I have been sick for just over two years now. I have an auto-immune disease and I’m pretty sure it’s made worse because of my leaky gut and my weight.

I have decided that by dealing with my weight and thinking about what I put inside my body is the path I must take to start healing.

Leaky Gut

I have a poorly gut. I’m no doctor but I am convinced it’s either the cause of my issues or it exacerbates them. Before I got sick I was having a lot of problems with bloating, stomach pain, constipation etc. I even had a CT scan which showed that I had a lot more gas inside me than was normal, it was leaking into my womb. I was going to seek further help but then I ended up in hospital. I know the problem is still there, but I’ve decided I am the one who can tackle it.

What is a leaky gut? The medical term is ‘Intestinal permeability’ and it’s when the lining of the small intestine becomes damaged causing the things it contains to leak through into the blood stream. This can cause an autoimmunse response.

Symptoms of a leaky gut include migraines, irritable bowel, eczema, chronic fatigue, food allergies and even rheumatoid arthritis.

It sounds like a pretty serious condition but it’s not mentioned often. In fact a lot of medical professionals don’t believe it exists.

A leaky gut can be caused by food and/or medication. A particular culprit is over-the-counter pain relief that contains aspirin.

Repairing a Leaky Gut and Healing from the Inside

The obvious way to repair a leaky gut is to think about what you are putting in your body and improve your diet.

Paleo

Last year, after I’d put on a lot of extra weight during steroid treatment, I decided to try a Paleo Diet.

What does the Paleo diet involve?

You should avoid, grains, rice, beans and pulses, dairy products, processed foods, sugar, artificial sweeteners, soft drinks, ready meals, refined vegetable oils, chocolate and sweets, refined table salt.

You can have, meat,  fish, seafood, vegetables, nuts, seeds, fresh fruit, olive oil, coconut oil, nut oil, honey, coconut sugar, nut and seed milks, and even coffee and alcohol in moderation.

It’s not that bad is it?

I lasted a few months but it became a little too difficult. I liked my bread and rice too much. I have taken a few things from the diet though. My dairy intake is very limited, I’m a big fan of almond milk. I have cut down considerably on sugar, I do have sweet treats, but not regularly. I no longer eat pasta, but I wasn’t so keen on it anyway. I have never been a fan of processed foods so I although I have them, I don’t indulge often. I also try to eat gluten free whenever I can. I’ve never used table salt although I do add salt, usually rock salt, while cooking.

a healthy meal of fruit and juice

Time to Lose weight

Although I lost a little bit of weight last year, eleven pound to be precise, my body mass index (BMI) is still 30. I am still suffering from bloating and constipation, so I know my gut is still leaking. I’ve decided that it’s time to lose weight and I think I’ve found something that works for me.

Herbalife

I met Charlie in hospital while we were both having infusions. He has MS and is a true warrior. He was diagnosed 10 years ago and was in wheelchair. With a lot of work he know walks and drives and is living his life as well as he can. To get this far he has tried everything, and has worked out a combination of things which have increased his mobility and given him his life back.

One of the things that Charlie is enthusiastic about is Herbalife. We had a chat and I decided to try some. I chose the vanilla shake and substitute one of my meals in father of a shake with added fruit. Each shake contains a good amount of vitamins and minerals. I’ve recently suffered from a lack of vitamin D, vit. C and Vit. B12. I’ve also taken supplements of magnesium which help with my leg cramps. a Herbalife shake contains all  of these and more so I no longer need to take any supplements.

Since staring Herbalife I have felt a little better and I have lost 7lb. I’m convinced that the shake is helping and I’ve just ordered my second tub.

Mindful Chef

I have also decided to eat more healthily and instead of having the hassle of researching meals and getting in what I need, as well as all the shopping I need for the rest of the family, I have decided to try a food box. With health in mind I went for Mindful Chef. These boxes are delivered with everything you need and all the food is reduced in sugar and refined carbs. You can choose whatever meals you want and when you want it. I have two meals, which are for two people, so I split them up and make myself four meals. It works for me and in combination with my herbalife shake for lunch and a healthy (gluten free) breakfast, I am hoping for some good results.

