 years.  No……..wait…….. that’s not strictly true.  I did realize it had been 4 years since my last bone density scan and I should be having them every 3 years, so I contacted my GP to ask to have one done and she arranged it.  I didn’t actually see her though, it was all done over the phone and wouldn’t have happened at all if I hadn’t requested it.

The situation is even worse in respect to my MCAD.  There are no specialists in the north of England, my GP has never heard of it and since my diagnosis back in 2013 I’ve just been left to get on with it.

I have to be honest, though, and say that in respect of my M.E. I wouldn’t consider a healthcare Plan anyway.  Over the past 24 years, my dealings with the NHS have been exclusively negative with huge amounts of disbelief and pushing me to do Graded Exercise despite the fact that the one time I tried it I ended up in hospital with seizures for 3 weeks and was bedridden for 2 years afterwards.  A psychologist or psychiatrist is always involved (during said 3 week hospital stay I didn’t see one immunologist or neurologist, but I did see a psychologist who told me I was anorexic and wouldn’t accept the reason I was struggling to eat was that I was too weak to chew solid food).  I’m sure my medical notes are peppered with comments about my symptoms being psychosomatic or exaggerated for attention.  In addition, there are no ‘treatments’ for M.E., so I’m not entirely sure what I’d be seeing a doctor for.  Having said all that, however, I still think someone with healthcare needs as long-standing and complex as mine should be offered a yearly check including a full blood work up, which is particularly important as one ages and becomes more prone to things like heart disease from years of inactivity.

I feel differently in respect of my hEDS and feel that a Plan would be useful.  I’d like a specialist point of contact – someone I could ring for advice on when I should be having a scan or x-rays after an injury and a check kept on the progression of my disease.  Realistically I should be able to ask my GP if I had a question, but being as though she knows about as much about hEDS as my next door neighbour she probably wouldn’t be all that helpful.

I’d absolutely love to be having my MCAD monitored and a Plan put in place for my flares or if I need to go into hospital for other things, but I know that’s pie in the sky and I’m more likely to win this weeks Lotto.

I’m not quite sure why I’ve always been completely ignored by the medical profession.  Is it because my health is too complex and doctors feel overwhelmed by everything that’s wrong with me?  Is it because I live in a rural area with no specialists?  Is it because I’ve been ill for over two decades and have tried every treatment known to man so am written off?  Probably a combination of all of the above, however I should still be being monitored and a check kept on my progress and I do feel very let down that this has never happened, not even when I was bedridden for ten years and so ill I nearly died.  If I couldn’t even get a GP to come to the house to see me then it’s no surprise I don’t see anyone now I’m less severely affected.

Supplements: the deadly truth?

1 in 3 people in the UK take a supplement of one kind or another, and those with ill health are high on the list.  The most popular supplements are multi-vitamins containing anti-oxidants closely followed by Vitamin C.  Claims range from helping stave off Alzheimer’s, Arthritis and Cancers to actually prolonging life which, if true, make them more potent than most drugs yet supplements are not regulated in the same way as drugs – in fact, they’re not regulated at all.

I watched a fascinating BBC Horizon documentary last Thursday night called ‘Vitamin Pills: Miracle or Myth’ which looked at 60 years of research into Vitamin supplements and it made for interesting, and at times worrying, viewing.  It started off by measuring the vitamins and minerals in the blood of 3 people of differing ages, sexes and diets.  One was a female student who had an addiction to Curly Fries and admitted she ate like crap.  The other was a 30-something female yoga teacher who ate a ‘healthy’ diet with loads of fresh fruit and veg and very little processed food, and the third was the reporter, a middle aged Chinese man who loved takeaways washed down with a beer.  When measured, all three had the recommended levels of vitamins and minerals in their bodies…………….well, all except the woman with the ‘healthy’ diet who was ironically lacking in iron.  For the most part we are all getting enough nutrients from our food, whatever kind of diet we follow.

