Dr Jacob QE Birmingham appt 17.10.17 (new, new neuro!)

Big update!

I feel completely confused. I’ve been treated for what I believed was seronegative mg for the past 13 years. Today, I met my new (new) neurologist, who spent time going over my past medical history, examining me physically with strength tests and reaction tests and who then informed me he isn’t convinced I’ve got mg after all and that I may have something called Chronic Fatigue Syndrome (ME).

He believes my mg diagnosis was uncertain from day one, as previous blood tests for acetylcholine were negative, as were single fibre EMG. He wasn’t interested in a mildly positive tension test I had done way back when, as he said he wouldn’t use that now to diagnose mg (something about it being too sensitive maybe? I can’t recall what he said). Or that I’ve had generally good results until very recently with mestinon. He was more interested in previous medical history of recurrent blood clots, a car accident I had nearly 20 years ago that gave me neck, back and shoulder injuries and hormonal/ psychological factors (these were the reasons he felt lead to consider CFS/ME as there is a link between this and previous viral infections and psychological traumas, of which it turns out I have quite a few, to include loss of a parent as a child, serious health issues as a young adult, miscarriages and car accidents plus the loss of a business to name a few).

This is a list of symptoms for CFS

The main symptom of CFS/ME is feeling extremely tired and generally unwell.

In addition, people with CFS/ME may have other symptoms, including:

•sleep problems

•muscle or joint pain

•headaches

•sore throat or sore glands that aren’t swollen

•problems thinking, remembering or concentrating

•flu-like symptoms

•feeling dizzy or sick

•fast or irregular heartbeats (heart palpitations)

CFS is considered if you have 4 or more symptoms off this list. Other than being tired (and fatigued), I do get headaches, but these are related to the damage from too many car accidents, I do get palpitations (as Ive written about in my blog from the two lots of cardiology tests I’ve had done), I do have sleep problems (it has a name and is 6 months old!), and very occasional dizziness. That’s it.

Now here’s a list of the more common mg symptoms

Droopy eyelids – I have this

double vision – I occasionally have this

problems with chewing – not really a problem

and difficulty swallowing – I occasionally choke (about 5 times across a week)

slurred speech – occasional

husky, quiet or nasal-sounding voice – I do get this every day

weak arms, legs or neck – all of these every day

shortness of breath – daily

occasionally serious breathing difficulties – no

difficulty holding the head up – yes

difficulty with physical tasks, such as lifting, (yes, I don’t bathe my baby on my own) getting up from sitting to standing (yes, getting up off the floor involves a crawl to the nearest piece of furniture to balance against), climbing stairs (yes, I’ve been known to go up on my knees and down on my bum if I’m carrying my baby), brushing teeth or washing hair (yes, I just don’t have the energy to wash my hair and leave it as long as I can before tackling the task)

a waddling walk – yes!

aching muscles after using them – all the time.

So maybe you can see why I’m a little confused? How is that not a picture of mg? What exactly do I have to have to be mg and how is that closer to CFS than mg? I just don’t get it.

Anyway, had bloods done. Redoing achr and testing LRP4 (some mg specific blood tests), plus talk of referring me for ‘exercise therapy’ as a treatment for CFS (please bear in mind two years ago I climbed snowdon and walked 5 miles three times a week – it’s been a fairly rapid decline in mobility and severity of symptoms). I’ll also be getting a ct scan done once I’ve finished breast feeding my son (so approx March 2018).

So as it stands, I may or may not have mg and may or may not have CFS/ ME.

I suddenly feel very lost.

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My fight ❤️

First time blog from a lovely young friend of mine, sharing her story about mg. well done Amelia!

Amelias Journey

“Hello I’m Amelia, I’m 15 years old and I have Myasthenia Gravis”❤️

In February 2014, I was diagnosed with Myasthenia Gravis, a rare muscle condition which causes severe muscle weakness!

