- B
- K
My name is Vanessa Weygang and I have MS but MS WILL NEVER HAVE ME.
I am a wife and a mother to three beautiful children.
In 2009 at the age of 38 I went to replace my glasses. While having an eye test they covered my right eye and I asked “where did all the letters go?” This was the start of my new normal.
They discovered I had optic neuritis. The eye specialist said I either had MS or a brain tumor but not to panic. What a thing to be told! After having multiple MRI’s on my brain and spinal cord including a lumber puncture where they test the fluid in your spinal cord I was diagnosed with relapsing-remitting multiple sclerosis.
Multiple sclerosis, also known as MS, is a chronic disease that the persons own immune system attacks the central nervous system. This is why MS is known as an auto-immune disease. Nerve fibres are surrounded by myelin, which protects them. The myelin sheath of a patient with MS is attacked in multiple areas: this leaves scar tissue and can affect any part of the body.
After going through all the emotions from denial to anger to depression I picked myself up and said I will not let this disease beat me. I continued to exercise and eat well and tried to keep as strong mentally and physically as I could. But MS has a mind of its own.
In the past 6 years I am now on my 4th immune suppressant drug after relapsing on every other one we tried. From self injecting 3 x’s a week to a once a week injection, to a tablet everyday and now I go to the hospital for monthly infusions to receive a drug that I only feel okay 2 out of 4 weeks. This drug increases the risk of a rare brain disease called progressive multifocal leukoencephalopathy or PML that usually leads to death or severe disability. There is no known treatment or cure for PML and my risk is higher once I have been on it for more than two years. Everyone can imagine how unhappy I am about being on this drug and I’m still relapsing having optic neuritis again this year. All these immunotherapies are just slowing down the progression of my MS and are not a cure, in fact there is no cure for MS.
Everyday I deal with symptoms of fatigue, visual problems, balance and coordination problems, cognitive and emotional disturbances, abnormal speech, bladder issues, leg spasticity, heat & cold sensitivity and numbness down my whole left side from my face to my hand. I also suffer often from what is called an MS HUG. Sounds nice? It’s not. I actually thought I was having a heart attack when I first felt it and it can last from minutes to hours and nothing relieves the pain. If you were to look at me you wouldn’t think there was anything wrong. MS can be an invisible disease and we suffer quietly. Besides all the lesions I have on my brain, I have a lesion on by stem cord and my spinal cord. I feel I am playing Russian Roulette and I’m scared of the long-term outcome.
I watched an episode on 60 minutes about a wonderful woman who wanted to make everyone aware there was hope. Her name is Kristy Cruise and she went to Russia to have a treatment called Hematopoietic Stem Cell Transplant or HSCT. This has halted her MS.
HSCT is performed routinely all over the world for cancer patients and done everyday in Australia. Although it is still in trials here for auto immune diseases including MS it is performed in other countries off trial. I fit most of the criteria to have it done in Australia except I am not disabled enough. I do not wish to get to that stage with the hope I can have it done in my country. HSCT will halt my disease, it will not reverse the damage already done.
HSCT involves the removal of my stem cells, 4 days of chemotherapy and then my stem cells are reintroduced so basically resetting my immune system, so that it doesn’t attack itself anymore. For more information on HSCT please click on the My HSCT Treatment link.
I am so lucky to have been accepted to receive HSCT in Russia on April 19th 2016.
As you might imagine, the journey and medical costs for me to have this chance for a normal life are extremely high. I need to raise a minimum of $70,000 AUD.
I will share my journey with those who want to follow on https://nessbeatsms.wordpress.com/
You can also like my Facebook page at https://www.facebook.com/nessbeatsms
If you can’t help me financially please think of me in your prayers. I appreciate your support.
Thank-you for taking the time to read this.
Vanessa xx
I am a wife and a mother to three beautiful children.
In 2009 at the age of 38 I went to replace my glasses. While having an eye test they covered my right eye and I asked “where did all the letters go?” This was the start of my new normal.
They discovered I had optic neuritis. The eye specialist said I either had MS or a brain tumor but not to panic. What a thing to be told! After having multiple MRI’s on my brain and spinal cord including a lumber puncture where they test the fluid in your spinal cord I was diagnosed with relapsing-remitting multiple sclerosis.
Multiple sclerosis, also known as MS, is a chronic disease that the persons own immune system attacks the central nervous system. This is why MS is known as an auto-immune disease. Nerve fibres are surrounded by myelin, which protects them. The myelin sheath of a patient with MS is attacked in multiple areas: this leaves scar tissue and can affect any part of the body.
After going through all the emotions from denial to anger to depression I picked myself up and said I will not let this disease beat me. I continued to exercise and eat well and tried to keep as strong mentally and physically as I could. But MS has a mind of its own.
In the past 6 years I am now on my 4th immune suppressant drug after relapsing on every other one we tried. From self injecting 3 x’s a week to a once a week injection, to a tablet everyday and now I go to the hospital for monthly infusions to receive a drug that I only feel okay 2 out of 4 weeks. This drug increases the risk of a rare brain disease called progressive multifocal leukoencephalopathy or PML that usually leads to death or severe disability. There is no known treatment or cure for PML and my risk is higher once I have been on it for more than two years. Everyone can imagine how unhappy I am about being on this drug and I’m still relapsing having optic neuritis again this year. All these immunotherapies are just slowing down the progression of my MS and are not a cure, in fact there is no cure for MS.
Everyday I deal with symptoms of fatigue, visual problems, balance and coordination problems, cognitive and emotional disturbances, abnormal speech, bladder issues, leg spasticity, heat & cold sensitivity and numbness down my whole left side from my face to my hand. I also suffer often from what is called an MS HUG. Sounds nice? It’s not. I actually thought I was having a heart attack when I first felt it and it can last from minutes to hours and nothing relieves the pain. If you were to look at me you wouldn’t think there was anything wrong. MS can be an invisible disease and we suffer quietly. Besides all the lesions I have on my brain, I have a lesion on by stem cord and my spinal cord. I feel I am playing Russian Roulette and I’m scared of the long-term outcome.
I watched an episode on 60 minutes about a wonderful woman who wanted to make everyone aware there was hope. Her name is Kristy Cruise and she went to Russia to have a treatment called Hematopoietic Stem Cell Transplant or HSCT. This has halted her MS.
HSCT is performed routinely all over the world for cancer patients and done everyday in Australia. Although it is still in trials here for auto immune diseases including MS it is performed in other countries off trial. I fit most of the criteria to have it done in Australia except I am not disabled enough. I do not wish to get to that stage with the hope I can have it done in my country. HSCT will halt my disease, it will not reverse the damage already done.
HSCT involves the removal of my stem cells, 4 days of chemotherapy and then my stem cells are reintroduced so basically resetting my immune system, so that it doesn’t attack itself anymore. For more information on HSCT please click on the My HSCT Treatment link.
I am so lucky to have been accepted to receive HSCT in Russia on April 19th 2016.
As you might imagine, the journey and medical costs for me to have this chance for a normal life are extremely high. I need to raise a minimum of $70,000 AUD.
I will share my journey with those who want to follow on https://nessbeatsms.wordpress.com/
You can also like my Facebook page at https://www.facebook.com/nessbeatsms
If you can’t help me financially please think of me in your prayers. I appreciate your support.
Thank-you for taking the time to read this.
Vanessa xx