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Multiple Sclerosis Message Board


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Hi Jodi. Thank you for the very nice compliments. Let me tell you my abbreviated story. My MS symtoms came on very fast. Within 72 hours of my intial onset problem, my GP had me getting a CT scan, which showed abnomalities...it wasnt the pinched nerve which they expected to find. A Neuro was called in to look at my films (I was still there) and asked me if I would be willing to have an MRI right then and there. I was alone. I was afraid and no one was telling me much. BUT I liked this Neurologist. I had called on him professionally, he has one of the best reputations in the area and hes a likeable guy...so I said yes. After the test was complete, he asked me if I would like to meet him at his office (which was in the Medical office building attached to the hosptial) and talk. Of course I said yes. It was at that point that he was honest, and told me what he suspected...

Bascially everything happened really fast. He had me come the very next day to have a EMG, which is a nerve conduction test, to rule out Carpal Tunnel, remember all my symtoms were in my hands and fingers. He also had me do a EEG for my eyes, to rule out any kind of seizures- and finally a spinal tap, just to be sure there wasnt any infection going on in my brain. Fast forwarding only 24 hours later, he was sending me to an MS Specialist to verify what he already was 99% sure about. I took all my test results, my list of what had gone on over the past week and amazingly enough, it was during the history and physical that the MSspecialist's nurse was asking me questions that alot more came out. Yes, I was having balance problems. Id gone from wearing 4 inch heels to 1 inch heels and was basically living in flats whenever I could. Yes, heat did affect me. When I would get out of the shower and blow dry my hair, Id wind up on the bathroom floor in tears becaue I was confused, aggitated and felt like someone had been torturing me! All of these things started adding up....
The MS specialist concurred with the regular Neuro, and said yup. MS.

Long story short, I kept seeing the MS specialist the first 2 years, twice a year, but I was using this likeable regular Neurologist for my meds and for regular appointments and of course questions! Lots of questions. The regular Neurologist fortunately has one of the biggest MS practices in the area and he is well versed in all things MS, plus he is in my backyard and takes my insurance. After year 2 I realized this paying out of pocket for my MS specialist really wasnt doing me any good- he never said a thing that I didnt already know from my other Neurologist, and I eventually just kept myself on his patient list, visiting him about every 18 months. My regular guy handles all my meds and all my issues. I also go see the MS Specialist when he speaks, because he is one of the leading reserachers in MS on the East Coast. He often speaks at University hopsitals in the Philly and NYC area. (I live smack in the middle of two major cities).

You asked how I found this site. Youre going to laugh. Just like you, researching topics I came across it. There was a girl on here, who (much like me) had been dealing with MS for about 5 years and had alot of good information. I followed her posts, asked her questions and basically used her for a sounding board and personal lifeline for the first year. I think she saved my sanity and my mind that first year. I promised myself that if ever someone needed information like I DID, I would give back as much as I could- because this is virtually the only site Ive ever found where people really connect and give each other the benefit of their experience. I wanted to give back what I had gotten.
Over the years, there have been a few like you- people who keep coming back and asking things which I can help with. And, Im so grateful to be able to help. Ive seen others who I helped go on to help newbies- and it makes me smile because I remember when they were asking the same questions.

Im not superwoman, and I am seriously busy these days with Grad school a job which is eating up all my time and brain cells-and my family...but honestly, this is a "break" for me. When Im on the computer 6 hours straight trying to do a major paper, coming here for 20 minutes and posting about MS really gives me the "feel good" feeling that we all need to experience.

About the healthcare, long term insurance, etc. You have to weigh it out. I dont have long term care either....and I cant get it. I waited too long, no one will touch me because of the pre-existing condition- at least not the type of coverage I really want. I was able to find a policy which is affordable, but ony lasts for 6 years. From the time I use the first dollar, I have 6 years of coverage which includes a home care nurse, an assisted living facility or a nursing home. Being that this is the business Im in (dealing with patients in all 3) I know more then I want to know about this. Its scary. So, I just put one foot in front of the other and trudge on. I have life insurance, but thats virtually for funeral expenses and nothing more. Ive gotten my husband additional insurance, so that if something happens to him, Ive got some cash to keep myself afloat. You cant worry about it. Honestly, I know its going thru your mind now...but you cant fixate on it. May I ask what age group you are in? Im 43...a very young 43, but 43 nevertheless. Ive worked my butt off for the past ten years , starting college at the age of 30 and now doing my PhD at the age of 43, which I just started- and its a 3 year program. I have absolutely no desire to give into MS and yet, I can honestly say there are days when the screaming pain in my hands, the fatigue from running all day and staying up all night, really catches up with me. At that point, I try really hard to take a whole day and do nothing.

Youll see, this gets easier. I always tell people when you have been dealing with this for a full year, youlll look back and kick yourself. Its not the big deal that you thought it was once you get used to it. Finding out you have MS is all about how you handle it. Yes, its a series of acceptance. And, yes, there will be a few "why me' moments in there. And, youll eventually come to realize that you arent any different now, then you were a year ago, before you knew.

I know you are having some difficulty getting used to the idea of shots....and I was scared to death! My husband gave them to me for the first 8 weeks. Dont make that mistake. He was out one night and wasnt around to do it for me, and I freaked out, screaming and crying, postiive that if I didnt get the shot on time, Id be sick forever....I made myself sick. Then, I went up to the bathroom, iced my leg and jammed the shot into it! Ive never ever allowed him to give me another shot. Because I also travel for work, its important that I can take care of myself....I learnd the hard way that having the ability to take care of yourself, also gives you self confidence, and thats really important.

So, the nurse will come, from whatever company you choose, and will practice with you and youll see how easy it really is. Copaxone and Rebif are both sub-cutaneous, meaning "into the skin" as opposed to into the muscle, its easier that way, and hurts alot less! They will stay with you for a few hours that first time, and come back again and again until you "get it". And, we will all be here to walk you thru any questions until you are comfortable. Youll see, in a month, giving yourself a shot, will be like brushing your teeth. You just do it, and dont think about it.

Thats my story- and there is plenty more to share with you as things come up...but for now, just remember, 99% of this is mind over matter. It takes a strong person not to let this pull them into depression- but it takes a smart woman to realize that you arent any differnt then you were a year ago and there is nothing written in stone that you will ever progress beyond where you are right now! And taking meds, will give you that insurance you are looking for. Dont worry, it gets easier.
Nikki





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