Before my diagnosis I experienced continuous weakness in my body for a long 5 months. People would say “your face looks silly, smile!” Or “stop falling, it’s embarrassing!” My eyes felt heavy, my speech was slurred, my legs were wobbly and my arms were weak. Everything felt impossible to me. I couldn’t even smile! I went to 4 doctors and they all agreed it was behavior so they referred me to a psychologist!! Over a few weeks, my weakness got a lot worse. Along with my other symptoms. My neck started to feel heavy, I stopped eating and I lost a lot of weight. It was so frustrating, not knowing why I couldn’t do simple things! It was such a…

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Things that only matter if you are a tall woman

So apparently, it’s official. After a study done some point last year, women in Europe are taller now than ever before. Whether this has anything to do with standards of living in the West being higher, so we’ve access to more, better quality food, healthcare or whatever – we’re bigger and we know it.

And as we have this as fact, you’d think this would go in the favour of us particularly tall versions of the female of the species right? You could not be more wrong. I’m a shade under 6 feet tall myself. I’m generally a good 5 or 6 inches taller than any of my girlfriends (make that any ‘average’ women in England!).

Clothes shopping sucks

It’s supposedly one of those passtimes women do to relax/ do as a social thing with friends/ lift you when times are hard etc etc. Well let me tell you, when you have an inseam of 35 inches + and a should width any line backer would be proud of, you can count buying trousers or pretty little tops right out. Skinny jeans become Capri pants, ‘maxi’ fits more like a midi, (midi is mini and mini is obscene!) and don’t even start me on bootcut. I don’t own a shirt or top with more than a 3/4 length sleeve. And tights… flipping tights! let’s just say you know you’re tall when the gusset is so stretched it shows below your hemline!

Clothes shopping generally brings out the worst in me, and causes more arguments with my husband than talking politics or money. Best done alone or avoided all together.

People let you know you’re tall

ALL THE TIME!

Its so weird. It’s like there’s some misconception that we may not have realised we stand head and shoulders above our female (and many male) counterparts. In fact I’ve lost count of the times a stranger will pip “blimey, you’re tall” (“am I? In all my 38 years I hadn’t noticed”) or queried my height before going through the ridiculous (and humiliating) ritual of saying “stand next to me… eeek, look how much taller you are!!!” As they over emphasise the distance between the top of their heads and your chin.

Oh and if you ever, everrrr catch yourself considering you might, just might fancy wearing heels tonight, just make sure you’re ready for the onslaught of stupidity, such as, “aren’t you tall enough already”, or, my personal fave “you’re brave, I wouldn’t want to be as tall as you” (yes, people have been that rude). Have your responses ready ladies. It’s gonna be a long night.

You weigh more than the average man!

Not kidding.

Tall normal is so far from average height normal when it comes to weight. In fact my best weight is closer to the fat weight of my best friends! I may have delicate looking wrists, but just try to lift me up and you’ll discover … I am more in the league of the Hulk!

You are unintentionally the cause of other people’s annoyance

Ok, I admit. It’s not always unintentional.

Whether this is due to leg room on a train or budget airline (“what do you mean, I’m kicking your seat? My knees are under my chin and I’ve tucked my own feet under my seat!), blocking the view at the cinema or concert, being nearly 6 foot tall isn’t nearly as glam as these supermodels will have you believe!

You might have trouble meeting single tall men

Now, this has not been an issue to me being married to a 6+ footer guy for many years, but many of the tall community tell me that all the tall blokes are dating or married to short ladies… try as I might to encourage these ladies without laughing at them for having the tall men stolen by shorties, and reminding them that being of Amazonian proportion is a plus point, in actual fact it’s probably IS because we’re just too intimidating! We’re certainly not ‘girl next door’ and I’m betting ‘girl 3 floors up’ doesn’t have the same ring.

But there are some positives to all this. Oh yes.

