Thursday, January 21, 2010

Living with MS Means Living with Daily Symptoms and Pains

Living with Multiple Sclerosis Means Living with Daily Symptoms and Pains. It is not something we like to know and it is hard to accept at times. I have been dealing with symptoms and pains for a few years now. Some come and go as they please and some are with me everyday. The past few months have been really rough with balance and dizziness symptoms, fatigue, and the pains in my legs have become worse. I find it interesting and frustrating at the same time to know that when I called the Doctor regarding the pains in my legs. I was told that I should go to see a psychologist to get help accepting my MS.

Now some of you have gotten to know me very well over the last few years and some of you are new to learning about me. It blows my mind that someone (my Doctor) of all people would think that I haven't accepted my disease. I consider myself very accepting of the disease and the daily pains and symptoms that go with it. However, sometimes the pains are very bad and continue to stay bad or get worse and I thought maybe, by calling the Doctor, they would have some ideas to help with the symptoms. My Doctor said " you have MS you will always have symptoms and pains and it will progressivly get worse, that is MS".

I get frustrated because I take a lot of pride in accepting this disease and try to help others accept it. This same Doctor (not my Neuro, it is my G.P.) knows me well enough to know that I don't call her nor do I go visit her unless she demands it (1 time a year). So if I am at my end and am asking for help, you would think she would keep that into consideration. I want to ignore her request to go see a psychologist because acceptance is not an issue I have.

For the last few weeks my legs have hurt so bad. I sent a message asking if there was anything I could be doing because, by the time I wrote her I was in so much pain. Oh yeah, I may have mentioned that I was ready to amputate both of them to help reduce the pain. Now I know that amputation is not the answer because I would not be able to wear the cute jeans I just bought at the store but I wanted her to know how bad it was getting.

Its crazy to me how many Doctors you end up having when you are diagnosed. Then they push you to Specialized Doctors when a part of the body is getting messed up. You go to see the different Doctors, have the test run and then none of them talk to each other. So I feel like I get pushed off on to different doctors but the results dont get relayed. So you are basically having to start from scratch and explain what each Doctor tested for and what they feel should be done. Only to have the initial Doctor disagree and say NO. Isn't that why they send you to Specialists???

So I am going to sum up really quick where I stand.. When I am forced to go see the Doctor and I finally come to see them. When they ask me, "How is everything going"? I am going to say "Fine". This way I dont get shoved off on to other Doctors and waste my time. I won't be told, "deal with it...you have MS". I won't be put onto medications that may or may not be helping. If they are helping, are they only helping contradict the side effects from the other medications? I will start looking into natural products to help with the symptoms and just try to do the best I can each day.

Oh, and I have been asked by many of you how the MRI went. I only had the MRI of the brain done. There have been no changes so I am very happy with that. It does leave me questioning how it is possible to have no changes on the Brain MRI but my symptoms seem to be worsening??? HHhhmmm It is a mystery to me.

11 comments:

Kdavis said...

I feel for you. I am having the same issues. I have been thaving terrible joint pain, and have been told by two doctors that it is in my head. They said i should go on an antidepressant and try to cope better. How am I supposed to cope better when I can hardly move some days. It is so frustrating to be dissmissed, because I already have a dignosis of MS. I wish someone would look at me instead of my dianosis.

Kdavis said...

I feel for you. I am having the same issues. I have been thaving terrible joint pain, and have been told by two doctors that it is in my head. They said i should go on an antidepressant and try to cope better. How am I supposed to cope better when I can hardly move some days. It is so frustrating to be dissmissed, because I already have a dignosis of MS. I wish someone would look at me instead of my dianosis.

Anonymous said...

My daughter has very bad pain in her legs and feet on a daily basis. Her neurologist understands and is very supportive in trying to help alleviate the pain. I really can't believe some doctors can be so insensitive to the pain people with MS have. I hope the days ahead will be better. My thoughts and prayers are with you.

Jan

Janine said...

Hi, my struggle with Neurologists is never ending. If you want to read about what I've gone through and my strategies; http://grace2wheelmydayswithms.blogspot.com/2009/03/story-of-my-ms-are-some-neuros-aliens.html
Sorry for the long URl. Love to talk more about docs some time, grace2wheelmydayswithms.blogspot.com

Courtney said...

It is so tough to "ignore" the very real daily symptoms that MS brings even though that is what it seems like your doctor is suggesting. I haven't read the rest of your blog yet, so I hope I am not recommending things you already do but I know the biggest help for me has been yoga. I was actually featured in a yoga dvd for MS patients that might be helpful. It's free to order and I wrote about it on my blog: http://www.therideproject.com/yoga/724

Will catch up on more of your blog.
Take Care!
Courtney

Herrad said...

Hi Tara,

Please come by my blog and pick up your award.
Love
Herrad

Dabble and the Mad Sow said...

Alas, I think docs like antidepressants because we go away and don't bother them. There are medications for leg spasms, but pain seems to be a certainty....
I found doing exercise (not too strenuous) really helps my overall leg function and my mood as well. And it's better than drugs....;-)

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kmac1 said...

Hi there. I def think you sound quite positive and have accepted this illness. I visited your blog today to get more info on what on earth could be wrong with me. I'm awaiting an MRI... this Sat in fact but as for docs and Neuro's... they just seem to treat you like a number. I'm a single mother to 2 very active little girls, both under the age of 4. All I've ever wanted to be is a mother and now I can barely bath them nevermind run around with them. I have strange feelings in my left leg, not pain but definitely muscular, pins and needles and heaviness, my legs are very restless also. My Doc recently suggested I have ME/CFS, but again, I have absolutely no pain whatsoever, just an annoyance in my left sided limbs..!! Can anyone tell me how MS usually starts. I began to feel dizzy in Oct 09, it went away until Feb this year and came back with vengeance followed with head pressure, nausea, heavy limbs and absolute exhaustion. Hoping someone can help, I'm so afraid at the moment. x

Living Day to Day with Multiple Sclerosis said...

Kmac1 -
I am so sorry you are going through this. CFS is more super fatigue, the symptoms you are explaining sound more like MS or Fibromyalgia. Either way Autoimmune disease can take forever to get diagnosed. It is a very long waiting game and battle. some people get diagnose right away because the markers show up in the tests. Others, don't and have to wait months to many many years before figuring out what is wrong. I would love to talk to you and help you, feel free to e-mail me and we can go further in this discussion. If not, be strong and you know your body better then anyone. If you know something is wrong then be persistent and find a doctor you trust and are comfortable with.
Tara
cccanes@gmail.com

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