I thought it was normal!

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Shashi
Regular Member


Date Joined Jul 2006
Total Posts : 156
   Posted 12/4/2006 1:28 PM (GMT -6)   
Musings from a Messed-Up Mind...
 
Looking back at the symptoms I've had since 2002, I wonder at myself that I didn't realize something was wrong sooner. It wasn't until this past summer when things escalated that I even suspected that anything was amiss. Well, I think last year I may have had a vague suspicion. I remember grading a student's research paper on MS and thinking, "You know, I have a lot of those symptoms." But I never gave it another thought, chalking it up to the power of suggestion instead.

(When I was in nursing school, a hundred years ago, half of the nursing students "caught" whatever it was we were studying that week. I personally, in a span of the two and a half years I was in school, "had" Lupus, epilepsy, galloping dandruff, black lung disease, salmonella, palpations, diabetes, gout, jumping Frenchmen of Maine disease (though I'm not French nor from Maine), duodenal ulcers, hepatitis, pneumonia, and Tay-Sachs disease (which was impossible because I'm not of Middle-Eastern ancestry either.) And when we did the unit on reproduction, well, let's just say that the local drugstores did a booming business in pregnancy test sales during that six weeks.)

Anyway, I look back now and realize that I thought some of the stuff that I was experiencing for the last four years was normal. I though everyone had zingers, those shooting nerve pains that appear light lightening bolts out of nowhere and race through your body. The fatigue I felt every summer and for about a month last winter was chalked up to my busy schedule, being out of shape, and never eating anything nutritious if I can help it. I was surprised to learn that it's NOT normal for your vision to go blurry to the point of having to squint and blink to be able to see, even with glasses. And I never thought to ask anyone else if parts of their bodies went numb for no apparent reason, even though the right side of my chin has been numb for almost two years. I thought it was all normal. And how was I to know otherwise?

I never realized that all of these things weren't just a part of aging. Not until I started having tremors that feel like internal earthquakes; horrible muscle spasms, stiffness, and weakness in my arms and legs to the point that I almost can't walk; fatigue so draining that I can barely move; slurred speech; increasing forgetfulness; slow word recall and wrong word substitution; and buzzing sensations that feel like a hive of bees living under my skin. Those made me finally realize that "Hey, maybe something's wrong here!" Well, DUH! eyes

Are other people so blind to the workings of their own bodies? Am I the only one who ignored obvious warning signs, thinking all the time that what I was experiencing was "normal"? How are we to know what's normal and what's not anyway if we never think to ask?

Oh well, excuse my ramblings. I'm just amazed that I missed the obvious, all because I thought it was normal. confused


Hugs,
 
Lisa ~
 
Living in Limboland!
 
Negative MRIs + Negative LP + Positive symptoms = A lot of confusion + A ton of frustration!

Post Edited (Shashi) : 12/4/2006 10:37:51 PM (GMT-7)


Nemekke
Regular Member


Date Joined May 2006
Total Posts : 309
   Posted 12/4/2006 2:23 PM (GMT -6)   

Hi Lisa,

I don't normally post here, but may become a regular around here.

I had a good giggle about your nursing school experience - I was a medical transcriptionist and I, too, had a lot of symptoms during that time...lol

I think many of us don't see what is happening to us as being abnormal because most people have aches and pains and complaints on a daily basis.  We chalk it up to all the things you mentioned and ignore it, hoping it will go away.

Chatting with RhondaB is what opened my eyes to the fact that the symptoms I am having could be MS.  All this time I've been blaming chemotherapy and cancer (I'm in remission at present).  For years I have had memory and speech issues, numbness and/or tingling in my extremitis, severe sharp stabbing pains, etc.  Now I also have dizziness, weakness, falling, and vision changes.

I have read many of your posts and you are an intelligent person.  I wish you symptom-free days.

*Hugs*

Michelle


Though we live in a world where anger and hatefulness seem to be the norm, we CAN make a difference, one person at a time.


BGD2Me
Regular Member


Date Joined Apr 2006
Total Posts : 366
   Posted 12/4/2006 2:31 PM (GMT -6)   
I too thought a lot of things were normal. I thought everyone's arm got tired while they were brushing their hair, brushing their teeth or other things. I thought everyone got tired walking up or down the stairs. My hubby never mentioned anything was amiss until I would wake up and come downstairs to fall asleep on the couch. My 3-5 hour naps were a warning sign, to him! I still just thought I was coming down with something. I thought maybe I had mono again. I thought I had it 2 years before that, never went to the doc so it's not confirmed. Both times that I have came down with "mono" or whatever this is has taken me 6-8 months to get over. I don't have a dx yet. I'm in the wait and see period. I was told if it is MS, it will come back.

Eye problems are the hardest for me to explain. These are my eyes, this is how I see the world. How am I suppose to know that others see differently. When I needed glasses, I told my mom that I couldn't see the teachers eyes anymore. She told me to sit closer. No one caught on that I needed glasses for 2 years. I told my hubby a few weeks ago that sometimes things looked blue. It was the nuero who found a blurry spot in my vision. Vision is a hard thing to describe, for me.