If you would like to try Mindful Chef you can get £20 off your first box by giving my e-mail address when you sign up. (okesanne@gmail.com)

a plate of food, sweet potato chips, haddock and a small salad of tomato and lambs lettuce

Fish and chips, Mindful Chef style

My Goal

First and foremost I want to heal my leaky gut, and I also want to lose weight. I am hoping to lose the two stone I put on since being sick. As I can’t exercise much I need to rely on what I eat. I hope that once the weather gets a little better I can go for some outdoor exercise with my walker. I can’t go very far, but hopefully I’ll be able to build up to do a little more.

 

Have you heard of a leaky gut?

What do you do to keep healthy?

 

Where it all began

When I was in hospital two years ago I became a medical guinea pig. Most of the time I didn’t mind, it was a teaching hospital and the young doctors needed to learn. I was a rare case and difficult to diagnose.

When I first arrived at the hospital the first words uttered by a doctor were Multiple Sclerosis. My symptoms were very similar to MS but the doctor made a classic mistake of looking for horses when in fact I was a zebra. It’s a strange medical term but basically it means that most doctors will go for the obvious diagnosis (horses) which are more common, but some cases are not so obvious (zebras) and more rare. My condition is very rare, one in a million worldwide!

At the time, after days and days of testing, podding a poking to an extreme extent, my diagnosis was Transverse Mylelitis, another rare condition. This was later changed after more podding and poking and blood tests to Stiff Person Syndrome with PERM, but more about that later.

An MRI Scan had ruled out MS as I had no problem with my brain (although some may disagree with that but they are not doctors.) A Lumber Puncture had ruled out further, more obvious conditions. I had my legs pricked with little pins so many times that I looked like a pin cushion. The defining test had been the planter reflex, or in laymans terms, the tickling of my feet. When an object, usually a pen but they did have ‘proper’ tools for this, was brushed up the soles of my feet I didn’t feel a thing, but my toes shot upwards. This, my friends, is not normal. I had no control over my little tootsies, and still don’t but tickle my feet and they’ll shoot up. This is called the Babinski sign and is supposed to indicate a problem with the spine and that’s where my diagnosis of Transverse Myelitis came from and it means inflammation of the spinal cord. There is also a test on the hand, the Hoffman Sign, which is indicated by an involuntary flex of the thumb or forefinger when your middle finger is flicked. Oh, it’s all very technical you see.

Back to the student doctors. They were there every day and most times I agreed to let them take a pod and poke of my poor lifeless legs. Some days I was not so willing and I’d tell them to piss off. Well, I’m sorry, but when you are ill you just don’t care. On one particular day I had ten, yes TEN, students around my bed, with the curtains drawn it felt very claustrophobic. My consultant had visited me beforehand and asked me to stay quiet unless I was asked any questions. I think he had become a little fed up of my saying, no, you don’t do it like that, or try doing this, because I believed I’d become quite an expert in all the tests. Well, you would do if they were performed on you several times a day for a fortnight. Not only that but as soon as a doctor had performed a test and left I’d be on google finding out why. That’s how come I know about the Babinski and Hoffman signs.

So, I’m lying there like a good little guinea pig while these students do their tests and basically they haven’t got a clue what they are doing…but I did as promised and stayed quiet. I tried to concentrate on things like how smooth my legs looked considering they hadn’t been shaved for two weeks. I put up with having my legs lifted and dropped, I think this was fun for them because they all seemed keen to have a go, and they pricked me with pins, tested my reflexes (they got the Hoffman’s completely wrong) and pinched me after asking me to shut my eyes, oh they were mean! Then the consultant asked them what they thought was wrong with me and pointed to them one by one for their diagnosis. The first guy said Transverse Myelitis, but the second say Guillain Barre, after that the rest of them said Guillain Barre, talk about a pack of sheep. I so wanted to congratulate the first guy but I stayed quiet.