We always get ‘shotgun’. I mean how can our average friends possibly sit in the front passenger seat when legs almighty is around? And to be fair, we DO get the best view at gigs, we don’t need to ask for help to reach high shelves and we make skinny jeans and heels look GOOOOOD. And you make new friends ALL the time (you gravitate to your tall sisters in any social situation). A bit like VW or robin reliant owners – you kind of wave at each other across the street in acknowledgement because you know, you just KNOW that person would have spent a fortune in time and money to find THOSE shoes in THAT size to go with the skirt that fits almost just right…. just maybe an inch or so too short.

“Are you speaking France?”

My eldest son is currently completely obsessed with the idea of “speaking France”. It doesn’t matter how often I correct him and explain that the people living in France speak French, every time he hears a foreign language I am asked “are they speaking France”.

Anyway, he thinks it’s hilarious to get me to speak in French and regularly asks me to “count up to 10 in France mom”, and of course I oblige, it’s great to be able to encourage an interest in something other than Thomas the Tank Engine or playing on the iPad.

He also discovered I can speak Spanish.

Now here’s where I need to be a little bit more honest. In actual fact, I can speak precisely 10 words of Spanish, those being the numbers 1-10. Although what he doesn’t yet realise is my French is limited to onlyabout 15 words – the numbers 1-10, the phrase ‘parlez vous anglais’ (yes, I had to google the spelling) and the two words ‘mon ami’. And that’s only because my name is Amy and I know my name is taken from the French work for ‘friend’.

So that’s my 15 French words. I mean, I’m almost fluent!

But it doesn’t matter, my son thinks I’m wonderfully clever and falls about laughing every time I count to 10 for him in any other language other than English, and there’s no better sound I’d rather hear… so who am I to rain on his parade?

There are only 2 rules in the ACV club:

Rule one. Don’t drink this stuff neat.

It burns.

Like fire.

And I’m not going to tell you why or how I know this.

And I don’t just mean a little bit.

You know that burn you get when you drink neat whiskey? It’s not like that. Oh no, this is like drinking the lava from mount doom of Mordor fame. In fact I later discovered you can actually burn your oesophagus drinking apple cider vinegar neat, not something I’d recommend. Having done a bit of research, the general consensus is a tablespoon of apple cider vinegar a glass of water (8oz glass). Some drink it first thing in the morning, others drink it before or after a meal. It does need to be unpasteurized, unfiltered and organic. Most people used Braggs but I can’t get that locally and didn’t want to wait for an online delivery to get here, so i went with what I could find that fit the criteria.

Rule two. This is NOT to replace any meal! Repeat after me, “I’m not Beyoncé”, (or any other celeb that it is claimed to have done the ACV/cayenne/lemon/honey detox diet). I don’t want to lose a million pounds in a month. I just want to rid myself of the need to devour every source of sugar in my house after the 4pm slump. I mean come on, I’ve even taken to eating my sons coco pops and frosted cereal to quell the need to absorb my daily sugar quota. Not to mention vats of ice cream, my body weight in chocolate and I am solely responsible for Greggs profits increasing in the first quarter. Not good for me. Besides, I’m still breast feeding so can’t drop weight quickly as it could affect my milk supply. I’d just like to eat regular meals without sugary snacks distorting my resolve.

I decided to try this for a couple of reasons. First is that I’d normally do a C9 (cleanse) to kickstart my taste buds and ditch the caffeine and sugar. I can’t do that right now as the supplements transfer to baby during feeds (beside the restricted calories would be a problem for baby!) and I’m currently on warfarin which means I can’t have my daily aloe Vera shot as it messes with the absorption of warfarin which is something I’m not prepared to risk.

ACV is supposed to help the body with absorbing more nutrients from your food (although just adding it to salad dressing would give the same results without resorting to drinking it I believe), and it can reduce blood sugar spikes, therefore reducing cravings. I don’t want a quick fix, but want something that could help make a weight-loss program more effective in the long term. I’ve also read that it acts as an anti inflammatory, reducing bloating and could improve my post pregnancy, hormonally challenged skin. And who wouldn’t want clear skin?

