Maybe it is...

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Shashi
Regular Member


Date Joined Jul 2006
Total Posts : 156
   Posted 1/16/2007 9:38 AM (GMT -6)   
just all in my head! I'm starting to believe what my husband has been telling me all of these months, that there isn't anything wrong with me, that I've invented all of these symptoms for God only knows what reason.

I had another test today and got another negative. I've been having tinnitus off and on for over a year in my left ear. It's gotten worse over the last two weeks. I went to an Ear, Nose, and Throat doctor this morning. He checked my ears and did a hearing test. All normal. He can't find a reason for the tinnitus. He said that it's probably part of whatever is going on with nervous system, and that they'd eventually find the cause, but it might take time. But all my husband heard was the word "normal." He thinks I'm just wasting time and money on these doctors. I'm starting to feel that way too!

I don't want there to be a major problem, of course. But I would like something to show up that can validate the problems that I've been having. Is it possible that the extreme fatigue, muscle spasms and spasticity, weakness in my legs, tremors, buzzing sensations, numbness and tingling, nerve pains, and everything else aren't real? Am I a taco short of a combo platter? Has my cheese slipped off the cracker? (Don't answer that!)

I especially wonder, since for the last few days, I've felt so much better and am able to walk almost normally again. The fatigue is gone for the most part, as is everything else but the tremors. I feel better than I have in months. When I feel this good, it's harder to remember all the bad symptoms that I've had since May.

I've honestly thought about just giving up the quest for answers. Maybe there aren't any answers because there isn't anything wrong with me. But it sure felt real when it was happening. How on earth (and why) could I make up stuff like "The Buzz" for heaven's sake. And what about the messed up reflexes in my legs and the present Babinski in my left foot and the abnormal EVP on my left leg? Those were real enough, weren't they? Or did I imagine them too? I'm just so confused and I don't know what to do. Do I keep pushing or do I just say enough is enough and give up? If I stop taking all the meds, what will happen then?

Why on earth is this happening?
Hugs,
 
Lisa ~
 
Living in Limboland!
 
Negative MRIs + Negative LP + Positive symptoms = A lot of confusion + A ton of frustration!


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 1/16/2007 10:37 AM (GMT -6)   
Hey Lisa

I know exactly how u feel, but even with all the neg and normal test results u've gotten, u also still know something is going on. U've seen some abnormal results and u KNOW it's not as it should be. I sometimes think the thing to do is to just sit back and forget it all myself. It is at those times that i am not paying such attention to it, that i find, yes, this is real. The symptoms are there for me even when i try to ignore and forget it all. I feel sometimes i'm giving it too much of my time. I'm convincing myself that this is a real prob when if i'd just let it all go and try to move on that it wouldn't be such an issue in my life. But as u said, the symptoms are there and u don't just make this stuff up. No, i don't think it's all in u'r head (unless u have a lesion there! ;) ) and even tho u can't find answers just yet, i don't think u should give up either. Maybe we should both back away some. U'r symptoms seem much more prominent than mine, so maybe that's not an option for u. For me, however, it is. I'm much better most all days than i was not many months ago. Sometimes if we can just not focus on it so much...even if it's in our faces...if we can just give it DUE attention rather than stopping everything to 'notice' this thing or that thing....maybe at least we'll have some normalcy in our lives. For us and our families. I wouldn't stop taking the meds. Keep taking all that are helping u and keep making note of u'r symptoms as u have been, but let that be the attention u give all this daily. I know that's easy for me to say...u' do have some hard symptoms to deal with...but if u can, make u'r life beyond this...not about this. Take good care of u'rself and don't let this consume u.
rhonda
Co-Moderator, MS Forum


booboobum
Regular Member


Date Joined Jan 2007
Total Posts : 135
   Posted 1/16/2007 12:39 PM (GMT -6)   

Lisa,

 

I know how you feel too. I am also in limbo and I am classified as the "office hypochondriac" - I laugh along, but it's very frustrating. Keep taking the meds if they make a difference and keep seeing the dr. Take it slow and try not to stress over it all.

