This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
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Happy World MS Day!

So today is World MS Day! and so I feel it's important to say a little something. WE NEED A CURE!!! That's just all there is to it. MS affects so many people and unfortunately is not commonly discussed, in fact, it is often confused for other illnesses and even those who have heard of it, often times do not understand it.

So what is MS? Well, here is the "definition" given by the National MS Society: "Multiple sclerosis is a chronic, unpredictable disease of the central nervous system (the brain, optic nerves, and spinal cord). It is thought to be an autoimmune disorder. This means the immune system incorrectly attacks the person's healthy tissue. MS can cause blurred vision, loss of balance, poor coordination, slurred speech, tremors, numbness, extreme fatigue, problems with memory & concentration, paralysis, blindness & more. These problems may be permanent or may come and go. Most people are diagnosed between the ages of 20 and 50, although individuals as young as 2 and as old as 75 have developed it. MS is not considered a fatal disease as the vast majority of people with it live a normal life-span. But they may struggle to live as productively as they desire, often facing increasing limitations."

Here's my thought on that: MS SUCKS! :) Seriously though, it is important to know and understand that one of the hardest pieces of MS is that it is different for everyone who has it. There are some people who have a Clinically Isolated Event, meaning they have one attack and may never have another, then there are people who have "Flares or Relapses" in which they can experience a variety of symptoms but once the flare is over they do very well, may live several years without another one. There are some of us who not only have flares but also progress between each flare, never completely going back to baseline and others who do not experience flares but progress, some so fast they end up with the loss of mobility soon after doctor's have realized what is wrong. Sure, we all have similar symptoms, similar stories but the reality of this disease is that no two of us are exactly alike. The disease can attack vertally every aspect of our body, from our brain and spinal cord to our muscles, soft tissue organs and even our bones (although that is more related to medication needed to treat the disease). The NMSS definition states that MS is not a fatal disease, and many times that is true, however as someone with MS I have a higher likeliness of developing a "side-effect" from the illness itself (often referred to as complications of MS....such as in my case my Vocal Cord Spasms that would prevent me from being able to breathe, swallow correctly and at times cause me to aspirate into my lungs) or "side-effects" from the medications used to treat MS (such as chemo, interferons, etc.).

I have a friend who is currently doing a paper on MS for her A&P class and as we talked about MS and how it has effected me, it is amazing to realize there is really not one part of my body that has not been affected. Literally from my head to my toes, inside and out, this disease has taken over. Sure, I'm better now since my transplant but this is something I will always have to battle.

I would be very curious to hear from others as to how MS has changed their lives, how you have learned to work around the illness, what parts of you has this disease affected?

Symptoms I have had (or areas affected by either complications from MS or meds used to treat MS): Fatigue, Numbness, Walking, Balance & Coordination Problems, Vision Problems, Dizziness & Vertigo, Pain, Cognitive Function, Emotional Changes, Spasticity, Vocal Fatigue, Swallowing Problems, Headaches (Migraines), Hearing Loss, Tremors, Breathing Problems, Itching, Pins & Needles, Meningitis, Stroke, Cardiomyopathy, GERD, Liver & Kidney Function Problems, Steroid-Induced Diabetes & Hypertension, Heat Sensitivities, Uhtoff's Syndrome, Bladder & Bowel Incontinence....I could go on and on. MS SUCKS! There is no two-ways about it and we need a cure fast!

I hope this helps people better understand MS. Remember this is my experience, my point of view. Not everyone will have this same experience. Take care!


Sinus Symptoms said...

Mothers are the best!

carmel turner said...

A FB forum created by MS Patients treated by Hematopoietic Stem Cell Treatment (HSCT) for MS. Former patients who held a joint desire to have a central meeting point exclusively for MS'ers that have had HSCT treatment or are interested in supporting others in having HSCT as treatment for their MS.

This forum was intended as one of the few forums where it is possible for those interested in treatment, to talk directly to one of the 600 patients in the world that have had the treatment thus far. A treatment that has resulted in progression free remission for 85% of those treated, for periods of greater than 5 years. The forum was to enable those seeking information of first hand experience of navigating through patient selection criteria for the offical FDA phase III trials that are also used at treatment centers offering the treatment currently.

We hope this forum will become the defacto world-wide meeting and central gathering place for MS'ers that have had HSCT to beat their disease and for those that would like to do so without the distraction and confusion of extraneous topics and without anyone trying to sell or market for-profit business interests.

HSCT has been used to successfully treat the following diseases as well as MS.

Rheumatoid Arthritis; Bullous Pemphigus; Chronic Inflammatory Demyelinating Polyneuropathy; Crohn's Disease; Myasthenia Gravis; Peripheral Vascular Disease; Polymyositis; Scleroderma; Sjogren's Syndrome; Vascular Biology

There are over 50 disease of the immunity disease that is treatable by HSCT. If you have any immunity disease come join us. We may not know as much as yourself about your disease but we may have members with the same disease and we maybe able to assist you in finding the research that supports treating your disease.

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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my life with MS (among other things).

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