Sunday 22 April 2012

Feelings, nothing more than...

A slight change in blog direction for this post.

I had been talking a lot recently about various websites and approaches as regards drugs and diet therapy.
This post will be a little more about feelings...and for a man, isn't this supposed to represent a more fearsome approach than the slings and arrows of outrageous misfortune?

Let's see!

Some of you might know that my father died of cancer a number of years ago. It started out as bowel cancer and spread. From which point, for a few years, I was checking what I'd left behind in the toilet bowl and on the toilet paper in case there were any tell-tale signs.

It almost goes without saying (and indeed, you might wish I'd kept it that way...) that one day I spotted some blood on the toilet tissue.
Logically speaking, the colour (bright pink/red) wouldn't suggest anything cancerous at all, but when you've got into a bit of a cycle about these things (checking for symptoms), it's all too easy to force 'evidence' to fit a diagnosis.

Anyway, long story short, I got checked out and was told I had hemorrhoids. Which of course was a blessing, although the digital probing and air inflation of my lower intestical tract is a sensation I think I shall remember for the rest of my life.


So why the gruesome story?
Well, the MS is occasionally on my mind, whenever I get a leg ache, or twinge, or a new headache, or a feeling of dizziness. Recently I think I've noticed that if I sit sideways on to someone (like at a bar) and am trying to turn my head to talk to them, I get dizzy.

Am I only noticing it now, or have I always had this? Can it be attributed to the MS?
Sitting too long on one position, as you know, can result in numbness (before the pins and needles recovery starts) - and again, at times it is difficult to not immediately leap to a chronic self-diagnosis of a new symptom.

I guess this though, is all part of the 'recovery' process.
Basically speaking, I think I will need to give myself a little time to completely come to terms wiith the MS. I think it took something like a year to stop avidly checking for signs of bowel cancer - the mindset change being to sometimes check, rather than it being the thing you always ensure you do.

Like checking for testicular cancer or (for men as well as women!) checking for breast cancer.
I suppose the trick for these things is to be aware of them, rather than allowing them to almost being the principle reason for going to the bathroom.

And so it will be with the MS - I'll eventually re-learn that not all sudden twinges or feelings of numbness or headaches not based in tiredness, have anything to do with the disease.
When I reach that stage, I can then be a lot more relaxed about it, and hopefully then, no false flag alerts.

Another issue that's only really come to light in the past couple of weeks, is a sort of trust issue.
Not the usual type - I mean, nothing to do with partners and couples and so on.
Instead, it's dietary trust.

Because I am trying to control the disease through diet, it means that I am pretty following it in an 'all or nothing' approach.
This doesn't make it so easy for my wife either of course, and having to ask the breadshop if they know if any dairy products were harmed in the making of their bread must be getting quite tiresome for them, almost as much as it is for me.

Anyway, the only two times I have had dairy in the past four weeks, has been because of soup...
Last night, we had guests over and part of the dinner was a type of thick soup called 'Ash'. This normally is cooked with butter, and so my wife and her Mom substituted this with extra virgin olive oil (about the only fat I am eating).

Another ingredient in the soup (added at the end) is something called kashk. This is a dried milk whey - that to me, tastes a little like vomit but does add a good taste to foods like ash.

The problem is, I cannot have whey/kashk as it is a dairy product.

Unfortunately, it was substituted by yoghurt - which I didn't realise until I'd already eaten 4 spoons of it.
Knowing that kashk is normally used, I ased if it had been used this time, was told no, so we used yoghurt...
Errr...
Anyway, that kind of spoiled the meal for me a little - I know, that sounds a bit precious doesn't it!
But for me, since the diet is about the only thing I've got (along with the vitmain supplements) to help modify the disease, it worrries me a lot to now have the thought of any dairy whatsoever.
This meant also, no chocolate eggs at easter, showing just how seriously I am taking it all!

The other time was again with a soup that had been made with milk - this one I had only had a single spoon of.

The issue with dairy products is two-fold.
One of course, is the saturated fat.

The other is as quoted here :

A number of cow’s milk proteins have been shown to be targeted by the immune cells of people with MS. Further injecting them into experimental animals has caused lesions to appear in the central nervous system of the animals. The cow's milk MS link is further reinforced by the finding that certain proteins in cow’s milk mimic part of myelin oligodendrocyte glycoprotein, the part of myelin thought to initiate the autoimmune reaction in MS.



This basically means that the immune cells rush to try to attack the proteins. These proteins are shown to be all but identical to those of (parts of) the myelin sheath, so when not attacking the milk proteins, these immune cells then target the next best juicy thing - the myelin sheath, causing
inflammation and lesions. This inflammation response results in the attacks of which MS sufferers are particularly prone and susceptible to.
Worth noting is that these various cow's milk proteins also have been shown to exist in other mammal's milk, apart from human).

So, assuming that my diet was so incredibly low already in saturated fats, this wouldn't have been the problem with the soups - the issue would have been a surfeit of active immune cells, specifically attempting to target these milk proteins. When none are found, the risk is that the immune cells then
start to attack a part of the myelin sheath.

