14th November 2017

I have been experiencing some strange symptoms including- night sweats- (nice way to start a conversation) Tiredness- extreme tiredness, forgetfulness- extreme forgetfulness! I was tested for over active thyroid and the Doctor said if it came back clear we would then test for menopause.  When it came back clear I decided not to go back, if menopause is coming, it’s coming- I wasn’t going to go look for it.   A few months later I went to a gut health talk in Soulbia.  The dietician Kirsten Crothers was talking about Coeliac disease and she listed all of my symptoms, including one I had forgotten to mention to the Doctor- pins and needles in my hands and feet and face and somewhere else- private! So off I went to the Doctor and told him about my pins and needles.  Pins and needles in my face and feet and hands and vagina (I said the word vagina to my doctor- cringe)  then about the gut health talk- he looked at me and said, ‘it is not coeliac, coeliac doesn’t present itself that way’ so he asked me to stand up and walk in a straight line- which I did but not very well- I almost fell over- then he asked me to follow his finger with my eyes- which I did- I don’t know if I did that well or not.  So he said, ‘I’m going to refer you to a neurologist to eliminate MS’ ‘WHAT? MS- is this because of my vagina? ( I said vagina again, what is wrong with me)  ‘no, it’s coeliac, can you test for coeliac?’  He was very obliging and took blood to check for coeliac and said ‘no, it isn’t just about your vagina (now he said vagina- Oh God) it is the pins and needles in your extremities…’ but he had lost me.   MS was all I could think about as he spoke to me, telling me, I’m still going to be the same person walking out of his office as I was walking in… I think he was trying to help but he sounded very serious- almost like I had MS.  My eyes started to sting.  I ask him what are the waiting lists like and he said, not great, then I remembered I may have health insurance through my husbands job.  He tells me to find out and get back to him.  I manage a  ‘Thank you Doctor’ and I leave.  I feel sick.  My sister-in-law has MS.  It is not nice.  That is putting it mildly.  I walk to the car and see a text from my husband.  ‘How did you get on at the doctor?’ ‘He’s testing for MS. need health insurance details’ ‘ok. Stay positive. Are you okay? it’s just precaution’  I start the car and remember my mum is with the girls, what will I tell her. I can’t mention MS. I decide that is she asks I ‘ll say I’m being tested for coeliac- which is true.  I want to cry. My girls, my babies.  I don’t want to have MS.  It is not fair on them.  They don’t deserve a mother who has MS.  I get home and luckily my mum doesn’t ask anything and makes a swift exit- the girls must have worn out.  Seeing the girls my head spins a little.  I love them so much.  I am so grateful for them.  I need to get better for them and I need to make sure they are never ill.  I am going to be positive.  We have the book ‘the china study’  I go to the chapter on autoimmune and that’s it.  I’m going vegan- the girls are going vegan, my husband is going vegan. Milk is bad.  No more milk.  I’m feeling good.. If I have MS I am going to cure myself of it.  It is going to work.. Everything is okay- actually I’m kinda buzzing.  Maybe it’s adrenalin.  I play with the girls and appreciate every second of it.  Then my husband comes home and kills my buzz.  He is very sullen looking.  I can’t deal with his worry.  I don’t want people to worry.  I wish he would go back to work and on to University like he is supposed to but he has decided to take the rest of the day off.  He asks me what the Doctor said and my voice cracks- (WHY?? I’m positive- it’s all good- why is my voice letting me down) I haven’t said it out loud yet.  I’ve just text it- so it’s still not real.  I don’t want to say it and put it out into the universe- making it more real somehow.  It’s like using a debit card over cash.  I never feel as bad using my debit card because I can’t see the money disappear but when I hand over cash- it hurts!!  So here I am.  About to make a transaction I don’t know if I have the goods to back it up!  ‘I don’t want to talk about it right now’ but he persists so I give him a little bit of details and suddenly everything gets so serious again.   I ring the Doctor’s office to get the name of the neurologist to make an appointment.  They tell me to ring back later and they’ll have it.   What if it’s not MS, what if MS is the BEST case scenario- not the worst case scenario.  Fear is taking over.  I must divert it.  I tell my husband milk is bad- no more milk. He rolls his eyes.   I go online and search.  I find Dr Wahls.  She cured herself of MS through her diet.  I order both her books.  I go in and play with the girls again.  They are mad craic.  The make my heart happy.  With them I can do anything.  Everything is going to be okay.  That night I lie in bed.  ‘I don’t even have MS’ ‘If I have MS I am going to beat MS, I can cope’ I can’t cope, I don’t want MS’ ‘What if it’s not MS,  what if it’s something worse’  ‘I don’t even have MS’  ‘If I have MS I am going to beat it, I can TOTALLY cope with this’ ‘what if it’s not MS’…..

