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eiubee83
New Member


Date Joined Sep 2006
Total Posts : 1
   Posted 9/24/2006 12:24 PM (GMT -6)   
Hi everyone - I am so glad I found this board.
 
I'm 22 years old, and I have been seeing various doctors about problems that I have been having, such as tingling/numbness in arms and legs, back and neck pain, constipation, urinary problems, losing function in my right leg (I fell twice), dropping things (like photos or a fork), walking with a limp, muscle spazms, blurred vision, MAJOR dizziness (for two days!), etc.
 
I am currently in graduate school, and I have seen numerous doctors on campus and in the community, as well as a couple of ER trips.  I was diagnosed with Bipolar Disorder when I was 16, and one of the doctors had the nerve to look me in the face and tell me that all my problems were surrounding the bipolar disorder, and that I needed to go see a psychiatrist.  I couldn't believe it.
 
After being SO tired of people telling me that these syptoms were all in my head, and after I fell, my parents (Whose insurance I am under until next June when I get married) set up an appointment with a doctor they go to church with (which is good, becuase I was getting ready to give up on doctors and just deal with the symptoms, which would have sucked).
 
I went to this doctor, and he was amazed that people weren't listening to me.  He said that the symptoms that he saw in the office while I was there and the symptoms that I was describing were symptoms of MS.  I had an MRI on Friday, and I go to the Neurologist on Monday.  I figure something must be going on because I saw the doctor, got an MRI, and am seeing a neurologist all in the span of 6 days (which I know is unheard of).
 
I guess that I just want to vent a little because I am upset that no one was listening to me, and I could be dx with this in the near future.  My guess is that the neuro is going to say what they all say - it could be MS, but we have to wait and see.  I HATE the waiting game... sad
 
I don't know what is scarier - having MS or NOT having MS...I just want to know (I am sure that many of you can relate). 
 
Any advice about what to ask the Neuro would be helpful - I just feel so alone in this right now.
 
Thanks for listening...
 
Megan
 

shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 9/24/2006 12:49 PM (GMT -6)   
Hi Megan,
Welcome to HW.  I am so sorry you are going through the waiting game...and so young!  Most of us here have either been or are going through the "wait and see game".  I pray you will get some concrete answers tomoorow.  Please let us know.
 
Remeber you are not alone in all this.  My advice to you is write down all your symptoms on a daily basis and take them with you to your appt.s  If you can think of ones you've had since you last sam him, write those down as well.  If he cannot give you a diangnosis right now ask for medications to help with symptoms.  Hang in there! :-)
Michelle ><>
 
Don't be so busy doing good
that you neglect to do what's right!


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 9/24/2006 8:36 PM (GMT -6)   
Hi Megan

Welcome to the forum. You are very young to have to deal with these issues and I hope you get your answers as quickly as possible. MS is an exclusion based illness since there are so many things that can cause similar symptoms so it can take some time for them to watch you and see what occurs, run tests, rule things in or out. Try not to feel alone, we have many people here in the same boat of limbo as we call it and we'll try to help you along the way til they figure out whats wrong.

Shellypoo gave some very good advice. In addition to that you might ask what kind of tests should you be expecting, what things need to be ruled out, and what needs to happen for you to get a dx. Let us know how your appointment goes tomorrow, and when you get the results of the MRI please let us know that as well. Take care and talk to you soon!

Kimber
 
Allow Healing Well to continue to help others, clink link for details

snowdog
Regular Member


Date Joined May 2006
Total Posts : 137
   Posted 9/25/2006 12:11 PM (GMT -6)   

Megan,

You will find that you are not alone, as your story is one that most of the forums
dealing with MS, see everyday.

Most of us have been through what you are going through, as have many that were waiting for a DX and finally got one that wasn't MS.

Unfortunately Megan, there is no easy, straightforward answer to the dilemma. Because of the nature of autoimmune diseases, they are difficult to pin down. Some doctors and other medical community members are just ignorant of the ongoing facts of MS, some are gun shy to make a decision because "MS" seems to be the "in" disease for some people. My Neuros have told me more than once, how people come in for a first visit and on the second bring papers for disability, or they come in once and then never come back, while telling their employers, friends and family that they have MS. Other medical staff members are knowledgeable, sympathetic, and eager to help prove or disprove, but you may feel they are not doing enough, while they are looking for some current medical criteria that will verify your symptoms.

The other problem is the disease itself. It is so unpredictable. For some it may come once and disappear for years or even a lifetime(but even when gone, it is not cured...just laying dorment for awhile. For there is no cure, nor does it ever leave once triggered) and for others it comes like a run away freight train destroying everything in its path.

There are only so many tools a doctor has at his disposal to prove or disprove, this disease. People often appear to have MS, but end up with Lupus, or Lyme or some other disease that has the same symptoms. One Neuro told me that many people think that MS covers every autoimmune disease or brain related problem there is. Nothing is further from the truth.

I will bore you a bit longer, and tell you that I have been where you are now. Frustration was number one with me and patience was not a word I wanted to hear or deal with.

