How can there be any doubt?

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Shashi
Regular Member


Date Joined Jul 2006
Total Posts : 156
   Posted 2/25/2007 12:53 PM (GMT -6)   
I was just filling out a questionnaire for the sleep study evaluation appointment I have on Tuesday. One of the questions on the history asked for chief complaint. I wrote the following:

extreme fatigue, numbness, tingling, buzzing sensations, tremors, muscles spasms, muscle stiffness, muscle weakness, tinnitus in left ear, dizziness, heat intolerance, slurred speech, cognitive problems, memory problems

Then under the review of systems - neurological section, I checked off the following:

dizziness, concentration problems, memory problems, lethargy, speech difficulty, nausea, trouble with smell and taste, blurred vision, other visual changes, facial numbness/tingling, tinnitus, vertigo, hoarseness, weakness - arms, weakness - legs, numbness-arms, numbness - legs, paresthesias, stiffness, clumsiness, pain, poor balance, poor coordination, trouble walking, and incontinence - bladder

After reviewing what I'd written, I'm wondering how on earth there can be any doubt as to what I have! Every one of these dang symptoms are MS symptoms.

And while my doctors dawdle around, looking more at the mostly negative tests than at me as a person and at my symptoms and their effect on me, I'm just getting worse and worse. This week I've been too exhausted to even move and can barely walk because my legs are so weak.

How frustrating! What does it take to get off this danged Limbo Island?!!

(Sorry for the vent. I try to be patient, but when I see things going from bad to worse, it's hard to sit by and wait for whatever. Thanks for letting me get that off my chest.)
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 2/25/2007 1:04 PM (GMT -6)   
Hey Lisa

Boy!...what obvious symptoms! Yes, i guess there still may be other options, but like u, i wonder how much clearer it would need to be. Hang on....i'm sure u must be close to a dx and packing u'r bags for a move from the island. U can even use my yacht to move! ;) Take care and try to feel better...in time...tho maybe more time than u want...it'll all be clear to the docs too dn u'll get some answers.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 2/25/2007 2:23 PM (GMT -6)   
Shashi said...
I was just filling out a questionnaire for the sleep study evaluation appointment I have on Tuesday. One of the questions on the history asked for chief complaint. I wrote the following:

extreme fatigue, numbness, tingling, buzzing sensations, tremors, muscles spasms, muscle stiffness, muscle weakness, tinnitus in left ear, dizziness, heat intolerance, slurred speech, cognitive problems, memory problems

Then under the review of systems - neurological section, I checked off the following:

dizziness, concentration problems, memory problems, lethargy, speech difficulty, nausea, trouble with smell and taste, blurred vision, other visual changes, facial numbness/tingling, tinnitus, vertigo, hoarseness, weakness - arms, weakness - legs, numbness-arms, numbness - legs, paresthesias, stiffness, clumsiness, pain, poor balance, poor coordination, trouble walking, and incontinence - bladder

After reviewing what I'd written, I'm wondering how on earth there can be any doubt as to what I have! Every one of these dang symptoms are MS symptoms.

And while my doctors dawdle around, looking more at the mostly negative tests than at me as a person and at my symptoms and their effect on me, I'm just getting worse and worse. This week I've been too exhausted to even move and can barely walk because my legs are so weak.

How frustrating! What does it take to get off this danged Limbo Island?!!

(Sorry for the vent. I try to be patient, but when I see things going from bad to worse, it's hard to sit by and wait for whatever. Thanks for letting me get that off my chest.)

You might want to go back through your list of symptoms and separate them into two categories: 1) those that can be tested for, observed by others, that are consistent and demonstrable and proveable..
 
2) those that I personally experience but which can't be tested for.
 
Things like strength, balance, bladder problems, vision problems -- can all be tested for. If the doctors have tested for them...but haven't found them...then, at least in their eyes, they don't exist for you. You might feel you experience them, but if they can't be "proven", then they don't count towards a diagnosis.  That holds true for the sensory stuff: I can tell you that I feel like surfaces are wet all the time -- but there is no way to test for that, no way that the doctor can "find" it as a sign -- so for her, it doesn't exist.  Same with numbness, tingling, buzzing sensations -- you may indeed feel those, but they aren't "proveable".
 
The sleep study is yet another test that might rule in..or rule out..what is going on with you. I hope you get some answers soon.
 
 
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Shashi
Regular Member


Date Joined Jul 2006
Total Posts : 156
   Posted 2/26/2007 12:06 PM (GMT -6)   
Thanks Rhonda and Uppity. I appreciate, as always, your words of wisdom.

It's just been very frustrating to go from healthy and active to barely being able to walk at times, all within 9 months, especially since I'm still a newlywed and this has greatly affected my marriage. And my husband still doesn't understand how I can be so sick with so many tests being normal.