Functional Neurological Disorder FND

  • FND is due to a problem with the functioning of the nervous system and thought to be the result of the brain’s inability to send and receive signals properly, rather than disease.
  • FND is the second most common reason for a neurological outpatient visit after headache/migraine.
  • FND is more common than multiple sclerosis.
  • FND symptoms are real
  • FND can cause impairment in quality of life that is similar to other neurological conditions such as Parkinson’s disease or Epilepsy

Taken from FNDHope.org

I have been trying to get my head around FND and honestly- I can’t.  Is it a mental health problem?  Is this my anxiety and worry manifesting itself physically?  I have no idea.

I am assuming it is all to do with my anxiety.  I think of myself as a positive person- I try to get people to  look on the ‘bright side’, I try to cheer people up and keep them positive.  But in my head I am in a constant state of worry- about everything.  For example- My parents are over in England at the minute visiting my brother.  They took the boat and then drove to his house.  I was on high alert until I heard they arrived safely- I had imagined many scenario’s that did not end well for them.  The weather was bad so maybe they came off the road, maybe a lorry driver fell asleep on the motorway while driving and crashed into them, maybe they fell asleep at the wheel, maybe a lorry had a blowout- the list is endless. As the day went on, I kept checking the time and getting more stressed, I eventually asked had they arrived safe- thankfully they had- but no-one told me!  They were all relaxed having a great time whereas I was freaking out and wondering how to cover funeral costs!

I guess that ‘energy’ has to go somewhere.

I don’t send apples to the childminder for my children in case they choke on them.  Then I found out she gives them apples anyway so I go to work and worry that the apple will get them!!

I’m driving and I worry, I lie in bed, I worry, I try relax in the bath and I worry.  My imagination runs away with me.

Yesterday the girls and I were in the car and we were having THE best time, singing Let it go(Alex’s choice) and Mika(Eabha’s choice) the same 2 songs over and over, we were all singing (using that word loosely) at the top of voices- then I thought- well if the apocalypse comes now at least we are together.   That was my ‘Happy’ thought.

This ‘anxiety’ must now be causing these ‘mysterious’ symptoms.   Looking on http://www.FNDHope.org  it seems anti-depressants are often prescribed (So it is a mental health thing?) I don’t want to be put on an anti-depressant.  So I gotta fix this myself.

How?

It is unlikely I have MS

I know the saying ‘no rain, no flowers’ means without rain there can not be any flowers but today I feel like I didn’t get either. I didn’t get flowers or rain, I got nothing. My long-awaited neurologist appointment was today and he said that it is unlikely I have MS. He said he didn’t think there was any need for an MRI if I was happy enough to trust him, which I am, because he’s a neurologist! He said my nervous system isn’t working correctly but it isn’t a neurological problem. He did refer me to a website: http://www.neurosymptoms.org which is very interesting but A LOT to take in- here is the introduction to it:

Functional and Dissociative Neurological Symptoms : a patient’s guide

How to use this website …

This website is about symptoms which are: • neurological (such as weakness, numbness or blackouts) • REAL (and not imagined) • and due to a PROBLEM with the FUNCTIONING of the nervous system, and NOT due to neurological disease. These symptoms have many names (including dissociative symptoms and conversion symptoms) but are often described as “functional symptoms” or “functional disorders” Symptoms like these are surprisingly common but can be difficult for patients and health professionals to understand. This website, written by a neurologist with a special interest in these problems, aims to give you a better understanding of these symptoms. It has no advertising and does not make any money for the author.

Obviously I am relieved I don’t have MS or any neurological problems but I am also deflated in that I was looking forward to having some answers- some validation even on my symptoms, now I feel like maybe I am just crazy- which is not a nice feeling. A ‘crazy attention seeking time waster’ is how I feel right now. I am trying to be positive- I DON’T HAVE MS! how can I not be HAPPY? – I know everyone with MS most likely wishes they didn’t have MS so I am grateful, for my babies, I am so glad. Now I just have to look deeper into myself and see how to fix these annoying symptoms. I need to get a grip of my anxiety as the Dr said it could be a factor. How do I do that??