I know this not what you want to hear, but there are some members of this forum and others that have been waiting for a year or two or even more, dealing with symptoms and discomfort, and yet......STILL have no answers.

I was told by my first encounter with a neuro, that it was my blood pressure pills. He didn't even look at the MRI. The second was a bit better, but insisted that physical therapy would take care of my problems. I still was not diagnosed. I finally went to a neuro that thought the others were idiots, put me through a gambit of tests, and even when she was absolutely sure I had MS, she told me she wanted another opinion. Went to her suggested other doctor and was told that there was no doubt. That's when I told them.........I didn't have it. There had to be something else. Finally after almost 7 months of tests, doctors and more doctors and more tests........I have MS.

Many things will be suggested to you but I will tell you from recent experience that
knowledge of what MS is, what they look for, and asking on this forum and others is
one key, while another is not to be shy with medical people. Remember that it is your body; you do know what it is trying to tell you, and if people will not listen.....find others. Ask you’re local MS society, foundation, or whatever is available in your city about who they recommend. They keep lists of MS specialists.

Be open minded. It could be any number of diseases.  Most of which are as difficult as MS to dx. If you have to wait for an answer or tests or whatever, ask about medicine for the symptoms. There is no reason you cannot feel better, or relieve some of your anxiety by getting help with the symptoms. And you don't need a neuro, or an MS specialist to help you with your symptoms. Your Family GP is as good as any.

Remember that we all vent, ask questions, and respect each other on this forum and it is made a HUGE difference in my life. I was told early on by some of the members of this very forum that everybody will tell you how bad they feel for you or that they understand... from friends, medical people, to your closest family members.......but the truth is, they haven't got a clue and really will never understand.

I am still in denial, still angry, and still determined to not give into this disease as I would any major illness. I wish you the best Megan.

 


bird4713
New Member


Date Joined Sep 2006
Total Posts : 2
   Posted 9/25/2006 4:10 PM (GMT -6)   
Megan, do not be afraid because fear is a mighty tool used by the enemy to keep you down. I have had MS for 20 years and am still walking and talking and laughing. I would say get on one of the ABC drugs right away because it will hault any further damage. I am on Copaxone but waited 10 years before I even started using anything. I am now using RELIV and am having wonderful results, this is not a cure but the right fuel for your body and it is making a big difference in MANY people, so check it out, there may be a foundation city near you, go to a Tues night presentation and say you are my guest. God has not given us a spirit of fear, but of power and of love and a sound mind. 2Tim 1:7 I am not one to quote scripture but that came to me when I read your cry for help.
Be blessed Megan you will get through this and you have come to a great place to get some answers to you seemingly silly questions, they are not silly and know there are others out here in cyberspace to offer assistance, you can also go to MS Watch.com they are very helpful and have far more answers than I do.

colee1979
Veteran Member


Date Joined Jul 2003
Total Posts : 667
   Posted 9/26/2006 9:07 AM (GMT -6)   

Hi Megan,

Welcome to healingwell. I joined HW while in a massive flare with My Ulcerative Colitis. This is a great place to have a shoulder to cry on,someone that understands what your going through. I am new to this part of the forum..as I have just gotten my dx of MS in August. Things happened sooooo quick that it still has my head spinning. I have has syptoms relating to MS all the back to when I was 19 and lost vision while driving. I have seen many doctors,one being a rhematolist because I couldnt walk...but he never tested me or thought MS. Finally this past summer when the numbness and tingling started I freaked out and thought I was having a stroke. So I went to the ER...the doctor had the nerve to ask me if I was taking diet pills,because that could be MY problem. OMG,how upsetting! So,when he said he would do a cat scan to "ease my mind" I refused! I went to my PCP,whom I trust,and he scheduled the MRI,less than a week later I was seeing a neurologist and had my spinal tap scheduled. From actual start to finish(from ER visit to actually being dx with MS) was less than one month. Things have been scary for me...I cant get the fear out of my head...I have two auto-immune diseases and all I think about is when will I get another one? I think the fear all comes from being newly dx and it is normal. I was terrified when I was dx with UC...but 4 yrs later I hate the disease and it will NOT defeat me! I havent quite gotten to that point with MS yet...but I know one day I will...I have two healthy beautiful children and a great,caring Husband...and I LIVE for them...this is NOT who I am as a person...and this is NOT who you are either...we are all so much more!!

I wish you the best of luck on your visit to the neurologist. Remember to right down ALL of your syptoms,as silly or insignifigant(sp?) they may seem. Make the doctor listen to you,give him/her the list and just take one step at a time. Good luck,hon.


 
~Nichole~
 
Dx with Ulcerative Colitis September 2002
Dx with Multiple Sclerosis August 2006
 
 
 


shami86
Regular Member


Date Joined Sep 2006
Total Posts : 128
   Posted 9/29/2006 1:36 PM (GMT -6)   
GET CHECKED FOR LYME....its sounds like thats what it is
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