Or is it just me? I have not had 15-25 years medical training. The MS is apparent even to my untrained eye on an MRI. I had no real knowledge of MS prior to symptoms.
I can tell you since I was ten, I never believed I would make it to retirement. I have deliberately never bought a house, had children or arranged a pension for this reason.
I should add here that witnessing pension schemes being ripped off my whole life did not inspire confidence in a pension anyway!
My condition got worse the more stressful work became. I wanted out of my job, it didn't pay well and I was constantly infuriated by the delays and setbacks to my work caused by Mr & Mrs do you know who I am, blaming me for their lack of knowledge.. (IT Support). They would have the nerve to insist the operating system was configured to work outside of a Microsoft supported configuration. My then boss is a slag to customers and he tells them he will do what they want, even though I would warn of the impending failures. My call on the pay, never liked money! It is greed.
I can also tell you the proposed placebo CCSVI worked for me for nearly a year. I pursued CCSVI (Chronic Cerebro Spinal Venous Insuffiency) as it made sense in a big way for me. When I was ten my little brother rigged up a washing line to garrotte me off my bike at speed. He succeeded and my neck hurt for over a year. It therefore made sense that my jugulars could be narrowed from that injury. I went to Sofia, Bulgaria for diagnosis and treatment for CCSVI under professor Grozdinski. Sure enough both my jugulars were narrowed, they were both opened back up with angioplasty. This procedure gave me the same butane spray feeling in my brain while the balloons were inflated that I have suffered with since ten. So I do still believe that MS may have something to do with restricted blood flow to the brain as I have been feeling that since the garrotting off my bike at speed.
And then the miracle...! I woke up the next morning having slept like a baby ALL NIGHT, first time in around five/six years. I felt wonderful. I got out of bed and I could stand on one leg! A bit shaky on balance, but no pain. There were five patients being treated at the same time. Three of us felt wonderful, felt cured. I commented that it felt like my brain had been a damp cellar for years and somebody has opened a window. I was so overflowing with energy I ran up and down the hospital stairs roughly every hour as I needed to expend the energy. :-) The two people that saw no miracle was an elderly lady from Canada that had been treated before with some success but was in a bad way and had been sick for too many years, and a Spanish young man who did not believe it would work. Why he spent five grand on treatment he didn't believe would work is beyond me. The Canadian couple had a film crew following them as it was potentially big news, a cure for MS. The film crew had asked me before treatment what I thought about the claim CCSVI was a placebo. I told them if it was a placebo it was a good one and quite frankly that will do. I do consider the eleven months I enjoyed symptom free to be worth the five grand along with changes to my physiology that mean I am still in less pain than I was before treatment. When I left the hospital I stubbed my toe on a curb, I have never been so happy to feel pain as it was just stubbed my toe pain, not crawl up in a ball pain. I was laughing, much to the disturbance of others.
When I got back home I bought an MP3 player to play one song over and over, New Shoes by Paolo Nutini. I danced everywhere, including to Frimley Park Hospital to inform my dedicated MS nurse I was cured. I think I pissed him off as my dedicated nurse hasn't seen me since! Over five years ago now. He told me I can't see him because I hadn't seen my neurologist for a while! When I was sent the letter informing me of a dedicated MS nurse being assigned to me, it said my MS nurse was to be a bridge to my neurologist to save waiting for referral from a GP. So he is supposed to make me said appointment! I am autistic and the level of incompetence by non autistics always winds me up. Other people’s incompetence made me homeless at fifteen! Supposedly under social services supervision. My case worker was on holiday when housing benefit wrote to me to tell me I was not entitled to housing benefit at fifteen. I was on a YTS at 28.50 a week, Folkestone social services told me there was nothing they could do as Tony, my case worker was on holiday, how is that behaviour not grossly incompetent? I could of handed myself into care under 18 but nobody told me that! The receptionist should have, after all she was sending me away to be homeless at fifteen! How did that even happen to me?
