Oh, MS Stephanie... in Friends With the Benedicts

So I try not to let my MS take over my life completely, even tho it very much defines how my life is lived right now. That doesn't mean I am not fighting and it doesn't mean I am letting MS win. It just means that it is my reality, plain and simple really. It is National MS Awareness month in March so I wrote a special status on FB and here it is: Since it is Multiple Sclerosis Awareness month, I thought I would share my full experience with this disease in case anybody was wondering. I was diagnosed via brain biopsy in late Jan/early Feb 2013. My first symptoms were almost complete blindness in my left eye, walking like a drunk, numbness, tingling, and a headache that would not go away. Since then I was approved for total disability and am unable to work but here is a list of why and my complete symptoms as they are today: - Still legally blind in my left eye and virtually no peripheral vision, also am colorblind. - I am unable to find the correct words for things and often stumble over words when I speak, especially if I am tired or upset, etc. - My memory resets itself and I will not remember something someone told me two days ago. - I have learning disabilities now, my IQ went from 120 down to 88-90. I often have to get people to explain things to me like I am 5. - I choke a lot, on my own spit. I can be sitting quietly and then all of a sudden burst into a coughing fit that is very bad. It is worse when I am drinking something and it does not happen all the time, but it does happen every day and several times. - I still get headaches all the time, and thankfully my medicine to prevent them usually does work. When I go to the hospital for a migraine it is because it failed to do so. - I have a tremor in my hands. It is called "essential tremor" and that means that it affects them more when I am using them like buttoning my shirt, etc. - I cannot tolerate heat, AT ALL. If I am overheated for more than 10-15 mins I get double vision and start having a really hard time speaking. I don't know what would happen if I were to be overheated for longer because I never have. LOL. I do not play games with my MS! - I have problems breathing because the muscles in my chest have become too weak to take very deep breaths. This makes it feel like I can't breathe but I can, I just take short shallow breaths instead. As a result, even a short walk from the parking lot to the store wears me out and has me gasping for air sometimes. It gets worse on some days than others. - My legs and other parts of me fall asleep easier now than they used to, only instead of "funny feeling" pins and needles, they are extremely painful for me. I try to never let this happen because it hurts like hell! - Sometimes my whole head goes numb. It starts in weird places like on my forehead but eventually it involves my entire head and it tingles. This would happen even before I was diagnosed. Laura says I should have mentioned it. I had no idea I needed to! lol - I have very painful muscle spasms, kinda like charlie horses but they are in my thighs. They stay very tight for a long time, sometimes more than a day. - I am in pain all the time in my muscles and just random parts of my body. I have no idea what causes this but it is a common symptom of MS and it is just simply "pain". lol. - My balance is extremely bad. Sometimes I just start tipping over out of nowhere and have to grab something. I have only fallen twice tho thankfully and at this time require nothing to assist me in walking. I don't have a HUGE list of physical symptoms. The ones that make it so that I cannot work are really all in my head. LOL. No two people with MS are alike and my friend who has mostly physical symptoms agrees that neither is better. It is all bad. Oh, I forgot (haha) depression and anxiety too! And also sensory processing kinda like a person with autism has. I melt down in situations where I am exposed to too much for too long like grocery shopping when it is very busy. I get overtired and have to process too much and by the end I feel like I may cry. So.. yay! lol. Well, that is my experience so far with MS. I have not had a relapse yet, but they happen usually once every 18 months and it was a year this past November since my first so I am expecting it sometime soon. I will get new symptoms or a worsening of the old ones and they will return. I think you pretty much know when it is happening, so I don't think I will miss it. LOL. Well, there ya go. Happy MS Month! haha