This is my introduction to a life with MS. From the beginning - with no preconceived notions, expectations, or knowledge. Post one: from initial suggestions of the disease to the official diagnosis.
My life is pretty candid and open. I am both forward and outspoken and I'm unsure as to why I would want to hide anything from anyone even understanding the possible consequences. Some would say I always offer TMI... but I've got one very short life to live. I was diagnosed 19 days ago. Here's what I have so far:
In Fall of '08 I started having Lhermitte's Sign ("Sudden transient electric-like shocks extending down the spine triggered by flexing the head forward. Due to a disorder such as compression of the cervical spine (the portion of the spinal cord within the neck" Medterms.com). My sensations started one day driving home when I bent my head forward the tips of both my feet would tingle as if they were asleep. This sensation happened exactly as I bent my head and disappeared so quickly after. After a few days I was nervous, as anyone would be - but didn't have many fears going in to see my doctor. She was the first one to use the name "Multiple Sclerosis" - and that set the fear in my bones.
She tested my reflexes and strengths, all of which were good. As Lhermitte's Sign is a sign for many things. But to be safe I went to a Neurologist who did the same things she did and recommended MRIs. After 3 MRIs showing no lesions and my symptoms becoming less frequent the Neurologist had only asked that if something else came up that I come back to see him.
Summer of 2009. My left leg goes numb. Not completely, only the skin. And its not numb like your leg falls asleep. The sensations are just very low except to cold in which they are hypersensitive too. I have no clue what is going on. Shaving my legs is super weird, I can't feel a thing grazing against my skin. Drying with a towel - even weirder. My initial reaction is a pinched nerve and I go to a chiropractor who says that can be many things wrong, even something neurological, but he will check me out. After my first adjustment many of the sensations come back but I am still very sensitive to cold.
July 2nd, 2009. After returning home from a concert with my Mom and Sister my knees ached and my legs were heavy. Thinking that I was simply tired I gave it no second thought. The next day I attended a friend's 3rd of July party. It was on her rooftop deck and the stairs seemed more difficult than ever before. Every time I had to use the bathroom I dreaded coming back up. After the party on my way back to where I was staying some friends bumped into me and I decided to go out for a drink. At bar-close we were walking back and I could significantly feel the weakness in my legs. Standing still was difficult, I wrote it off to the drinking but I had only 3 beers. That night as I lay in bed my legs felt 100 pounds a piece. It was such a strong feeling. I tried lifting each leg on its own and could not tell if i was half asleep, drunk, or unable to life my own legs.
July 4th, 2009. This is the day I know something is significantly not ok. I got up and ready to go to another concert that evening. My walking was clumsy. I could not figure it out. My friend came to pick me up, we walked to the shuttle and I noticed that nothing felt wrong but my legs weren't reacting 100%. I didn't think about it again until later that night standing for the concert. I couldn't. My legs quivered beneath me. I wavered like a flag at sea fighting the water and winds. Instantly I became embarrassed, scared, and angry.
Now my next doctor's appointment is with my Physician. She does all the in office tests she can with my reflexes, strength, balance. All seems ok except for my leg which is definitely weak. She suggests another MRI and a visit to the neurologist. In this time the numbness of my left leg is subsiding but my walking is very "drunken". I have a heavy drop in my leg, walking in a straight line is pretty much impossible. This is all very fun for my 5 block walk to and from my car for work. I can't run if I had to, so I've every caution crossing streets and being aware of my surroundings. Nothing is more scary than imagining something coming after you, be it car/person/animal and not being able to even get a fair shot at running away.
The neurologist suggests 3 more MRIs to cover Brain to lower back. Despite that my walking is becoming more normal, or I am covering it up better he says, he is thinking Multiple Sclerosis. My initial reaction is tears.
August 3rd, 2009. After my second MRI my neurologist calls me and tells me there are lesions on my brain and spine, the last MRIs are unnecessary, call him to come in and talk. So there it is, I am diagnosed is less than 40 days of my most severe exacerbation. With that, I am grateful. Some people go years without really knowing for sure what is wrong. There are always suggestions to one disease or another, but without the lesions showing up on the MRI there are other tests I could have been through, AKA Spinal Tap - which made me cry at every thought.
Where I stand now? I am in the process of being approved by my insurance to start taking Avonex (This medication is used to treat multiple sclerosis (MS). Interferon is not a cure for MS, but it may help to decrease the number of attacks of weakness and slow the progression of the disease, Medterms.com). It, and all current medications for MS are given through an injection, self-served mind you. So now I am trying to wrap my mind around the fact that I will be stabbing myself once a week with a 1.25" needle into my thigh and giving myself flu-like symptoms (for awhile, anyhow). This is supposed to be a great medication for those that are newly diagnosed. Can help reduce lesion sizes and help prevent flare-ups. Though it has its own problems: may not work for me, depression is a somewhat common side-effect. But it can slow down the disabling progress of MS, and this is key. So I'm going to "man up".
What I hope to provide through this blog is an understanding of a young and newly diagnosed MS patient. I am 28, live in a big Midwest city, had no problems before the Lhermitte's Sign in Fall '08. Otherwise I'm very healthy.
This disease is different for everyone and though there is a general prognosis - the daily outcome can be very mild to very severe. Everything I've read online seems to be the worst, but everyone I've talked to in person has provided me with very optimistic ideas. Finding out the path I will take will only come with time, but my intentions are to be honest - in fear and accomplishment.
Current symptoms, unmedicated: Walking if completely fine, though I am unsure of my capabilities in heels. Sad. My 2 middle fingertips on my left hand are numb. The left side of my chest, from above to below breast has minimal sensation - though it is getting better. On occasion I feel my cognitive skills drop - use of wrong words or loss or word. But that is not significant or permanent. I have occasionally had the Lhermitte's Sign sensations in my upper thighs as well.
Current fears: Love and relationships. This disease holds my future in its hands. I instantly feel guilty for being interested in anyone for their sake. Who would ever ask a stranger if they are willing to take care of them when they are at their worst? "Hi, nice to meet you, I might be in a wheelchair in 7 years - want to take me out for dinner?" Knowing that I have a disease but not knowing what my future holds makes me vulnerable to heartbreak even more for I feel I'm breaking my own heart by forcing myself to feel guilty and feel I am not worthy. The realism is that true love will finds its way - but I'm figuring out if that even exists. There are other topics as well, interest and energy. Relationships need all of this and MS can provide you with a lack of both.
My intentions from here on out are simply to give thoughts, experiences and found materials on MS. From new symptoms, to an embarrassing fall, to laughing about it all. Another path from another MSer to read and compare their story too.