I stopped allowing students after that, there is only so much you can take and I’d had enough. Plus, I was starting to feel better, it’s one thing being poked, prodded, pricked and pinched while you are immobile and numb, but once I was feeling more I just couldn’t take it.

I left hospital with my Transverse Myelitis diagnosis and the assurance that I would be recovered in a couple of months, if not, then six months at most.

The New Diagnosis

So when I went back to my consultant eight months later with no recovery at all then I was sent for more tests. I had more blood tests then a EMG and NCS.
The EMG, or Electromyography, involves long needles pushed into the muscles to record any evidence of abnormal activity. Some people hate this procedure, but I didn’t feel a thing. Then came the NCS or Nerve Conduction Study, this is where they electrically stimulate the nerves to see if they react correctly. Again, I didn’t feel anything in my legs but apparently they behaved appropriately. Then they did my arms and boy did I feel that, it was just like having electric shocks…don’t touch a plug with wet hands! But, I was distracted from the pain as each shock made my fingers move like a robot, it was really fascinating.

Once all the results where collated my consultant decided that I had a form of Stiff Person Syndrome, Progressive Encephamyelitis with Rigidity and Myoclonus. I’m still not hundred percent sure that he’s right, I talk to other people with the condition and I can’t relate entirely with them…but then they don’t relate to each other, it seems each one of us is different but we are all diagnosed by anti bodies found in our blood. I guess if the condition was not so rare then there would be more similarities between patients, who knows?

Back to the Present

Since my diagnosis of Stiff Person Syndrome I have been trying out treatments that could make a difference. First I was given a big dose of steriods, intravenously for a week then in tablet form. The only thing they did was make me blow up like a balloon. So my consultant put me forward for IVIG, (Intravenous Immunoglobulin) which I’ve been having for nine months now. The first couple I only had a minor improvement but the third one was much better. I think mostly because I stopped expecting a miracle and settled for improvement instead. I have a LOT of symptoms which I won’t bore you with now (well done if you’ve got this far!) I have to be grateful for the lessening of any of these symptoms and the IVIG does help. It just doesn’t make me walk again and that is my biggest wish, my dream. I won’t give up on it, ever. I know my condition is progressive, but I’m not going to give in just yet.

Rare Disease Day 2018

28th February is Rare Disease Day, when those of us with rare medical conditions shout out loud, look at us, we are ill too. Find us a cure!

I’m one in a million. I’m a medical zebra!

I wish I was a horse!

a zebra in a field of horses

 

School Runs and Shopping Trolleys
Naptime Natter

a frosty twig with the quote, if you fell down yesterday, stand up today by H.G. Wells
photo courtesy of Les Anderson
If you read my post last week, Let Me Not Beg for the Stilling of my Pain, then you would have probably noticed that I was not as upbeat as I usually am. I try my hardest to be positive but sometimes, even while trying, I feel pretty bad inside.
I was really ill, I’d been ill for weeks and I really thought it was time to just give up. But giving up is not really in my vocabulary.
Last week I spent every day in hospital as an outpatient. I received my IVIG treatment for the third time. The first time I’d had very little result, the second time I’d had some good signs but the side effects nearly killed me. This time I was scared about the side effects and had little faith in the treatment. I also harbour guilt for taking such an expensive medication when it was not doing me any good, but talking to other patients they all said I needed to keep going as it does get better.
So, last Monday I had fallen. I had fallen hard and didn’t have much hope in getting back up again.
But, I did. I had my treatment, I have had very minimal side effects, and I feel much better!
Okay, it’s not been a miracle cure, but I have less pain (I have to say that again, I have less pain!!) and I have a little more energy. I feel better inside and my positivity has returned. I’m standing up again. (Almost literally but only for short periods,) and it feels good. I have already been booked in for my next two treatments but I will see my consultant before then. Depending on how long I feel better for he may change my treatment dates.
I have a lot to look forward to this year, and although it started pretty rough, I now have lots of hope that things are going to be just fine.
,

 

School Runs and Shopping Trolleys
Debs Random Writings
Naptime Natter



I’ve just finished reading One In a Million by Jaqui Atkinson

I read it in two days, it was really difficult to put down.

