Up to now, this blog writing has been a bit of a breeze - mainly because I've been writing from memory of the major events that got me here, whereas soon, I'll have to decide if the blog simply becomes a record of how I feel, or what I've learnt on a daily or weekly basis. I'll probably keep on adding links to other people's pages and latest research as that way, I can stand tall on the shoulders of giants.
Anyway, it's clear by now (thanks wife...) that I've already muddled some of the time-order - I thought it was within about 1-2 days after I got home that I'd had the brainwave about foodstuffs, etc.
It turns out it was 6 days later, and only after my wife had already found a couple of interesting links...one of which I savaged somewhat a couple of blog posts ago.
Additionally, I've completely missed going back to the hospital for the final course of corticosteroids, the subsequent check for tuberculosis reagent and...
Truth be told, they were both very straightforward. I had already been allowed to go home on the Saturday and then on Sunday, our friend Farshid came over to collect me and take me to the hospital again for my final dose.
Nothing out of the ordinary happened although I probably then made the follow-up appointment to see if I could get my Lumbar Puncture results, and also speak with the Neurologist about drug therapy. Meanwhile, there was again, the small matter of 'administration' (read bill paying) which hurt more than the injections.
This order of events then fits in because, after the food/diet investigation I'd gone into, I then felt a little more prepared for this subsequent appointment with my neurologist.
So, Sunday was taken care of, I'd had the corticosteroids, made an appointment to see the Neurologist and Farshid drove me home again.
The next day I was back to the hospital - I had to get someone to examine the injection site where the TB reagent had been injected. As there was no reaction, I knew I was safe and I tootled off home.
Luckily for me, the metro station (Mirasierra) next to the hospital is on the same line as my home stop (Ibiza ), which is just 1 street block away from us. This is about 50minutes journey time and allows me to read books and listen to music. It’s not exactly meditation but I like it.
We have other friends in Madrid Madrid
He would also be interested in my MRI scans, which the Ruber International Hospital
My wife had already made the appointment (her and Belen having cooked it up between them) and Belen (who is Spanish and speaks the lingo far better than I do) arranged to meet me there.
Dr. Arroyo González is the Manager of the clinical Neurological unit at his hospital. He had me lie down and then I had to cross my legs (right over left) and then i had to try to draw my right leg up, drawing an imaginary line with my heel, up my left shin and onto the knee - this was then repeated for the other leg. And then the tests were to check my eye movement and depth of field. To do this, he raised his index finger and had me follow it left to right, by moving only my eyes, and then later on, I had to touch the tip of his finger with my left and then right fingers.
I had no problems with these tests and I remember now also doing similar tests at the Ruber Hospital
Dr. Arroyo González looked at the MRI scans and read the medical histories - his view was that the eye shadow I'd had, might not have been indicative of MS, but he agreed that the lesions found and the current numbness (which had all but gone by now), were clinical symptoms of the MS.
The discussion moved to drug therapy - basically the same discussion as I'd had with the Ruber DRs - but he did mention clinical drug trials that some of his patients were involved in suggested that oral drugs were starting to appear, negating the need (in some cases) for daily injections.
I also told him of my approach to attempt via diet/supplements, to manage my symptoms and he seemed happy enough with that although wasn't aware of the Vitamin D3, B12 or Dairy protein issues,
Cheeky man - yes, I remember if he thought that, whilst avoiding fatigue was important for MS sufferers, did it mean that running a marathon was also something to avoid (I'd started recently thinking about doing something super fit and positive).
Anyway, he looked me up and down..."I wouldn't recommend it - not with your body"
At least he qualified it later by saying if I got into some fairly serious training, then there was no reason why not...
This must have been the male equivalent of not sweating much for a fat girl.
On which wonderful news, we finished - I was invited to come back again with the Lumbar Puncture results and to keep positive - Belen and I left and that was that!
When I was diagnosed with MS over 17 years ago my neurologist told me to keep my total daily fat intake down to 20 grams. I have had no further relapses since starting this diet. I have never used any of the CRAB drugs or steroids (except topical for allergies).
ReplyDeleteYou are fortunate to have found out about this low fat therapy. The MS society and most neurologists try to discourage it (for apparently sinister reasons). I suggest reading the section of the forum on Swank's website dealing with thoughts about docs.
Recently it has been proposed that narrowings in the internal jugular and azygos veins lead to sluggish blood flow that results in blood brain barrier leakage and subsequent MS attacks. Many MS patients have received venous angioplasty to widen these veins, with about 1/3 reporting marked improvement. However, this procedure often causes scarring in the veins, and symptoms often relapse after several months. I presently believe that decreasing blood viscosity with a very low fat diet is a better long-term solution for poor venous blood flow. The head tilt that your pictures show and your symptoms that occur when your head is twisted suggest a problem with your internal jugular veins.
Thanks for the reply.
Deleteyes, I am pretty happy that I reached to the low-(saturated) fat diet idealogy, and only within a few weeks of original diagnosis.
The head-tilt/dizzines (I think you are referring to CCSVI?) might be more a symptom of dehydration also.
I had mentioned the CCSVI to my first neurologist and his view was that it was entirwely unrelated.
He showed me a (medical access only) website that had looked at CCSVI processes and this seemed to confirm that it was not supported and not clincally proven either.
There are also other websites that appear to be dismissive of this treatment also.