There are, however, groups of people who may need supplementation.  If you are housebound or your working life means you spend hardly any time outdoors you will probably need a Vitamin D supplement.  If you are a female teenager or female adult with heavy periods you may need an iron supplement. If you are pregnant you should take a folic acid supplement,  and if you have any kind of dietary restrictions, eg. Coeliac Disease, you may need extra help.  But, on the whole, most of us are getting enough, or more than enough, vitamins and minerals from our food.  I haven’t eaten meat for 25 years yet only became deficient in iron when a) I had to change my diet due to my Histamine Intolerance and b) this coincided with heavier periods due to the peri-menopause.  All my other levels, including B12, have always been either good or excellent.

The whole ‘free radical/oxidative stress’ argument for taking anti-oxidants was started by one researcher in the 1950s.  He discovered that exercise initiated a period of oxidative stress within the body which, he assumed, was bad for us so looked at ways of counter-acting it using anti-oxidant supplements.  This snowballed over the next few decades as companies joined the band wagon and before we knew it anti-oxidants were miracle supplements which counter-acted free radical damage, staved off aging, made us look and feel younger, warded off diseases and actually prolonged our lives.  The only problem being it’s bunkum.  More recent research has shown that the oxidative stress produced by our bodies after exercise is actually needed and if we interfere with that we are actually harming ourselves!  One researcher looked back at trials from the last 50 years from all over the world and concluded that taking anti-oxidant supplements either had zero effect on disease and wellbeing or, more worryingly, actually increased mortality (one study was stopped after the mortality rate from lung cancer increased by 28% for those taking antioxidant supplements).

We’re also encouraged via persuasive marketing to buy various herbs and foods which have been condensed down into supplement form.  The programme looked at Green Tea which you can buy condensed into a pill and which, after only 3 months, gave one man liver disease so severe he needed an immediate liver transplant and is now in kidney failure – before this he was totally healthy.  Obviously this isn’t going to happen to everyone but the fact it happens at all is huge cause for concern when there is virtually no regulation on supplements and no legal obligation to make manufacturers prove the claims they make about their health effects or provide warnings of potential side effects.  One of my good friends who has had severe M.E. for decades decided to try Spatone iron water for her proven low iron levels – it led to severe GERD which has continued ever since and has left her in tortuous daily pain.  I, on the other hand, take 2 sachets a day and it’s been brilliantly helpful to me.  None of us know how we’re going to react to supplements and we aren’t warned they may have serious side effects, may interfere with medication or be contra-indicated for a disease from which we may be suffering.  Also, according to the research, if we are dieting or on restricted calories for whatever reason we may absorb more of the active ingredients of herbs and supplements and so be unwittingly taking higher than recommended doses.

I’m not anti-supplements and have benefitted hugely from taking iron and, in winter, Vitamin D but I am anti lack of evidence, regulation and monitoring.  Companies selling supplements aren’t the slightest bit interested in hearing about issues with their products, but there is a way of reporting them via the Yellow Card Scheme which is a Government run website for feedback on adverse reactions to a range of products, including drugs, herbs and homeopathic remedies.  We don’t do this enough and if the Government don’t know there’s a problem they won’t know to look into it.

The fact that simple supplements can in some cases, decrease rather than increase life span is shocking to me and just goes to prove that our bodies are mind-boglingly sophisticated entities that have kept us alive as a species for millennia without any intervention.  For most people popping a herb or supplement won’t do anything much other than produce very expensive wee, but for some they can cause untold misery or even prove fatal.  I personally don’t take anything unless my blood work shows I need to and then make sure I have regular tests to monitor any effect, which I think is doubly important when you have mast cell disease and your body may react in ways not usually seen.

 

Visual disturbance research

A few months ago I came across some research on Visual Snow being done in the UK by the dept for Neuroscience at King’s College in conjunction with the Eye on Vision Foundation.  I’ve talked about my severe floaters here on my blog but that’s not the only issue I have with my vision and this research, amongst other things, is looking at the correlation between various types of ‘visual aura’.