 

Pam


shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 1/16/2007 2:10 PM (GMT -6)   
Hi Lisa,
I hope for you and all the "limbolanders" that your answers come quickly.  All diseases can be very frustrating and so all I can say is that you have to try to live with your symptoms the best you can because even with a diagnosis they probably won't change. 
 I am living in GI limbo land right now and I am just as frustrated, feeling the docs aren't listening!  Take care and try to relax and cope day to day.  You sound like you are very accomplished in your career, that is awesome, hopefully that helps to distract you from all the aches and pains and weirdness of these illnesses.
 
Hang in there! :-)
Michelle ><>
 
The choices you make today will determine your tomorrow.


dvmtobe
New Member


Date Joined Nov 2006
Total Posts : 19
   Posted 1/16/2007 6:08 PM (GMT -6)   
Oh hon, I am so sorry.  I have been reading many of your posts since I found this forum and I feel close to you somehow.  I, too, am in limboland and have been for 2 years now.  I, like you, have a negative brain MRI, negative LP and positive symptoms.  I have been diagnosed with ON and I have lesions in my spinal cord but I have actually been told by my neuro that this might all be in my head!  It doesn't make any sense to me.  I actually haven't been posting lately because I have been trying to grapple with this whole idea and sort things out.  I will share with you what I have done:
 
1.  Make a list of symptoms.  I determined that the ON had to be real because it had been diagnosed and I had a daily reminder.  For you, the positive babinski, altered reflexes and abnormal EVP are proof that the symptoms you have in your leg are "real"...something is going on. 
2.  Set the list aside and try your darndest to relax and not think about all the possible things that could be wrong with you and that you have all these problems (like Rhonda suggested).  I tried to throw myself into my work, my family, christmas...things that would distract me in order to do this.  The chances are pretty good that the "real" symptoms will show themselves even in the face of living a normal life.
3.  Go back to the list and try and sort out what you've determined for yourself are real (this likely will be most of them, I willing to bet because you don't sound like a person who has "slipped the cheese off her cracker").
4.  I then had to repeatedly tell myself that these symptoms are real and accept them.  Now I am keeping a little notepad of how, when and what the symptoms feel like.  I have actually found that the list is narrower than I initially thought and have attributed some of the things I was/am experiencing to stress.  Now, though, I have a concise list to present to a doctor along with possible things that exacerbate these symptoms.
 
This is a slippery slope I think though because I would hate to leave something off that may be key for a diagnosis.  So, I still remark on the things I think could be stress related so that I can report those as well. 
 
I have to admit that I am taking the watch, wait and see approach currently.  I am following up with my optho appointments and my GP and will have repeat MRIs done.  I am also taking my medication (neurotin and synthroid).  I am practicing good self care including eating well, exercising and sleeping adequate amounts.  I am also seeing a counselor to help me with all of this and just to talk to.  My husband doesn't quite think that I am nuts, but he doesn't like to talk about it.  I don't know if it scares him or he actually does think I am crazy, but either way he won't really discuss the situation.  FYI my counselor doesn't think this is in my head either :)
 
All we can do is keep going.  Keep fighting.  I now actually have accepted that, yes there is something wrong with me and right now they can't tell me what it is.  It is either going to get better and go away or some other symptom will come about and they will finally tell me what it is and treat me. 
 
I don't know if this has helped.  I really just wanted you to know that you are not alone.  All the best to you!
 

LadyEMT
Regular Member


Date Joined Feb 2006
Total Posts : 109
   Posted 1/16/2007 8:49 PM (GMT -6)   
Shashi,

You made me cry. As I read, It was as if you lived my life not that long ago. You need to hang on. Some how you have to keep the strength and willpower to keep going. I know that it is hard to believe in yourself when all around you people think your nuts. I would sit there at night, and ask myself do I feel these things happening to me? Maybe I am crazy......... You are so NOT alone.

There is a light at the end of the tunnel, the fog just hasn't lifted yet.

Let us know how you are doing.
Bonnie
Life Can Be A Challenge.... 
 Expect The Un-expected....
Live Everyday As If It Were Your Last.

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