I wish you lots of luck living in limboland with me and others! At least being oblivious to some of these things has given us a break from worring about it for many years!! (I hope that came out right)

Lysha
When everything's coming your way, you're in the wrong lane.


dvmtobe
New Member


Date Joined Nov 2006
Total Posts : 19
   Posted 12/4/2006 5:52 PM (GMT -6)   
I am with you all in limboland. Worst part is that my GP says that I have MS. My neuro-opthomalogist says I have MS but my neurologist says that I'm crazy. Well...alright not exactly, but that is what I basically got out of our last conversation. She actually told me exactly what you all just described that I may be exacerbating the issue because I am a veterinary student and I am studying medicine. I have to say though...the topic of MS has literally never come up in my veterinary classes :)

Lisa, I am like you in that brain MRI is normal, LP is normal. I have had two episodes of diagnosed optic neuritis (with swelling at the optic disc and a positive Visual Evoked Potential) but no MRI lesions to support. I have numbness, tingling and weakness of my left side (and I am left handed). I do have lesions in my spinal cord but apparently they don't correlate with the signs that I have and they are not all characteristic of MS lesions. I have had problems for years off and on of extreme fatigue, memory loss, vertigo and neuropathic pain. I always thought it was just me. It was just stress. It was just that I went running too far or I was doing too much. My husband also is the one who kept saying that it wasn't normal and I needed to do something about it. I feel your pain and support your courage to speak up and say...this is not normal...somebody help me.

It is a strange feeling however to in part hope for a diagnosis but be terrified of getting it. I have another MRI session scheduled for December 12th which I am seriously considering canceling. It is a recheck for the lesions in my spinal cord and to see it anything has developed in my brain. They say if they see something new it will change my status. I have to admit that I am not ready for this. And I have been doing relatively well lately (except for my vision which is crappy!).
Although I too am grateful perhaps that I was sort of blind to the symptoms I had been experiencing for so long, I can't seem to let go of that denial.
How do you all deal with being in limboland on a daily basis? I personally am having a really hard time.

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 12/5/2006 7:30 AM (GMT -6)   
Hey Everyone

Yes, u can go about living u'r life and experiencing strange and unusual things without realizing they are indeed strange and unusual. Consider a child of abuse, whether it be physical, mental or sexual. Do u think that child will realize they are abused? Prob not. It's the norm for THEM. Only when someone steps in and says something or does something to alter that lifestyle will they see that everyone else DOESN"T live that way. Well, if u have probs remembering things for a long time, then u just say u have a horrible memory. If u have probs opening u'r mouth and getting out what u have in u'r mind, u assume something's not right with the brain. Quite honestly i felt that way for many years. I'm not a dumb person. I had a double major in college and have many, many professional accomplishments including being a member of Who's Who Among Executive Women. However; u can doubt u'rself to the point u believe that stuff was somehow a fluke and mistake. When i finished college i went to work right away. I was confident and eager and did very well, until i got tired. EVERY time i got tired i found myself being 'stupid'. Saying things that didn't make sense and when i'd try to correct them i only made it worse. As i sit and write, i recall having probs with my vision that my eye doc couldn't fix right up to the time of my presenting symptoms..the overt symptoms that eventually brought me here. I KNEW something wasn't right with my eye. I could see just fine almost all the time, but then and now, there are times that my eye is just blurry. No reason for that. Not only when i'm tired...so no pattern there.

Do u complain? No. First of all u don't have any good reason to complain. What do u tell everyone it is? It's almost as if u feel u must be able to diagnose u'rself before making it public. Otherwise there's no weight to it...wrong. Second, again, u feel it's normal. In my case, maybe not normal for everyone, but for those who are obvious dummys it's normal. No offense meant there...but i felt at one time, and for a long time, that i must be in that level with the dummys. How'd i do that? Do other dummys pass in school? Ok, tangent, sorry. My point is the same as everyone else's...we don't complain because we don't know to or because we just can't figure it out ourselves. When i see a doc i pretty much have already dx'd myself....i know what's wrong. This time i can't and whadda'ya know...they can't either. (Hummmm....do i need to hang my med degree???)

I know this post must sound really strange (see? not so dumb afterall...i saw that!) because who in the world would think ms symptoms would make u feel dumb? Well i never really had anything happen that would turn my head until last Feb. All my 'symptoms' were strange little oddities that wouldn't amount to anything. I have a place on my right foot that's been numb for years. I thought it was just a damaged nerve...and it very well may be. My eyes get blurry for no reason and then just clear up for no reason...prob fixed! Yes, Lisa, zingers...tho i hadn't realized that could be part of all this until reading u'r post. (hummmm...power of suggestion again??) Memory probs...i think...i don't really remember now. ;) Yes, Lysha, i've experienced the probs with my right arm giving out doing simple things. Yes, u think it's normal...just because it's normal for u. I guess i could go on, but u get the point. But for the sudden and full body consuming numbness (tho only in patches so i didn't get too concerned about that for awhile) and the drunken walking, i wouldn't have acted to this day. It all may be attributed to something else or to ms. Who knows for now.