I need an action plan.

My action plan is:

Complete 80 day obsession (A Beachbody program)

Meditate 3 times a week

Bath in magnesium at least once a week

Keep a diary about food, stress, symptoms.

Continue Gluten free, Dairy free and Sugar Free and lean more towards vegetarianism (now that I don’t have MS I don’t need to follow the Wahls protocol so strictly and you can’t be vegetarian on that)

Continue with my supplements and investing in some CBD oil- to help with my sleep.

I also need to work out a timetable and try to stick to it as much as possible because I need trained. I need a schedule. My head needs some clarity and structure to guide me through the fog.

I still plan on writing this blog as it is about my journey to health and becoming soul strong. I didn’t get any answers today but I will keep searching.

JUST STRONG

I wish I had someone to talk to through all of this. I don’t mean that in a melancholic way. I think I just need another me so I can get out of my own head sometimes but stay in my own head!! I really want to thrash out everything that is going through my head and hear some objective opinions. No one really wants to talk about it. Everyone is so sure (but not sure) that I don’t have MS they make me feel ridiculous, like I am imagining everything. My friends don’t ask questions and they change the subject if I try to bring it up. My husband does listen but he honestly has enough to worry about with work and his masters and being a dad and being a husband. I still haven’t told my parents. I KNOW! I just couldn’t do it to them. I was waiting until after Christmas, then after New Years then I just couldn’t do it. But I am getting tired of living this ‘double life’, it is stressful and I don’t need anymore stress but I don’t want to hurt them. Not that I could talk to them about it because I know they would be telling me there is nothing wrong with me or treating it like it is a death sentence. My brothers don’t ask. I know everyone has their own lives and their own struggles. I suppose that is what this blog is all about. Getting it out there and trying to organise it or make sense of it, if there is any sense to be made!

One of the groups I am in on Facebook asked us what our word for 2018 was going to be and it took me a good week to come up with the perfect word. STRONG.  My word had to be STRONG.

STRONG:
ADJECTIVE
stronger (comparative adjective) · strongest (superlative adjective)
  1. having the power to move heavy weights or perform other physically demanding tasks:

    synonyms: powerful · muscular · brawny · well built · powerfully built · strapping · sturdy · hefty · burly · meaty · robust · fit · athletic · vigorous · tough · rugged · stalwart · staunch · mighty · hardy · lusty · Herculean · strong as an ox/horse/lion · beefy · hunky · husky · ripped · shredded · buff · jacked

     

I need to be every one of these synonyms! From fighting-fit to passionate to forceful to knowledgeable! I need to be STRONG.

Strong in my Physical health.

Strong in my Heart

Strong in my Gut

Strong in my Mind

Strong enough to look after everyone else and Strong enough to look after myself.

Strong enough to stand up for myself

A lot of people think I am weak, because I cry at EVERYTHING. I have been called weak many times.

I am not crying because I am weak. I am crying because I FEEL everything yet I still have the strength to go on. I am STRONG.

When I went to Mass on a Sunday as a child. I would look around and most Sundays I would see someone with so much sadness in their eyes that I would cry too. It never left me. I still see it. I still feel it. I still cry. I am strong. 2018 is my year to show everyone how STRONG I am .

Welcome to Limbo

The neurologists appointment is this MONDAY! And I have decided to expect NOTHING from this appointment. The neurologist isn’t going to say definitively ‘yes, you have MS’ ‘No, you don’t have MS- scoot!’ I will most likely be told I need an MRI and or a Lumbar Puncture and I don’t even know if I want to go down that route. Firstly I am a little claustrophobic (I was locked in a boot/trunk of a car when I was younger during a game of hide and seek and they forgot about me- I was there for hours, only released when the driver heard my crying before taking off) I had planned on asking my GP for something to help with the MRI on the day but now the more I read about MRI’s and Gadolinium poisoning the less I want something put into my brain. This is from Ashton Embry (Father of Matt Embry of MS Hope)