So here I am, day one with my first glass of diluted ACV.

…..

Day 1

Dannng!

Oh. My. Life.

That stuff is vile!

I nearly couldn’t swallow it. It kind of stayed in my mouth for longer than I wanted as I didn’t know what to do with it.

It’s acidic smell hits your nostrils so hard that your mouth is already trying to recoil before the glass hits your lips!

Then there’s the taste.

Oh. My. Life

Think acid, apples and vinegar. That’s it. I mean, who’s daft enough to drink the stuff you slather on your chips anyway? Oh yea, that would be me.

It is so strong – it almost makes me feel like my stomach is bloated, which is what it’s supposed to counteract. Yuck. I’m actually an idiot.

Day 2

I only realised I’d mis-measured the acv after I’d drank it yesterday, so I’d actually had 2 tablespoons of the stuff. No wonder I struggled! (Yes, told you I’m an idiot). So today I did one tablespoon and obviously it was much easier to drink. I also held my breath and drank the lot without coming up for air. (It’s quite hard to drink a whole pint whilst holding your breath and drinking vinegar – try it, just for fun). Much better. I did notice I hadn’t eaten any snacks, but I don’t know if it’s psychological because I know I’m drinking this stuff.

Day three

Same again – downed in one!

Definitely a difference in snacking and even ate my tea later than usual yesterday.

I woke with one of my headaches today. I get them fairly regularly and it’s related to a car accident (or should I say the many car accidents) I had years ago where I damaged my upper spine so nerves get trapped. It usually lasts three or more days, so I’m going to try drinking this a few times today to see if the anti inflammatory properties make any difference.

Day 4

My sons birthday. Today I’ll mostly be eating cake. Of many varieties. No amount of ACV is going to help.

Day 5

I realised today I hardly noticed the taste. Maybe it’s because I take a deep breath and don’t stop glugging until it’s an empty glass. The sudden inhale of air at the end nearly suffocates me with the acid vapour hitting my throat. I’ve forgotten why I’m doing this. I ate about 3 cakes today (leftovers from yesterday). So much for breaking this sweet tooth! I did notice my headache from the other day didn’t last as long. That’s something anyway.

Day 6

I only remembered to drink this about an hour before I ate tea. I don’t really notice the taste at all now. I’m not noticing much change to my hormonal skin yet, but skin has a 28-30 day ‘cycle’, so it could be the end of the month before I see much evidence of that.

Day 7

So, I’ve completed 7 days. It’s hard to know if I feel overly different. I’ve got a baby that wakes me once at night and then again early morning, a 5 year old that won’t stay in bed past 6.30 and a bunch of chronic illnesses. I do think my skin is starting to benefit and I feel less bloated and have probably cut my sugar intake dramatically (although choosing the week of the tea party wasn’t my smartest move). I haven’t touched sugary cereal, eaten chocolate and my need for crisps and other savoury snacks is reduced. I wish I’d weighed myself before I started now. I do think I’ll carry it on because a) what’s the harm in it, and b) I just feel I need to do it for a month to give it a fair go.

Let me know if you (are daft enough). take on the 7 day challenge.

It has been said that I can go a little too far

For example, this week I was caught spraying doorways, window frames, curtains, carpets, stairs with a mixture containing peppermint essential oil. I’ve read on numerous websites that spiders avoid peppermint. I don’t know why. I don’t know the scientific reason. I mean, do spiders have noses? Don’t they like the smell of it? Anyway, it’s been said that to keep them at bay, spray windows and door frames with peppermint.

In my mind (the one that is altered due to my complete and irrational fear of these things), I took that to mean ‘saturate every blooming square inch of your house, leave no item unbathed’.