Yes, dvmtobe, it is a very strange feeling to hope for yet be afraid of a dx. We need to know what's wrong...obviously something IS wrong. I've had pretty much every test in the book. All normal or neg. Should i just forget this and move on with my life. Probably. I can't tho. Almost daily there is some reminder. It's always in the back of u'r mind, no matter if u'r enjoying time with u'r family or working in the yard or just doing nothing...it's there and it will be there until u find a dx. I'm sure once a dx is discovered it'll be ever more prevailing upon u. Now i've experienced many symptoms that i fear coming back. I wonder sometimes if the worry i have over them returning isn't part of why they do return. I'm sure it doesn't help. Consider how u'd feel...and many of u do feel...to find u'rself unable to stand up straight or to walk without going sideways because u'r experiencing that 'drunken' walk...and having u'r children look on. It breaks my heart because I'M suppsosed to be their stronghold. If i'm sick or if i'm out of control, what securtity do they have? Consider being afraid to drive with u'r children in the van with u..because u never know when u'r going to lose u'r balance and sense of placement. That's real fear. Yes, we all feel these things...but for each of us it's personal and more empowering over us. It's easy to say 'don't worry' or 'it'll be ok', but it's much harder to accept that in the drivers seat. How do u manage in limbo land for so long? What choice do u have? U deal with the day to day as it comes. That's it. Not easy, but doable. I guess the up side is that we're all here together to help each other. Now we can compare notes and KNOW we're not dummys or just complainers. We really do have something going on, tho what it is we don't know just yet.

rhonda

Post Edited (rhondab) : 12/5/2006 6:34:55 AM (GMT-7)


Shashi
Regular Member


Date Joined Jul 2006
Total Posts : 156
   Posted 12/5/2006 8:47 AM (GMT -6)   
Nemekke said...

I had a good giggle about your nursing school experience - I was a medical transcriptionist and I, too, had a lot of symptoms during that time...lol

     Michelle, it's kind of a coincidence, but I teach medical transcription courses.  :-)


Hugs,
 
Lisa ~
 
Living in Limboland!
 
Negative MRIs + Negative LP + Positive symptoms = A lot of confusion + A ton of frustration!


Nemekke
Regular Member


Date Joined May 2006
Total Posts : 309
   Posted 12/5/2006 10:10 AM (GMT -6)   

LOL Lisa :)

I think the best example of assuming symptoms would be a woman I worked with who was convinced she had prostatitis...and didn't believe she didn't have a prostate until she had an internal exam and ultrasound.

I think most of us are susceptible to the power of suggestion, and in cases where you work in the medical field, we go the other direction and ignore signs and symptoms thinking it is just our work affecting us.

I hope today is a good day for you.

Michelle


Though we live in a world where anger and hatefulness seem to be the norm, we CAN make a difference, one person at a time.


photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 12/6/2006 1:06 AM (GMT -6)   

Hi everyone,

For about 6 months before my diagnosis, I was soooo tired.  I thought it was me being overweight, me being lazy, or depressed.  Looking back, a 31 year old should not have to go lay down in the car after grocery shopping for 15 minutes.  I kept thinking "gee, I need to exercise, I'm so out of shape!", when really I was on a great diet and losing weight which should have been increasing my energy.

Ironically, if I had gone to the doctor a couple months earlier and had been diagnosed, I wouldn't have qualified for long term disability coverage through my work, that's how close it was!  Some things happen for a reason. 

I always had in the back of my head the fear that I could get MS like my uncle and great aunt did.. but my uncle got it in his teens, so I thought when I hit mid twenties I was out of danger.  I'm glad I never looked it up, because it spared me from worrying about it for many years. 

Shar

 

 


Diagnosed with MS April 2006
Longstanding anxiety and depression
Currently on Betaseron


ivgm
New Member


Date Joined Dec 2006
Total Posts : 1
   Posted 12/9/2006 1:51 PM (GMT -6)   
Wow, I wish I had the excuse of being medically trained! I started to actively persue my wierdness about 10 years ago. I went to the doctor about both of my wrists going numb at the same time. The numbness started in my fingers and during the next couple of days went inyo my arm. I was diagnosed with carpol tunnell. I knew carpol tunnel didn't affect both wrists at a time. I was diagnoses depressed and put on anti-depressents again. 2 years later I decided 'Patient heal thyself' and wentback in thinking it had someting to do with my thiroid. I was sent t a neurologist who did a cat scan which showed nothing. must be depression.
In 2000 I had an exaserbation. They did an MRI, then a spinal tapo. Wa la! ms I guess I'm not totally crazy!

ivgm
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