Moo knew!

7 comments:

  1. Eshge man I'm so sorry about Ash - I feel so bad :(

    ReplyDelete
  2. Never mind - at least it gave me something to write about!

    Since it's a problem with ALL milk products, including yoghurt and powdered/formula baby-milk, it becomes evern more important, especially for our children, that we start looking at ways to avoid using them too much.

    ReplyDelete
  3. Made a carrot cake for you to apologise for the yoghurt in the Ash - hope you like it ;)

    ReplyDelete
  4. Hola vivo en Venezuela no se si leas español, fuí diagnosticada hace un año de una hipertensión intracraneal idiopática, inicialmente pense que era una esclerosis multiple porque tenía sintomas muy comunes a los que se presentan en esta enfermedad,creo desde un principio por todo lo que he leido que de todas formas si hay una asociacion entre lo que padezco y la esclerosis multiple , tienes razon yo también tengon aún como nubes en los ojos y asi fue como empece a sospechar que tenía algo , además de los intensos dolores de cabeza y mucho dolor muscular que lo atribuia al stress ,hormigueo en dedos de las manos, pies y cara especialmente en la nariz , te puedo contar que por trabajar en el area de la medicina no me sentía tan perdida y lograba reconocer cada uno de los sintomas que tenía yo paré toda la medicación porque me sentía cada día peor y me dijeron que la única solucíón era una valvula lumboperitoneal y me negue a tocarme mi cabeza,al igual que tú tengo dos hijos y un esposo maravilloso que no ha dejado de apoyarme y de escucharme ,decidí parar la medicación y comence a tomar un multivitaminico inicialmente y pude sentir que había mejoría ,pero la parte muscular no mejoraba y pude leer en internet muchos artículos y comencé a tomar 500 mg de magnesio (puede haber una hipomagnesemia aún cuando los valores de magnesio en sangre esten normales ,se denomina una hipomagnesemia normomagnesica )quise descartar esto y la única manera es haciendo magnesio intraeritrocitario que aqui en venezuela no se realiza pero cuando hay hipomagnesemia puede haber un hipoparatiroidismo secundario a hipomagnesemia por lo tanto decidi hacerme paratormona que es la hormana que produce la paratiroides para lo cual se necesita magnesio y efectivamente estaba por debajo del nivel normal la paratormona por eso comence a tomar magnesio y todos mis musculos comenzaron a relajarse asombrosamente y desapareció todas la tetania y los calambres que tenía, pude controlar mi hipertensión y tengo tres meses que no tomo medicación para bajar la presión intracraneal .

    ReplyDelete
  5. Sin embargo yo he estado dos veces hospitalizada la primera vez cuando me diagnosticaron y la segunda en el mes de febrero ,en esta última vez me colocaron para los dolores Profenid es un fuerte antiflamatorio y me di cuenta que tuve una enorme mejoría los médicos me dijeron que no tenían explicación para lo que me había pasado al colocarme esta medicación de todas formas pude comprobar que tal como lo pensaba había involucrada en esta enfermedad una reacción inflamatoria porque sino no hubiese habido mejoría con el antiinflamatorio,he leído muchisimo buscando porque hay muchos alimentos que no estoy tolerando y que cuando los como me siento fatal y mi hipertension intracraneal aumentaba , concluí que hay un factor que mantiene activo la via del complemento y que esto mantiene el proceso inflamatorio activo por eso cuando paro el antiinflamatorio siento que retrocedo ,hoy buscando quienes pueden activar la via del complemento puede encontrar que había unas proteínas denominadas lectinas que lo activan y que las mismas pueden encontrarse en los alimentos.Mi teoría es que las lectinas en mi caso actuan como un antigeno y activan el complemento por la via de las lectinas y producen una reacción inflamatoria sistémica en cadena que afecta todos los organos ya que estas pueden depositarse encima de los organos y producir citoquinas que aumentan la reacción inflamatoria .Cuando yo ingiero ciertos alimentos la visión nublada aumenta yo pienso que se produce un grado de inflamación que produce cierto edema , yo practicamente no estoy consumiendo nada que contenga trigo , ni lacteos y ha habido muchisima mejoría.
    Hasta ahora no habia conseguido a alguien que quisiera buscar un poco más allá , creo que la medicina está muy avanzada pero me parece que los medicos deben tratar más la base de la enfermedad , que causa estos desequilibrios orgánicos en vez de mandar tantas medicaciones paleativas que a la final deterioran más a los pacientes .
    Me parece que vas por buen camino en cuanto a la alimentación ya que creo que todo proviene por alli , yo comencé a tomar probioticos ya que estos pueden bloquear la absorción de las lectinas y estoy reduciendo los alimentos ricos en estas lectinas .Te haré llegar luego mis comentarios .
    Maria José Acuña.

    ReplyDelete
    Replies
    1. Maria - disculpe - tus comentarios eran cogido en SPAM. Te he respondido por correo!

      Delete