Here is the ‘blurb’

Imagine all of your muscles going into spasm, and being unable to move a single part of your body. Imagine being in excruciating pain. Then imagine how it feels when the doctors tell you they don’t know what’s wrong. And they don’t even believe you… It took six years before Jacqui Atkinson was diagnosed with Stiff Person Syndrome, a very rare neurological disorder which affects just one in a million people. This is a remarkable story of courage, of faith, and most of all a story of love. This is Jacqui’s story. She is one in a million.

 

I too am One in a Million.

I’m not as bad as Jacqui, she has a very bad case of Jerking Stiff Person Syndrome with PERM.
I do have PERM though so I know that my condition will get worse.


PERM – progressive encephamyelitis with rigidity and myeclonus


It was fascinating reading someone else’s story, scary at times, emotional at others. In the end though I felt uplifted. This lovely woman has been through so much but still holds on to life and appreciates every day. She also has a very loving and caring family, despite their own difficulties at times.

I can relate to a lot, I too have painful spasms, but mostly in my legs and lower back. Only recently have I been getting them in my arms hands and upper torso.

I can relate to her ability to sit with her feet straight out. She holds a competition with her doctor and her husband to see how long they can hold their legs up and feet in the air while sitting on a chair. Try it yourself, see how long  you can do it for. When my legs spasm I can do this for up to half an hour.

woman in chair with legs stretched out straight

I think Jacqui’s book explains a lot about Stiff Person Syndrome, how difficult it is to get a diagnosis, how people don’t believe you about the pain, how people don’t understand why you can’t move, how people think you are ‘putting it on.” I think I was lucky, although I did look back in my diary and find a page where I was obviously very upset after visiting my GP as I’d been experiencing pain for quite a while and he didn’t believe me. In fact he referred me to a mental health centre. Yes, he thought it was all in my head. However, when I went into hospital and had a paralysing attack right in front of them they did give me thorough testing and keep me in for a couple of weeks until I could walk a little again. I was given a diagnosis of Transverse Myelitis which actually fitted what I was experiencing. It was a year later and after further testing (EMG, NCS and bloods) that I was diagnosed with Stiff Person Syndrome. Most people have to wait a lot longer for a diagnosis.

I related so much to Jacqui’s first story of how she felt when she came home from hospital the first time. It’s such an emotional period which people don’t really understand.

Jacqui has been through a whole range of treatment and finally, after 15 years, she is living her life much better with pain management that suits her and keeps her most severe attacks from happening so frequently. It was really interesting for me to read about the treatments and their affects on her. I know I will face many of these treatments myself at some time. If the money is available and my consultant is understanding. I really hope I can find a treatment that improves my quality of life sooner rather than later. I know there is no cure but I long for days that are free of pain and my being able to walk again, even if it is only between treatments.

I managed to get through to my consultants secretary this week with the help of the hospital’s patient liaison team. I got my appointment brought forward by a month, so now I only have a month to wait rather than two. Thanks to reading Jacqui’s book I have some questions to ask about treatments. I really want to try IVIG again, but it didn’t really make that much improvement apart from give me a little more energy and releasing a little of the stiffness. I do think that with more treatments I might get more relief from my condition, but I’ve accepted that it’s not the miracle I was hoping for before I had my first treatment. I know that’s the reason I got so low afterwards, I’d built myself up thinking that I’d be able to walk again afterwards but it didn’t happen.

Now, I will face whatever there is to come. There are some fantastic treatments out there, I just need to find the one that suits me best.

If you would like to know more about Stiff Person Syndrome then please visit The Tin Man.

Or please take a look at Jacqui’s book on Amazon.

 

Mummy Times Two
School Runs and Shopping Trolleys

As you may know if you’ve read my blog before I am a disabled mother. I was diagnosed with Transverse Myelitis on Jan 1st 2016 but my consultant changed that diagnosis just a year later after some tests showed that I have Stiff Person Syndrome. I wanted to record the start of my journey here on my blog, mainly for myself, but also so I can let people know why I am the way I am. This post is very detailed and probably not much interest to anyone else, so please forgive my self indulgence. If, however, you would like to know more about what is wrong with me then please read ahead.