Auras are a kind of hallucination – your eyes are seeing things which simply aren’t there but trust me when I say they are all too real to you.  There are various kinds of visual aura and, as per bloody usual, I have most of them – yes, I know I’m greedy 😉

VISUAL SNOW

The research is focusing on Visual Snow, which is a hallucination which looks just like the name suggests – falling snow or moving white noise.  Luckily for me mine is only  mild and I only really notice it in low light against dark objects and if I concentrate on it, but for some people it is hugely debilitating and they spend their whole lives trying to see past the bits.  Mine is white snow but for other people it’s multi-coloured.  Here is what mine looks like against a black background (you will have to concentrate for a few seconds on the black square for the snow to become visible):

BLUE FIELD ENTOPIC PHENOMENON

I noticed this for the first time earlier on this year and it totally freaked me out.  It was a lovely, sunny spring day and my friend and I were sitting down by the river.  I lay back on the grass to gaze up at the blue sky……….and saw dozens of white flashing wriggy dots that looked a bit like small worms!  My initial thought was that I had a parasite in my blood and the second thought was that my retina had become detached, something those with Ehlers-Danlos Syndrome are prone to, but luckily I was only at the hospital the day before with my floaters and had had a thorough eye exam so knew my retina were actually fine.  I came home and went on Google only to discover Blue Field Entopic Phenomenon – what I was seeing were leukocytes moving in the capillaries of my retina.  I only have BFEP when I look up to a bright blue sky and mine looks something like this – the white dots really are very bright and sparkly:

FLOATERS

I’ve talked about my floaters before here on my blog.  Floaters are caused by the vitreous gel inside the eye which is clumping together and causing a shadow to be cast on the retina, although I can weirdly even see them when I have my eyes closed and it’s dark.  Like all shadows they are blurry and if there are large or numerous floaters this can cause problems with vision.  Here is what my eyesight looks like due to floaters – they drive me absolutely and utterly insane:


The scary thing is that there is currently zero research being done on floaters.  None.  Yet they dominate my life, have left me feeling depressed, cause severe eye strain and headaches, make me feel dizzy and disorientated due to the blur they place on my vision and have made what used to be pleasurable hobbies, like my photography and reading, difficult at best and impossible at worst 😦

MIGRAINE AURA

I started with aura migraines in my late teens and have been having them ever since.  The hallucination usually starts off as a small flashing light in the periphery of my vision which you can see in the first picture but within minutes covers most of my sight.  They can happen at any time and have frequently woken me from sleep – I actually dream I have flashing lights and wake up suddenly in the wee small hours to find the lights are real and I’m starting with a migraine.  I don’t have head pain with aura migraines (unlike my common migraines which are excruciating) but they do make me feel spaced out.  When you read about aura migraines the blurb usually says they only last a few minutes but mine can last anything up to an hour or even longer unless I can manage to lie down with my eyes shut in a dark, quiet room or eat some carbs, something like a slice of toast is good.  Apologies for the poor second image – it’s the best I can do, but my actual aura is like having a kaleidoscope in my eyes!

Alongside these visual disturbances I also suffer from other sight problems, including:

  • Light sensitivity (which, when my ME was severe, was like living with a firework display in my brain 24/7, even with my eyes shut)
  • Difficulty seeing in low light
  • Halos round lights at night – particularly bad when driving
  • And related symptoms like tinnitus and headaches.

There has to be a correlation between all these symptoms – when you have one it’s much more likely you’ll have some, or all, of the others and I for one am desperate for answers and treatment to be found, particularly for my floaters.  It will be just my luck, though, that the treatment will involve some drug or other which I won’t be able to take because as you know my mast cell disease causes me to have anaphylaxis to just about every medication known to man :-/  However, in taking part in this research I hope I’m helping towards the understanding of these conditions and that people in the future won’t have to suffer in the way I do.