Since the proposed placebo worked I have been playing with mind tricks that can see me feel very well for days or even weeks. I have always had remarkable physiological control. I can move pain for instance, only for about twenty minutes but enough to appreciate the respite. I am currently going through chaos at the moment as I have had to quit work and the government is in the process of deciding how much to rip me off for! How that works I don't know, the landlord is not going to take a reduction is he? Anyhow once I am through this I intend to get well by thought alone. If I can than MS for me at least, is an autonomic neuropathy and I will hopefully prove it before I die by getting well.
There does seem to be links between MS and autism, it is my contention that autism, the extra deep thinking, and the constant frustration of others incompetence, allows for an autonomic neuropathy to develop easily. I do not believe MS is a disease. It is a condition, a mental one at that. If I can cure myself of MS then other auto-immune conditions could be caused by autism.
Reverse blood flow; The CCSVI theory must be linked in some way. A recent revelation, Statins, is seeing great trial results in patients with a progressive form of MS. As Statins are a blood thinner it stands to reason that they will be helping prevent reverse blood flow. I still have a chronic cerebro venous insufficiency in the form of my left jugular. It renarrowed about ten months after the angioplasty procedure that opened it with dramatic effect. If I were not in some way allergic to Aspirin, I would be taking that while I wait patiently for trials to affirm results. I am also aware that the neurological community insist it is a disease and not a condition, I myself though have reservations and I do believe it could be a condition, not a disease. I wish the world acted faster. Aspirin could work for those not allergic.
Update 10/02/2017 Unfortunately my health is being affected by the isolation I am being forced to endure and I am deteriorating. The council have short sightedly housed me in a non wheelchair accessible property out in the sticks. I am miles away from the people that care for me, miles away from any social engagement and resulting sanity adjustment. I do not understand why the word progressive in primary progressive multiple sclerosis is ignored. The people involved do not want to look up PPMS even though they have easy access to this information via the Internet. As an extra kick in the teeth, the money I saved the taxpayer by purchasing my own mobility aid is being destroyed by the weather, at risk of theft in the garden. As the property is not wheelchair accessible I cannot get my mobility scooter inside. Because my mobility scooter is not NHS funded the council are telling me they have no responsibility to cater for it. I was refused the extra sixteen pound odd a month to have a wheelchair accessible property with alarms to press if I should fall with serious injury. My princess offered to pay the small amount of money extra a month but that was refused too. I formerly complained on the tenth of December just one day after the decision had been made but I am still not seeing my complaint even acknowledged let alone dealt with. I was refused the funding because Asperger syndrome is not formerly diagnosed but this is completely nonsensical. Asperger syndrome is not responsible for the risk of serious injury MS is, which is of course fully diagnosed by an eminent neurologist. They have kicked the problem down the road meaning I will need to move again once I completely lose the use of my legs. Moving is stressful and hard work for all, I do not comprehend why a sick person has to be kept moving, it is quite cruel.The isolation is depressing me to the point of mind tricks are unachievable.
It is also not helping that the system has been ripping me off of my entitlement to welfare benefits. I first claimed in January 2016 when I had no choice but to quit work due to my illness. I was placed on an assesment rate while I wait for salaried people to get around to looking up primary progressive multiple sclerosis. This assesment rate sees me surviving on around thirty pounds a week less than my entitlement although it is declared I will be back paid the underpayment once the thirteen week assesment is completed. Surprise, surprise I am still waiting. I actually suspect it is being stalled deliberately until after April 2017 when cuts to benefits will be imposed on new claims for sick and disabled people to get them back into work. They will then tell me my claim is new and I am subject to the cuts and therefore not be paid my full entitlement. Also not entitled to the extra thirty pound a week I should be back paid for over 65 weeks that I will have been underpaid by that time. Is this autistic of me? I will report back. I have appealed to clever people to help me but that is just resulting in lip service with no substance. I have never claimed a penny of entitlement unless absolutely necessary my whole life but this is not rewarded, no wonder people claim every penny they can get. The system encourages it. I do wish genuine claimants would not be treated as lazy benefit cheats and career claimants by default. It is demoralising and quite wrong.