Diagnois:

To make the diagnosis my neuro consultant took blood tests and I had an Electomyography and Nerve Conduction Study last September. A Stiff Person Syndrome diagnosis is usually proved when a certain anti body known as Anti-GAD (not to be confused with Aunty Gladys which I’m sure many of us have) is present. Well, I don’t have it! So I thought I was in the clear. However, it turns out that I have another little critter of an Anti-Body doing the rounds known as a Glycine Receptor and this can be a culprit for Stiff Person Syndrome. Also, the electrical needles I was poked with added to the results. I have a sneaky feeling that this is  not the end of the diagnosis period. The consultant mentioned something called Progressive Encaphalomyletis with Rigidity and Myoclonus, PERM for short (now that brings back memories!)  It’s not officially written in my notes yet though.

How am I affected?

Well the consultants main concern was my rigidity. I already have several muscles in permanent seizure, i.e. completely stiff. It starts from my lower back and moves down to my upper thighs. My lower leg muscles are also pretty stiff and so are my feet, but not quite as rigid. This makes it difficult for me to walk and when I do walk it’s with, what is called, a spastic gait.
I also have periods where my muscles spasm in and out of rigidity and this is more painful. It’s like muscle contractions that I cannot control, they can last anything from second to minutes to an hour. Thankfully, at the moment, it’s generally shorter rather than longer periods. These happen anywhere from my ribs to my toes.
Then there is the myoclonus which is a rather fancy name for jerks! They happen frequently but not constantly. I mean, I’m not lying around jerking like a fish out of water, but I do jerk quite a lot intermittently throughout the day. I’ve noticed they happen more frequently when I am more uncomfortable, like in my wheelchair for a long time, or if I need the toilet.

What Has Happened to Me?

I’ve become one in a million! Well, actually, the figures are not even known it’s so rare but yes it’s less than one in a million worldwide. No-one really has the answer to why it happens and I had enough tests under my last diagnosis to know it was not caused by any nasty little disease or germ. They even took a sample of my spinal fluid to test, that was fun! Well, actually it wasn’t too bad because they did it at a time when I was paralysed anyway and I didn’t feel much at all. Then afterwards I had to lie on my back for at least two hours to prevent a headache…well, eh, paralysed! I didn’t move for another 12 hours at least afterwards, no headache, yay for small mercies.Just like TM I had some kind of inflammation on my spinal cord which has affected the myelin coating and in turn made my central nervous system go wonky. Now I know that it was the naughty little glycine receptors that started the battle by triggering my own body to attack itself. Hence, it’s also considered to be an auto-immune condition. But like I say, not a lot is really known about it.

What Can I Expect?

Again, not an easy one to answer. Some people suffer mildly for many years, some progress at an alarming rate, some die within one to three years (But lets not focus on that!)
I may get better if the right treatment is found and works on me. But, the truth is, this is a progressive condition so it’s certain that I will get worse at some point. Some sufferers have had remission after treatment and have been able to get back to a relatively normal life. Some have just become worse. I have no idea which one I will be but I do have faith in my consultant who is now prepared to work through the treatments available with me. 