“Gadolinium and MS – Most neurologists routinely prescribe annual MRI scans for their MS patients which include a gadolinium-based dye. The main reason the dye is used is to identify active lesions in which blood is passing through the blood-brain barrier (BBB) into the central nervous system (CNS). One of the main motivations behind such scans is to use them to persuade (scare) their patients to use a drug or to move onto a more powerful (toxic) drug with a bigger price tag.
In the summer of 2015, I posted a warning that gadolinium can accumulate in the brain following repetitive scans and potentially cause additional problems in the CNS. Notably the US Food and Drug Agency has recently issued a report (https://www.fda.gov/Drugs/DrugSafety/ucm589213.htm) that gadolinium (Gd) does indeed accumulate in the brain after a number of scans. It is still not known what problems are caused by the retention of Gd but one has to assume a build-up of a toxic heavy metal in the brain is not a good thing.
I doubt if the neurologists will discontinue, or even substantially lessen, the use of Gd-based dyes given their great value for additional drug sales. I suggest PwMS strongly question why their neurologist is using such a potentially-harmful technique to identify disease activity when physical exams are obviously the best way to determine if progression is occurring. Furthermore, if progression is occurring, I would hope that the person would seriously look at nutritional strategies to slow or halt such progression (see MSHope.com and Terrywahls.com). I can only emphasize there is no solid evidence the drugs recommended by the neurologist affect long term progression (the real disease).”

I’ve since read lots of messages from people who have had only 2 MRI’s and Gadolinium is at a crazy high level in their brain- so no, I don’t want that. If I must have an MRI, I would like it without Gadolinium.

Then there is the whole problem with seeking out a diagnosis. It will most likely take years. If I do get diagnosed with MS, I know I will just get meds pushed at me, meds which treat the symptom not the disease. Professionals who are bank-rolled by pharmaceutical companies or who have been trained to do so (by people bank-rolled by pharmaceutical companies)- will be telling me what to take and I will doubt my own instincts because they are professionals and I am not. I do know that since I started investigating my gut health- my symptoms have appeased. Now I don’t have the numbness- everywhere- everyday. Before I started this I would have numbness in my hands and feet every single day- for hours. Now I do have the occasional tingling but nothing like it was. AND I am just beginning!! AND I’m not even doing it completely correctly, I do sneak in the odd chocolate! Imagine if I was 100% strict.

So, maybe I decide I don’t want a diagnosis (until I get a big flair up perhaps) Am I content enough to live in LIMBO- not having an answer? Hi, I’m Gail and I might have MS. Could I cope with that?

New Year

New Year, New You! The slogan that is everywhere at the minute- but you know what? You don’t need a New You! Don’t buy into it. I do need a few ‘new’ changes but that is about GROWTH, not becoming a new person. I hope to develop a few NEW habits.

My first ‘New Habit’ is to get up at 5:30am and start my life. It was supposed to happen this morning but both our girls had the most restless night EVER- The Christmas comedown for kids, so I was not fit to get up at 5:30am this morning. I didn’t fail- I just need to try again! When I do get up at 5:30am and the girls are still asleep- I intend on working out to my beachbody program and then just sitting in silence over a mug of tea. Mentally preparing myself for the day ahead. What might happen is I fall asleep on the sofa- I know for sure that this habit is not going to be an easy one for me to develop- but I’ll try. I will become a fully-fledged member of the 5:30am club. (Hold me accountable- I’ll see you at 5:30am tomorrow morning)

The second NEW habit- is to workout (which is linked to my first habit) I have also signed up to a 10k which takes place in April. I realise one of my symptoms is tiredness but I will do my best. Some days I have boundless energy (I think I had one of those days in the last year) most I days walk up the stairs and I feel drained but reading the Wahls protocol- I need to get moving! ‘Your brain and your body need you to use your muscles and move, even if you have a degenerative disease. Exercise is important to maintaining the proper balance of hormones in the brain and in the body. It also keeps muscles from atrophing’ Taken from The Wahls Protocol by Terry Wahls, M.D. I will be a Wahls Warrior which leads me to my next New Habit

My third New Habit is to STOP WORRYING- This will be the hardest for me as I am constantly worrying. Ringing in the New Year and everyone is so hopeful and in my head I’m thinking- It is too late, Our planet has doomed, What have I brought my girls into? What sort of lives will they have? Threat of war, Over Population (I added 2 to this problem) POLLUTION, Climate Change, Artificial intelligence, now there’s some Aussie Flu making its way through Ireland killing people!! So- STOP and breathe- turn away from the media and realise the media is a fear factory. I need to live in the PRESENT, enjoy my girls today, in this moment, and stop worrying. STOP WORRYING. It is all beyond my control so why worry. LIVE IN THE MOMENT. (obviously I am using less plastic and trying to help as much as I can with climate change and pollution) but everything else? I can’t worry.

2018 will see me become a WARRIOR not a worrier.