My Story

Good morning world, I have been inspired to start this blog by my lovely friend Sally aka http://butterflyfm.blogspot.com/ She like me has a debilitating condition called FM Fibromyalgia, whereas I suffer with RRMS Remitting Relapsing Multiple Sclerosis.

I was officially diagnosed In July 2009 after I lost most of the feeling in my lower body. After a while it became too painful and I was admitted to hospital. Within 2 days I had tests and an MRI which revealed the awful truth of MS. To say i was in shock is an understatement. Within a few days I had my life ripped out from underneath me. The world of MS was alien to me, at first I started doing some homework and thought I could handle the knowledge that was being put in front of me. However, where I would normally gather info and weapons to fight something, this time it was different. I recovered from the relapse by about 80% and returned to running my business from home. I had to reduce my work hours from an average of 10-12 hrs per day, to 6hrs on a good day and 0-4 on bad days, fatigue etc. Once in this place, mentally I was not strong enough to deal with all that the MS had to do with, so I turned my back on the genuine support of the MS Center (lovely people) and the MS Support Nurses, who can be lovely, but I felt were trying to push me towards the injections, which is not where I wanted to go. I tried half-heartedly to take Vit D's, Vit B's and fish oils, but i was not really doing enough. I will soon be looking into what should be the optimum dose to help my body and will be starting on them soon enough. The reason for not making any changes to any intakes at the moment is that by the end of this week I should be starting a drug called LDN. It has lots of evidence behind it in the treatment of MS and many other autoimmune conditions such as FM, ME, Cancer, Crones, IBS, Colitis, and many more. In a nutshell LDN, "Low Dose Naltrexone", was initially licenced at a much higher dosage to fight the addictions of Heroin, anything from 50mg to 300mg per day. Now for our benefit it is given from 0.5mg to 4.5mg per day. There is a wealth of info out there on where and how to get it - go to the links I have provided, including the links at the bottom of my blog to source the info on conditions etc. Dr Chris Steel, from "This Morning", has as of last December, handed in a 13,000 strong petition on to No.10 Downing St. The aim of this is to get the government to put their hands in their pockets to pay for official clinical trials so that LDN can be the front line drug to be offered to so many people. However, what usually happens is that the big drug companies want their expensive profit making drugs to go to you first. You know, the ones that probably won't help you that much, but will most likely give you side effects that will require further drugs and possible hospital stays etc, thus making more profit etc etc. I will let you judge the rest as and when you look into it.

My GP has now prescribed the LDN for me, so I am very grateful to him for giving it a go. I will keep you updated as to the results, fingers crossed.

My intention is that this blog will mainly feature my journey with MS. However, I am hoping that with the help of LDN, a good diet and vit's etc I will have most of my life back and will be able to return to as much normality as possible. Therefore, you will see my blogging about other random parts of my life.

If you or someone you know has MS or any other condition and want to talk, please contact me on here and I will gladly gas away as much as my energy levels will allow me to.

For now though I am going to have a rest and just say that I hope you all have a lovely day.

Take care world
Suzanne x