Pain

Pain is one of the big issues. Neuropathic pain is difficult to treat despite there being treatments available, people do not seem to have much success in being pain free.
I have pins and needles. That’s the simplest way to describe it, but it’s much more. Everyone gets pins and needles, they are uncomfortable. If you’ve been sitting in a certain way too long you may find that you get pins and needles in your foot or leg. You get up, you walk around, you may even shake it a little or massage it. Then it goes away. Mine doesn’t go away, not ever. It’s not just the general tingling either, it’s the really, really strong one that makes you hop on one foot because it hurts to put your affected foot down. I have to live with that daily. At first I didn’t want to put my feet down, it was like walking across a hot shingle beach bare foot. After a while I got used to it, and now I just do it whenever I can, but it’s never for very long.
I have the pins and needles in my feet, legs and my hands. They are much milder in my hands though, thank goodness. They bother me most when I’m in bed and trying to sleep. It’s so hard when you are just throbbing everywhere.
I also get spasms where my muscles go into deep contraction. It’s generally in waves and really hurts. It’s not permanent though and at the moment I can bare it, just about. The worst, I think, are night spasms. I will wake up and my entire lower body is in spasm, everything is contracted and tight and I feel like I want to escape from my skin. This can last from a few seconds to several minutes. My body will contort in spasm and I feel like I cannot move any part of me. The scary thing is, these spasms are moving up my body and lately I’ve been getting more around my ribs and chest area. These are scary because it feels like I’m being crushed. I have to do my best to keep calm when this happens as stressing out can make it even worse.
I get back ache on a daily basis, it comes on if I sit too long, or even if I stand too long. It’s often there when I wake up. Thankfully, my painkillers do help my back pain.
I get a burning sensation down the back of my legs and in my feet. This happens when I’ve been standing too long, probably while cooking or washing up. I have a stool to sit on while I do things in the kitchen and I have to use it when this pain comes.

Treatment

I will be on treatment for the rest of my life. I will need to keep taking medication to prevent this illness from taking over my body completely. There is no cure, so slowing it down is the only option.
I’m currently on high dose steroids. I had five days of intravenous steroids in hospital. This meant they could give me a high dose with less risk of ulcers appearing in my stomach. Now, I’m on pills which I will be taking for four months and slowly weaned off.
I take drugs for the neuropathic pain which must help a little because I feel dreadful if I miss a dose. Sadly they don’t work too well though and I may have to increase my dosage.
I also take drugs to help the pain so I can sleep, I take anti-acids to counteract the side effects of the steroids and Calcium to increase my bone strength.After the steroids, if I’m no better, or I get worse again, the next step would most likely be IV Immuniglobin. This is a mixture of anti bodies derived from human blood donations. I will be hooked up the drip again but for a few hours longer.

Another treatment is Diazapam, a sedative used for anxiety, but it is also good for relaxing muscles. I think I may already be too far gone for this drug, but it may be used in the future.

Other treatments involve chemotherapy and Plasma Exchange, but these will hopefully far in the future if I need them.

Prognosis.

My prognosis is not really known because this condition is so rare. I could start walking and moving like before. I could find something that actually works against my pain. I may be able to lead a normal life at least for a while.
Or, I could just get worse. I could lose more of my muscles to rigidity and have more frequent spasms. I may have spasms so strong that they break my bones. I may start having spasms in internal organs which will cause further issues. It could progress quickly and even take my life.
I will stick to the positive side and pray that I can have some kind of life with my children and be able to enjoy things.
I will never be cured from Stiff Person Syndrome and it is progressive, so I will get worse at some point. On the other hand, I could have my diagnosis changed again to something different.

Feelings:

It’s all been very difficult to come to terms with. I went from having hope of some kind of recovery to knowing that things can only get worse. I still harbour some hope of recovery, the thought of living out the rest of my life like is this really depressing me.
I’m not afraid of dying but I am afraid of how my family will cope without me and I’ve already started getting as much as I can into order to make things easier for them.
I’m terrified of not getting to see my kids grow up.
I’m terrified of not getting any better and my kids having to watch me get worse.
I really don’t want to become a burden on my family. 

 I’m generally a positive person, always looking for the good. It’s been difficult lately but I know I need to get that positivity back  and soon. I need to enjoy what I can while I can and I’m currently working on a list of things to do that will create happy memories for the darker days. 

List of medication

Here is  a list of my current medication just in case anyone is interested.60 mg daily of prednisolone
1200 mg Gabapentin
20 mg Baclofen
20 mg Amitryptiline
20 mg Lansoprazole
2 chewable calcium tablets with VitD

For extra pain relief when required;
Naproxen
co-drydamol
paracetamol
ibuprofen
(n.b. I choose which of these I require, I don’t take them all at once)