I think what scares me the most is that my mom had some unidentified neurological or muscular disorder, and I seem to be progressing down the same path she did. Many of the symptoms I have now are symptoms that I remember her talking about. The last ten years of her life, she couldn't walk, and the last two years, she suffered from dementia. I don't want to end up like that, and I keep thinking that the sooner they find out what the heck is going on, the sooner they can hopefully treat me and prevent it from getting worse. And getting worse I am. Every time I have a flare or exacerbation or whatever, I'm left with more and more limitations.

But I don't have to tell you guys this. You all know very well how it feels. Which is why I know that, of all of the people in my life, you're the ones who I can talk to who understand the most. Thanks for being there for me, even when I do get "whiney"! :-)
Hugs,
 
Lisa ~
 
Living in Limboland!
 
Negative MRIs + Negative LP + Positive symptoms = A lot of confusion + A ton of frustration!


Motown John
Regular Member


Date Joined Jun 2005
Total Posts : 475
   Posted 2/26/2007 6:49 PM (GMT -6)   

Monday evening

Dear Lisa:

A newlywed, eh?  Did your hubby ALREDY forget "...in sickness and in health.." part of your vows?

John

 

 

 


KAS1
Regular Member


Date Joined Feb 2007
Total Posts : 161
   Posted 2/27/2007 1:15 PM (GMT -6)   
Hi lisa,

good luck for your sleep study appointment! I really hope you get some answers soon!

KAs

Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 2/27/2007 3:17 PM (GMT -6)   
Hi Lisa,
 
   Good luck with your appointment today, please let us know how it all goes.  Its so hard when you "look good" but have all these invisible symptoms that you know are there but other people can't see.  I hope you find some direction with this sleep study.  Best of luck!
 
Kimber
 
Co-moderator for Multiple Sclerosis
 
Allow Healing Well to continue to help others, clink link for details

montecarlo
Regular Member


Date Joined Feb 2007
Total Posts : 235
   Posted 2/27/2007 9:17 PM (GMT -6)   

shashi,

I do not have MS but my mom does,and she went through the same thing,neither of you were treated fairly,I recall the agony when they put her through test after test,but came in with an attitude like she was imagining things,but topped it off by telling her she would be in a chair within 5 yrs.She has secondary progressive MS but from time to time change their''title'' for it. (she is in chair unfortunately)
I clearly understand your feelings,she has MS,and I have Lupus,most of the same crap-run around is happening to me,with these diseases,no one is ''text book'' so why should doctors continue to act like it's all in our head? I am so sorry to hear you are struggling with this disease and it's awful symptoms,whether they agree with you or not,you know your body best,listen to your gut! I have the criteria(for lupus) and the results did come back positive,but some of these quacks we deal with ignore alot if it isn't happening at that exact moment in their office-go figure,we all know there are good days too(if you can call them that).  Take care,I wish you well,stand your ground...I haven't done it yet so I should do the same. I hope to hear EVERYONES good days greatly out number their bad in the near future ,all be well ,I'll be thinking about you!


angielov
Regular Member


Date Joined Feb 2007
Total Posts : 58
   Posted 2/28/2007 12:28 AM (GMT -6)   
Hello Lisa,
Wow. I can so relate however I hope that a diagnosis will come a little sooner for me. I had my first appt. with this neurolgist on monday and he reviewed my most recent MRI which he says has "lesions." I don't know how many. I'm having a lumbar puncture next week. He said he didn't want to diagnose me until the spinal tap and blood work came back but he seemed like he knew what it was. He did bring up MS but didn't really give me clue as to what he was thinking. Hopefully I won't get stuck in limbo-land like you. Did you have an mri, or spinal tap? If so, what did they show?
thanks,
angie

Shashi
Regular Member


Date Joined Jul 2006
Total Posts : 156
   Posted 2/28/2007 10:36 AM (GMT -6)   
Angie, I've had several MRIs, lots of blood work, a spinal tap, EVPs, EMGs, you name it, I've had it. Everything was normal, except for one of the EVPs which showed a slow nerve conduction in my left leg (the leg that is so weak and the one that has the positive Babinksi reflex), and the EMGs showed severe carpal tunnel syndrome in my left hand and moderate carpal tunnel syndrome in my right hand. That's it. It's so frustrating to know that something is wrong, but to have no answers.

Anyway, good luck with your tests and diagnosis. While I hope you don't have MS, I do hope you get some quick answers and treatment.
Hugs,
 
Lisa ~
 
Living in Limboland!
 
Negative MRIs + Negative LP + Positive symptoms = A lot of confusion + A ton of frustration!

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