MS Forum Site of information

nani

In 2003 I discovered that I suffer from MS. When looking back on it now, I realise that the first signs had already been apparent six months before. My husband and I spent our holidays hiking in the mountains. Gradually I lost control of my left knee and one day walking uphill became impossible and downhill was difficult. That brought a sudden end to our hiking holiday but it was not until I heard the diagnosis of MS, that I feared that this could have been my last hiking holiday ever. However, the neurologist told me that the course of MS was not necessarily irreversible.

The consequence

The symptoms were mild for two years and I managed to hide the disease. As a self-employed physiotherapist I was able to continue working but I cut down my working hours. I was only capable of walking short distances and they kept getting shorter and shorter. The sensation in my toes changed; I felt as if I was walking on a sponge and cramps started to occur in the back of my thighs. Unfortunately, these cramps intensified with time. Moreover, controlling my bladder became more and more difficult. Overall, very disturbing developments that make me feel ill just thinking about them.

But I wanted to feel well and I started to look for alternative treatments. In April 2004 I went to India for an Ayurveda cure. I benefited considerably from that cure and I felt my constitution had noticeably improved. But after only one week at home the improvement had almost disappeared. That made me consider whether there was anything in my life that constantly harmed me? My therapist and I started a look into my past for a possible traumatic reason for my illness. And I actually found something – incest. I started to deal with what had happened in my childhood. I was able to forgive and I even managed to reconcile myself with what had happened to me. I felt relieved and I started acupuncture – which I hoped would be helpful. Unfortunately, none of this led to any improvement.

In January 2005 my husband, who was in Surinam at this time, and his sister in the Netherlands both read an article in the “Telegraf” about a cancer patient who found himself with a very poor prognosis. Autologous stem cell therapy had helped him to overcome his hopeless medical condition. They both called and told me about it. We all agreed that I should get further information. Therefore, I contacted the physicians who both advised and examined me. After the second consultation I was finally accepted for treatment and I was very curious about it.

First stem cell treatment in March 2006

The extraction of the bone marrow was painless and about five million stem cells were isolated, an average amount for a person my age. Re-injection of the cells was a two-step process: the first half of the stem cells were injected directly into my spinal cord, the second half were administered intravenously. After that I felt an increase in cerebrospinal pressure. I could hardly move my spine , as it was so painful. Lying was all right but I was very careful when sitting up. Even though I could manage to sit in a stiff and quite upright position it was very hard.

The result

The feeling in my toes changed immediately after the re-injection and the spongy feeling was almost gone. The cramps in my thighs reduced significantly and after about three months I had regained more control over my bladder. I started to get fitter and walking became easier. Although I was still only capable of shorter distances, walking was not as exhausting as it used to be. However, I had another MS episode only six months later. The positive effects of the treatment came to a halt. My balance worsened, I lacked energy and became tired more quickly. Managing the short distances from my bed to the bathroom or from the dining table to kitchen was very exhausting. I was given cortisone and my condition improved. I was almost restored to the same condition I had reached after the stem cell treatment.

My colleague and I exercised regularly and we particularly focused on training the coordination of the muscles in my left knee. Moreover, I maintained a healthy diet and I took quite a few nutritional supplements. Eating healthily helps guarantee that my body had all the essential nutrients. And there was one more important point: I tried to live in balance with my needs so I could still lead a fulfilling life. Of course, I knew that there would always be days when shopping was torture and getting there seemed to be a day trip. But I know now that good days lie ahead and those days give me power and strength.

Second stem cell treatment (proposed for a later date)

In September 2006 I had bone marrow extracted from my hipbone for a second time but this time as a precautionary measure. The isolated stem cells were frozen and stored. I will have them re-injected once it is possible to actually condition the stem cells; for example, to make them become a nerve cell. I have heard that research in that field seems to be quite advanced.

My advice

Listen carefully to your body and be mindful of your feelings and emotions. Learn to realise what you really want.
Her story in brief:

Multiple sclerosis (MS)
The consequences: only capable of walking short distances; even those short walks were very strenuous, cramps in the legs, no sensation in toes, almost no bladder control.

Stem cell treatment in March 2005
Result: manage to walk longer distances, felt less fatigued, sensation in toes, regained control over bladder, in better physical condition. Re-injection procedure was safe, no adverse effects

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It is amazing, so many are against it, but I say it's not a life until its in the womb of a person who plans to give birth. There is so many unwanted kids , who wind up living in the streets, they are either abused or unwanted. They turn to drugs and other un ethicials things to live. The streets is there hope. If this can help before it become full ,then I am all for it. It's not killing. It's helping a person with an illness that may make them better. MS comes in all sizes, in children,male and female. It don't matter what race you are, what religion you are, it just attackes unknowing and it is not diaginosed for yrs. Living with it as those who has MS is not a fun.As a person who has MS , I have it since I was 24 and was told when I was 30yrs old. And could of have it longer. Many may not agree with stem cell research but I am all for , it is not only for MS, for many other illness too.
Not being selfish but being real here. What other choices do we have.
Think about this, ok, There are tons of sperm in the sperm banks that they don't use. Do you think of that as being a potenial person? Of course not, need an egg to combine to make a baby. But I look at it this way there is alot of abortions , that is sad but in some cases is needed. I am against abortion but unless it's a rape or something medical.
I know I am going around in circles here. But my point here is stem cell research has shown to of helped Gia out and we should embrace the fact this is a step forward towards a cure.
I want to see one in my lifetime and have this illness be gone as a MonSter......
Nani Rolling Eyes

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Welcome to my info site, as I call it. I have Multiple Sclerosis in secondary progression stage. I post what I find useful and hope you can help out with a donation of $1 if you can. If not it's ok... thanks Nani