Update 20/02/2017 I saw last week, what is now my new neurologist since moving back here to my town of birth. He instinctively with his knowledge, suggested my condition is secondary progressive as opposed to primary. From what I know from my own research into just the one patient, me, I concur. Once the opthamologist that prognosed me alerted me to the likelyhood of MS, I studied. Amusingly upon my first appointment with a neurologist, I was told I would become the best specialist in my condition as symptoms were erratic and different for different patients. Due to an episode of optical neuritis five years previously I was initialy diagnosed remitting, relapsing. During a discussion with my neurologist a few years later, I expressed my concern with the diagnosis as I was not having any remission periods and was just gradually getting worse. I was surprised by the leap to primary progressive but I have a lot of respect for dedicated learning so I did not challenge him. As a subdued irony I will now receive more care as a result. As well as a return to access of a dedicated MS nurse, I will be getting physiotherapy too. This could improve my balance I am told, and see me fall less. Most happy. A less pleasant detail, but I will also be taught how to self catheter as water retention is becoming an issue. I have been controlling this with the effect of type two diabetes by consuming sugar when I need to pee but this is probably not wise of me and I doubt that it would be a medically approved method. As an added benefit, the extra care will ramp up documentation, appointment letters etc, for the benefits agency that assume I will have for an untreatable condition. I do wish the benifits agency was not relying on an incorrect rigid framework for training that staff are not allowed to deviate from, bureaucracy eh :-) I consider this paragraph an imoprtant addendum as I will not be editing the words that flowed from my heart so far. It is important to me.
Update 27/02/2017 I should point out I am now a bed blocking candidate. I am in a non wheelchair accessible property with terrible balance and thunderous leg shakes on good days. On bad days I cannot use my legs at all. If I do fall with serious injury in this place I will need to phone an ambulance if I can crawl to a phone. Once in hospital, it would be irresponsible to discharge me to a home that I cannot move around and no help is easily available as the rural location with no panic alarms is the reality. My formal complaint about the schoolboy error that has put me here is still yet to be acknowledged meaning no-one gets to learn anything. Part of the bouncing around of the complaint from one slippery shoulder to another has seen adult social services supposedly helping. This help consisted of being sent a leaflet offering prescription delivery. Seeing as my condition has no known treatment, most insulting! We live in a society that likes to pretend it cares for its sick and infirm. This is very obviously not true, I have been ill my whole life with a condition you do not understand, I can understand the care failure when it comes to Asperger syndrome. MS though? Why am I still not being cared for? Our government is telling us an aging population is to blame, really? So all the government are telling us with that soundbite is they failed to prepare with births and deaths registry information to hand. Plus of course sick people poisoned by fossil fuel fumes are to blame! The same government that disrespects whole nations as if we were still living in a cold war era. Mankind is stupid, mankind is pretending it is Ok. Our government is telling you it is whilst penalising the sick for the degradation of society caused by greedy businesses failing to pay people fairly. An illusion of knowledge. Please, please wake up people?
Still not convinced mankind is stupid? We are told to be proud of a nationalised health service that is failing to the point of deaths, every day. But it is fully free! Why on earth? Our three primary addictions are not at all well considered. We are poisoning the very air we breathe with fossil fuel and chemical contaniments. Zero emissions could of been imposed twenty years ago. Our water supply, tap water, has deterioted in my lifetime. A key element of our survival is degrading yet we are charged for that. And then food is being poisoned by processing, yet rising in cost partly because of said processing. But at least we have a free health system that will, dependant on your place in the queue, fix any problems created by the three core failures. Stupid as a stupid does.