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dottie82 posted:
Hello everyone. I am new here and I was just diagnosed with MS August 4th, 2012(Saturday) at age 29. When I had gotten the news that this is what I have been experiencing, 1 week before I had lost my cousin. She was fighting a battle with cancer and all of the extreme tests and experiments to help her get well gave her a heart attack. While I was still trying to process the fact that she passed, I got a phone call from my Dr. office and the nurse told me I have to come in asap to see the doc because the MRI showed that I have lesions on my brain and I have MS. I asked her, "can I come in next Friday?" she said "no, this is kind of serious, can you come in Tuesday?" I replied "yes." When she said I had MS I didn't know what that meant, I really didn't care, I had a lot going on and I was also moving out of my place at the time. MS whatever. Well when I finally had a moment to sit down and breathe, I did some research and *BING* it all made sense. I went to see my doc and he told me again what was seen on the MRI and he told me "there is nothing I can do for you anymore, you are a special case." That may sound harsh but I appreciate him telling me that instead of trying to figure things out aimlessly. He referred me to some neuro docs and wished me well and the journey begins. Now in 2011 I had symptoms such as the headaches and the left side of my face tingling, but I just shrugged it off and kept going. In November of last year I became constipated and I thought it was what I was eating but I didn't eat any weird foods, I was regular all my life. The beginning of this year, headaches were everyday, the back of my head felt heavy, face would tingle all over, speech would slow down and sometimes it wouldn't come out. I went to the ER March of this year b/c I thought I had a stroke. I explained everything but it was no stroke, it was nothing. I was prescribed Ibuprofen for the headaches and with a question unto myself, "what is wrong with you girl?" As time went on and the weather became warm my symptoms exploded *BOOM* so much to the point that people thought I was just a bucket full of exaggeration. I still have headaches, brains slows down for about 5 seconds, scalp feels numb, left side of body tingles, hoarseness, I see spots when too much light is in view, weight loss(loss 10 lbs. and I do eat), numb hands, arms numb and cramp at times, left hand itches on the inside(thought I was bit by something), left hand jumps on its own, legs numb, feet numb, bones feel painful(probably from all the weight I lost), constipation, forgetfulness, depression, TIRED all the time, legs get weak when standing too long, fell down stairs 3 times, balance is off, spine feels like electric runs through it also my lower back when I bend, sleep maybe 4 good hours a night(unless I take a muscle relaxer), spasms in sleep and many more. Some of these symptoms are everyday and they have no scheduled time to show up, but it's like my brain let me know when they are about to happen. It all trickles down from my brain to my feet and when the brain slows or freezes or whatever, I know to pace myself b/c anything is possible. I went to the ER in July of this year, told them all I experience and they did a CT scan and the scan said I had white matter on my brain. They referred me to a neuro doc and they didn't say why even tho they referred me to a neuro doc. I thought, "neuro doc for what???" I found everything out from the MRI and now I am seeing the neuro doc of my choice. My 1st visit with her was last week and she sent me yesterday for another MRI w'wo contrast. I go on the 11th of this month for a EEG. I am taking meds for constipation, sleep and spasms. I have a 3 year old son that I muster up energy for b/c he needs me. The only thing that is keeping me at peace is knowing that this is not a disease unto death. I haven't cried about it, heck, I don't know what to feel. I take it day by day slowly. Any suggestions on how to deal with this? Thanks:)
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Rory26312 responded:
Hi Dottie

Welcome to our little group but sorry you need to be here. Your Ha-Ha moment is not unusual after diagnosis. A lot of people actually feel relieve because the diagnostic process can take so long.

The most important thing right now is to find a neuro or MS care center that will work with you on a second opinion and then on a treatment plan .Once that has been establised then you can take a deep breath and assess where you are.

As you say yourself take it day by day for now, do not be afraid to ask for help as "pushing trough" can cause more promblems in the long run.

Come back and let us know how you are doing fell free to ask,vent tell a funny story or joke.

Hug that young fellow and "breath"

Rory
 
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dottie82 replied to Rory26312's response:
Thank you so much Rory. I go back to my neurologist on the 11th and she will go over the 2nd MRI I got done last week and that one was with and without contrast. The thing that I am sort of afraid of is the treatments, I don't know how they will agree with me. My son is such an encourager to me and he rub my back when I am in pain or feeling down, I couldn't ask for a better child. I am so glad I found this community because just talking to somebody about how I feel they don't understand, but I know that I can talk to someone who I can relate to with this. I don't want sympathy from anyone either, that is why I just keep silent about it all, but I will surely ask questions from you all. I really appreciate this site. One question, what is "pushing trough"?
 
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Rory26312 replied to dottie82's response:
HI again Dottie

I mis-spelt that by "pushing through" I mean trying to keep going when we know we should take a break or have a nap. We all do it once in awhile but it can cause promblems in the long run. I know this will not be easy with a three year old in the family.

As to treatments the more establised ones are what we call the CRAB's .All are injections so the can seem scary. Copoxane Rebif Avonex and Betaseron the have been around for fifteen plus years and there track record is pretty well establised .

Of these Copaxone is the best tolerated with fewest side effects but it an every day injection under the skin.

Rebif and Betaseron are from a class of drug called an interferon
each is an every other day injection under the skin.

Avonex is another interferon injected once a week into a muscle so there is a longer needle needed allthough the have a new system just launched which hopefully will be easier to handle.

All the interferons come with side effects including flu like symptoms after the shot and severe depression and possibly liver damge so the have to be monitered very carefully. Many people here say the cannot give up a day of the week to the flu like symptoms when the have a small child.

