OK hands up who really wants to be disabled?

I can imagine that so many of us start our journey thinking as the symptoms are so real and some really painful it will just be a case of making an appointment to see the doctor, and shortly after that being diagnosed with an illness that will change our lives for ever. At least being treated with respect and empathy and getting some sort of treatment would be good.

So hands up to all of you reading this who felt as though you were treated like a malingerer a hypochondriac, and was simply not taken seriously?

I can remember it well even now after my first real weird symptom of going blind. OK so you go blind right? Answers on a postcard please: Would you really honestly believe that 16 years later you were finally told you had a life changing disease that was probably missed when you had 2 episodes of blindness in one eye?

or would you have thought you would have been seen urgently to make sure you hadn’t had a stroke or a brain tumour? Right i was told it was probably down to heat lol.

Really I mean on holiday enjoying myself no stress linked arm in arm with my hubby having a fab time popping in and out of shops excited about finding new treasures from Brazil (no nuts though or coffee) just lovely souvenirs and fab jewellery.

Happy on holiday in Brazil sorry about the legs

There I was looking at jewellery and suddenly like someone had put one of those patches over my eye i couldn’t see in the left eye. I grabbed mike and we went out. I cover this on my first blog so i wont repeat but it was scary as hell. It happened again when we got home. Doctor wasn’t even interested said it was probably the heat now that was the start of 16 years of hell for me.

how many others of you have started your journey with something really scary but just feel that you are not being taken seriously? I believe strongly if the medical profession actually bloody listened they would save themselves a lot of money, time and their patients a lot of unnecessary angst.

I mean come on really who wants to be so ill they cant go back to the job they loved, they are in constant pain, they are frightened as they don’t understand why they feel that way and they are forced to hang about waiting and waiting because each test or appointment to see a specialist takes times months even and months turn into years, and one symptoms that started it all turns into many and varied and you end up feeling like a nut job.

Medicine men are you really so convinced just because we don’t present as a classic case of some disease that we are pretending? Just ask me this why the hell would we want to be?

It was probably easier to get a diagnosis from a real medicine man.

Why is it I have noticed more and more people becoming sick with so many of the same symptoms, so many people living with invisible illnesses, so many people crying in frustration and all with the same voices the same pain. WHAT THE HELL IS GOING ON. COME ON listen to them they are all over the world not just in one place, everywhere. I can guarantee you can go to any country on the Internet visit any of the forums for health and find so many people with the same or similar things going on.

How many people need to be visiting your offices, how many people have to struggle for months and years to be taken seriously.

Are you so dense you dont see it, or dont want to see it. Take these people seriously. No one wants to be ill, no one wants to sit bored out of their brains laying in bed barely moving frightened and alone. Listen to them.

Even if it turns out to be down to a pysch issue its still an illness. Dont fob people off.

Why do people turn to Dr Google do you think?

Dr Google has become an EGGSPERT because so many people are asking him the same questions and seeking answers to this new disease whatever it is.

A classic question to Dr Google is:

Pins and needles in feet and legs. Answer will take you too:
https://www.nhs.uk/conditions/pins-and-needles/

So anxious and scared people read the link and see words like Multiple Sclerosis they will ignore the less scary ones. This is just a simple example but so so many people are suffering with pins and needles, muscle pain, joint pain, fatigue, balance issues, bladder issues are they all pretending. You as medicine men do trials on drugs so why not do trials on illness and the way people first approach seeking answers?

Wouldn’t that be more sensible then throwing a load of sick people on scrap heaps?

When I started my journey I had a fabulous job earning around £24,000 per annum (dollar equivalent = $31252.52). Really I mean what would be the sense of me giving it all up to lay on my recliner and while away the days bored out of my brains just trying to exist. There is no sudden reward for being ill or disabled that would even quantify such a ridiculous notion.

11th September 2006 for me was the day it really all started. The day before I had gone car booting which i loved. Lately I had noticed it was becoming harder and harder to walk around one, it would make my leg muscles cramp up and I felt like I was walking through concrete. If it was cool it was so much easier, if it was warm it was worse. Anyway I struggled on that day a Sunday so much in the end I had to say to my husband Mike thats it I cant walk anymore can you take me home. He was shocked as I loved car boots they were my life and joy to leave for him was almost unthinkable that the request would be made, so he knew there was a problem for me. I got home and went straight to bed and stayed there, I didnt even make our roast dinner I was suddenly so tired.