After one particular spray-fest, my husband came upstairs to say goodnight to our kids. His eyes streaming with tears and nose running from the menthol that peppermint exhumes and says “amy, pray tell, why doth mine house resemble that of a peppermint”, or words to that effect. You can imagine his response to my reply “to keep the spiders out”.

You get the drift. If there’s rumour it might work/ its a natural/ holistic remedy/ there’s a chance it could alter my life/ help me lose weight/ stop my hair being frizzy (as if)/ make me a domestic goddess , then there’s a chance I’ve pinned it on Pinterest and written a list containing said items.

Tomorrow, I’ll share another example of testing the theories, this time it’s all about the apple cider vinegar. Until then, keep on spraying that peppermint.

(I added 12 drops of peppermint oil to a spray bottle of water and gave it a good shake before using).

August, where did you go?

The month I’ve waited all year for has flown by so fast we’re almost in our second week of September and I wasn’t ready yet.

I longed for August for a break. I was so tired with poor health, a tough pregnancy, then dealing with the demands of a new born, I just wanted August here to be able to chill out, play with my boys and not have to do the morning school run for 6 weeks. You know, those lazy mornings of not getting dressed unless we need too, late breakfasts and carpet picnics. It just stretched out before me, all those days.

I wanted August to come so my little boy could be 5 at last like all his classmates that have been 5 for forever. The downside of August birthdays means most of your mates are always a year older and that’s a big deal when your 4, nearly 5.

I wanted August here to enjoy long sunny days (ahem… yes, I’m aware I live in England so chances were slim), picnics, visit the seaside, days out, going away for family and friends weekend visits. Not forgetting the play dates we were going to arrange…all those lovely play dates.

And now it’s September. I don’t feel rested from last terms school run. My boy turned 5! How is he even 5? I only had him last year didn’t I? And I only managed one long weekend visit to one friend and no family. I think we did maybe 3 or 4 play dates the whole summer (yes, I suck). I need another month off to do the things I didn’t do.

And tomorrow he goes back to school. He’s going to be in a new class, with a different group of friends, a new teacher. I didn’t do half the stuff I planned for him.

Yet we did so much.

We got Arley Arboretum annual passes and went for a couple of picnics and got ourselves lost in the maze. We went to Mary Stevens park on his new bike and played with his football and baseball stuff. And he defititely tried out the new water play area – how cool is that place! We visited our friends in Congleton and went on a narrow gauge engine and had a pie at our favourite eatery in Trentham shopping village. At Kinver park we went on the mini steam trains. We didn’t get to the beach, but we got our garden finished. We picked strawberries, went blackberry picking and visited a farm where we petted animals. We tested out the little tea shop we’ve been threatening to go to for months and ate cakes as big as our heads! And my youngest got big. Boy did he get big in those 6 weeks. And loud.

Oh, and I started upcycling wooden furniture because I had nothing better to do…

And yet here we are, the night before school. Kids are both in bed. I’ve just found the one piece of homework we were supposed to do, very much not done in the back of my diary and his new school uniform, is now labeled and ironed ready for a new year. Oh gosh, I’m not ready for school!

I am also not going to become the screaming banshee I usually turn into at around 8.20 every other school morning. A new leaf is being turned. I will not start yelling about him getting his shoes on and and losing my cool when he still isn’t wearing them as I’m squeezing the baby into his car seat with 30 seconds to go before we need to be out the door. I won’t mention cleaning his teeth, or tell him 432 times to eat his breakfast quicker (in my best batman growl). No way am I going to shriek at him when he can’t find his book bag that I left in the middle of his bedroom floor ready for him, or tell him to “open your eyes, it’s right in front of you”. And I absolutely refuse to be dashing out the door 5 minutes late so I have to park the other side of the village because all the car parking spaces got taken already. Tomorrow it’s going to go like clockwork. And I’ll just come home from the drop off and drink a nice cup of tea (whilst it’s still warm) without the baby screaming once. Yup.

Tomorrow is going to be fine.