Avonex is the one I am on since my diagnosis ten years ago and I have been very lucky in that I have no promblems with side effects.

There is a once a month infusion called Tysabri and there has been an pill called Gilenya released recently with more to come . I do not know much about these so hopefully your neuro or someone else on here will explain more.

Remember this choice is yours to make or if you choose not to treat at all and do not let anyone bully you into taking a treatment that does not suit you.

Sorry so long

Rory
 
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dottie82 replied to Rory26312's response:
I agree with you about taking naps and since I was diagnosed I see the importance of a nap more than ever. I am able to take a nap when I need to. All my life, as far as I can remember I had to take a nap, I could not function without one and if I didn't take one then I would become moody and disgruntle. My family always asked, "why does she sleep so much?" When they saw how I was without one they changed their tone to, "let her sleep, she needs it." This makes me think now that I may have had MS for years. Throughout my life I have had some other symptoms too but they didn't last like these I have now.
No apologies Rory, I really appreciate all the information and I would rather hear it all from someone who had to make all of these decisions themselves before. That is why I joined this community because hearing peoples personal experiences, and not just going off of what the dr.s have to say, is enlightening. All of those treatments sound very fun, and I know they are created to help, but I am kind of leaning toward no treatments. I don't know yet and all of the description you have provided me with of these treatments will help me choose better once I do decide to. I know that everyone's dealings, symptoms and pain are different and some of the stories I have read of others that have MS really hurts my heart. The one thing that is keeping me from losing my head about all of this is that this disease is not unto death and it could be something much worse that what it is. I am grateful for life and if I have to live life with MS, with or without treatments, then I will live it to the best of my ability.
 
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Ta_Da responded:
Hi Dottie,
I too am recently diagnosed - June 1, 2012. I was overwhelmed at first just trying to deal with the news and with the extreme symptoms of my first big flare. Eventually, my body settled down and I became accustomed to a 'new normal.'

I recently started my third month of Rebif treatment and so far so good. The people at MS Lifelines have been so good to me. They call periodically and seem to care about me.

My biggest issue of late has been dealing with the large group of medical professionals that are now part of my life: Primary care Dr,, Neurologist, Spine specialist, physical therapist, and now Neuropsychologist. I told my neurologist that I felt like I was being pulled in too may directions and he gave me what I feel is some good advice. He said that my primary care dr is my chef! He knows me best and I can see him quickly if I need to. The Neuro is the sous chef and all the other doctors support him and the chef! As weird as this sounds, it really helped me.

Recently, I started going to therapy to learn biofeedback to deal with pain that comes from my spine. A lesion is mimicking a bulging disk and created some nerve issues in my arms and shoulder.

I've been a fighter (not literally) all my life and I sometimes get angry that I cannot fight some of these issues. Oh, I can fight but the fight is not healthy and eventually doesn't get me to a calm place. I have to learn to finesse my way through all these issues. I never thought I was the type to need therapy but my Neuropsychologist have helped me tremendously!

Let me know if I can help you. My sister in law has MS too and she has been great to talk to. Sometimes you just need someone who understands where you are coming from.

Oh, I find this helpful too: I try to write down three things I am thankful for each day and one fun thing that I've done. I keeps me focused on the good things in my life!

Take care,
Nancy
 
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Rockyman115 responded:
Also diagnosed in May '12 and new to this site. I hope I am putting my response in the right place. My story: I had just returned from a beach getaway and thought traveling was causing my issues. Within three days I became very numb on my complete left side and was losing hearing in my left ear. My Dr knew right away and sent me for the MRI. The ER doc told me I had MS and said she was sure. I was stunned! My wife is a nurse so I have a little more info than most. My follow up with Neuro was 4 days later. I thought I was going to end up in a nursing home. My eyes weren't tracking, I couldn't think straight, and by balance was off in addition to the increased numbness. I live in an area that has an extremely high rate of MS, but only recently moved here ( Denver). I am lucky to be in an area that has the experience. I say all this to let you know the confidence of the med teams here and give a picture of how bad things were. The neuro Dr treated the swelling with 10 times a normal dose of steroids. My wife could not believe I could still sleep so much. I was bad! I was able to see my daughters face clearly within 4 days. AMAZING! I continued to improve over the next couple months. I did start the Rebif, but did not like sticking myself and felt a little worse overall each week. I stopped it and went a couple months to see how I would feel. I can now tell I am getting slightly worse so I signed up to the Tysabri. I will start it in about a week. Reading about it is alarming. I normally don't like taking any medications, but I have a friend with MS 10 yrs fighting. She said it is not worth the risk to nothing or to try only natural suggestions. Took me a while, but I think I agree now. I had one small pity party that lasted about 30 min. Then I realized I can be depressed and be alone or live life to the fullest and do it with the ones I love. I do spend more money now, but I don't want to risk no being able to later. I live near the rocky mountains and get up there as much as I can. I hike, snowshoe, mountain bike, ride motorcycles, even tried paragliding and just walk taking in the fresh air and sunshine. I love life and want to make the most of every moment. I don't let people feel sorry for me. I tell them they can do that later. Some people never have severe issues and I hope that is me. Who knows? I do have pretty strong faith as well which helps. I hope this makes sense.
Wishing you the best,
Todd
 
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doggsbone replied to Rockyman115's response:
good to meet you rockyman sounds like it has not been easy for you, little jealous you are in Denver{ i miss it}. Glad you are in an area that has the expertice you need. Dont ever give up you can have a full wonderful life even though you have MS.You are a inspiration to all of us thank you


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