The next morning a work morning being Monday I woke up and nudged my hubby, “I cant get up hun my legs wont work properly. They were like boards, stiff painful it was horrible i could barely feel my left leg or foot. I tried not to panic. I didnt want to take a bath after the times I had struggled to get out of one no thanks, so with mikes help we managed to get me out of bed and sort of walking. He rang the doctors surgery and got an appointment for me to see my doctor that morning. (I didnt want a bath as I had awful issues with the heat before I cover it here: https://livingdailywithmultiplesclerosis.com/2018/05/07/activities-of-daily-living-bathing/

He took me to the doctors and she did a full neurological evaluation and said it was a neurological issue and got me an appointment to see an neurologist. I cant remember when it was to be but I know it was at least six months away. I wanted to get back to work so we agreed to see the neurologist privately which was much quicker a week actually. The neuroloigist was lovely and I am still with him after all these years. On my first visit after doing lots of things to me he agreed it was neurological and I was put forward for lots of tests and my journey started.

Sounds all so simple doesn’t it? Waiting and waiting for MRI (I paid for my first one), waiting for results, waiting waiting waiting became the norm for me.

SIX YEARS WAITING

I was truly desperate to go back to work I missed it so much, so again we decided I should see an environmental expert who also dealt with Lyme’s and M.S. Dr Munro at Breakspear Medical group in Hemel Hempstead. That was way back in June 2012 so about six years after my first major attack. I had more in between. My husband and I had wondered if it could be Lyme’s because we spent hours on a lake where deer and sheep were gathered which is prime Lyme’s country, and the fact my first episode of blindness could have been an attack whilst we were in Brazil. We did walk around a lot of bushy tick places and might not have noticed, so it was worth looking at the possibility.

I didn’t care what it was I just wanted to get well. After extensive neurological testing which left me exhausted, and then about 25 vials of blood taking, Dr Munro gave me a differential diagnosis of MS with a possible co infection of Lyme’s. All this would be reviewed after the tests results came back.

More waiting.

The test results came back in august 2012 which were of course inconclusive but did show up some very interesting things.

Epstein-Barr Virus screen results suggestive of a past latent infection but showing at 98 when it should have been showing <5

Cytomegalovirus 113.1. <6 is considered non – reactive
>=6 is considered reactive and mine was at 113.1.
These are the rest of the results. It was also found that my results showed I had met Lymes but I didnt have enough results to warrant a diagnosis but it did show reactive to a co-infection.

So why were my results so high for latent viruses? I have since read that the research is pointing to a virus like EPV being a trigger for MS. Well I had it that is for sure, although i have no idea when.

If you read the link https://www.mstrust.org.uk/a-z/epstein-barr-virus People with EBV antibodies in their blood (showing a previous EBV infection) have a 5.5 times greater risk of MS than those without. So why were my results so high for latent viruses? A normal result would be <5 so would my result of >98 actually mean I have way more chance of getting it?

Going back to waiting and doctors all my results were sent to my own GP who did nothing with the results whatsoever. Even when it was found I had diseases like virus, and also Aspergillus Fumigatus, and toxic levels in my blood. Elevated levels of Perchloroethylene, Diflurobenzamide, CH-3-B-Naphthalene. I mean NOTHING was done about this. Also I had Positive Rheumatoid Factor both Latex and RAPA both positive. NOTHING happened.

What worries me is how did I become exposed to these dangerous chemicals in the first place? Is the issue at the moment with so many people sick down to exposure hidden and people not realising they have been exposed to chemicals which could harm them?

It is a worry but my GP was totally oblivious to any of it.

Maybe we should all have blood tests to screen us for chemicals of viruses, something should be done I think as there are just way too may people sick at the moment. I am just one person out of millions and when you look at my results its shocking isnt it. I am amazed I am still standing or was still standing even Dr Munroe said that.

The medics need to stop this apathy with patients. Non of whom wish to be ill they want to have productive lives. Its really false accounting isnt it as the amount of times a person has to go back to the GP because they are still unwell must be costing the system a lot of money.

Maybe its time all those people are so sick with no diagnosis should band together and insist on proper testing and conclusions rather then just being fobbed off as bloody nuisances.

It took me from 2000 to 2016 to finally get diagnosed with Primary Progressive MS. I went from possible MS to it being Progressive MS, not bad is it. So it is really all too late for me now. Even with a new drug which is better taken at the start of someones Journey.

BE YOUR OWN ADVOCATE…..=FIGHT to be heard, fight to be listened too, your not stupid, nor are you pretending, insist on being taken seriously.

I did and I got there in the end. Don’t just be fobbed off with medications that can give you even more issues or make you into a reliant junkie through stealth.

The majority of us are sick we didnt ask to be and we would like to be taken seriously the amount of human suffering going on now is massive its awful, and from a simple thing which could be resolved they end up in a much worse state, just because you looked at them and decided they were a waste of time and just anxious, or malingering drains on society.

Doctors have to work hard to get where they are and there are a lot of good ones about its the system that is flawed, as it is just so over used everyone is tired, exhausted but the main reason is because there are so many people out there still sick with no end to their own suffering or being given just a glimmer of hope that they will be diagnosed and hopefully the right treatment will be given and they will get well again, after all isnt that all we want to do, just try and get well again so we can become a better and more productive human being.