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Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 1/8/2007 4:07 PM (GMT -6)   
Hi guys...I don't think I can do this anymore. I don't care what it is anymore, I just want a diagnosis. Sometimes not knowing is just as bad as knowing. I swear in my heart its MS. I need help from you guys please. Do you think its ms??? The vision problems but not optic neuritis, the tingling and some numbness, but no lesions. Can we have symptoms with a normal mri???
 
Well, I found out I was pregnant about 5 days ago. I am so excited but so scared. My doctor said its ok for me to go pregnant even when we don't know whats causing my symptoms. I have had these symptoms for one year. Im hoping the baby and I will be ok.
 
As you all probably know, my visual symptoms are still happening. Sparkles (visual snow as some doctors call it) trails (palinopsia) blurred vision, and sometimes distorted vision (things look crooked)
 
2 mri's of the brain, 1 catscan of the brain, 3 eeg's, blood tests, echo, ekg, chest xray.
 
All they found was high prolactin (101, then 89) which the doctor said no cause and sometimes seen in women. They put me on Dostinex which lowered it to 3. Then a small hole in my heart. Which only one doctor believes this is related to all of my symptoms (causing migraines), then eeg's showed some abnormalities but non specific and not seizure related.
 
I am 25 years old and these symptoms started 1 year ago.  Could stress cause physical symptoms?? Even mess with your vision??
 
No lesions so I figure No MS......is this right? 

Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 1/8/2007 4:11 PM (GMT -6)   
Oh and ....... doctors say its not ms......were you ever told it wasn't when it was. Or, if doctors say its not does that most likely mean its not. They don't know what it is.

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/8/2007 4:15 PM (GMT -6)   
You've asked this question before. No, I don't think it's MS. The vision problems you are having are not typical for MS. You've had all the tests -- repeatedly -- and they come back negative for MS. There are LOTS of disorders -- INCLUDING STRESS -- which can cause your problems.

Does this mean you'll NEVER have MS? No. It would be like saying, "I've crossed this street a thousand times and never gotten hit by a car; therefore I'll never be hit by car, crossing this street." It could happen. But it's not likely.

Congratulations on your pregnancy. Presumably you'll be watched through your pregnancy for things like diabetes, thyroid problems, all those things that sometimes can complicate a pregnancy..and be a cause for some of your vision problems.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 1/8/2007 4:46 PM (GMT -6)   
Thanks Uppitycats...well then, I guess I just live with these symptoms. But uppitycats, just curious are there other tests besides brain mri that can show ms. like, fluid in the brain, what if thats positive because I never had a spinal tap.

Funny you say thyroid and diabetes because that does run in my family. But I've been checked for both.

KIMC
Veteran Member


Date Joined Aug 2005
Total Posts : 682
   Posted 1/8/2007 4:49 PM (GMT -6)   

Neurogurl

I can understand your frustration with these symptoms and not knowing what is going on.  I would suggest to keep researching, keep pursuing answers, and see other Drs.  Drs do not know everything, and although they have not been able to give you a dx, it just means the Drs you have seen so far just have not figured it out yet. It is not normal to have the symptoms you do, and even if the symptoms diminish I would continue to pursue answers.  It is common for symptoms to wax and wane in many diseases, including MS.

I was dx with MS for 5 years before I found out I have lyme disease.  Most Drs do not know about lyme disease. It is a serious disease which can cause severe neurological problems if left untreated.  It has a wide range of symptoms like MS.  If you want to know how to find a LLMD (lyme literate MD) go to the lyme board on this forum.

You may not have lyme, but it may be worth looking into.  If you google MS and lyme you will get lots of info.

Congratulations on your pregnancy.  I never felt better than when I was pregnant.

Best Wishes and good luck.  


rushelle
New Member


Date Joined Jan 2007
Total Posts : 8
   Posted 1/8/2007 5:12 PM (GMT -6)   
Neurogurl;
 
My experience began about 4 yrs ago. I had just turned 30.
 
One day I was sitting at the table with my husband and a neighbour when all of a sudden i could feel my face go really numb. I was very scared and didn't know what was happening. The company left and when I went to talk to my husband, all i could do was mummble. I was thinking clearly but it wasn't coming out!!1 i thought to myself..."I'm having a stroke!!" I went to the hospital and they ran a battery of tests. Over the course of a few days it went from a numb face to my vision going double and walking like i was three sheets to the wind drunk.
 
Needless to say i was a basket case!!!.
 
The Doctor at the time thought for sure it was MS since I have two aunts on my mother's side who have it as well as a cousin with fibromyagia and they are also looking into MS with her.
 
My symptoms went on for 7 months!! feeling of hot water being poured onto my legs, the tinkling on my face, the vision problem.
 
They gave me a weeks doses of steriods, which i found out I cannot take( allergic).
 
They did a spinal tap, MRI, eeg, and the one where they hook up the electrods to different parts of your arms and legs (I forget what it was called)
 
Long story short..........no diagnosis. NO. Nothing. I had a few abnormalities show up on a few tests but nothing was conclusive.
 
The majority of the symptoms have subsided (thank God) but when I work too hard, get stressed out or way over tired, they will rear their head and let me know that they haven't entirely gone away.
 
Maybe it is MS, maybe NOT....but I've decide I'm not going to dwell on it and let it eat me up. I have two beautiful boys and a loving husband to take care of and I'm not going to let those symptoms take over my life.
 
I take it easy when they act up, and find ways to get the neccesary stuff done and leave it at that.
 
Your not alone when it come to know answers.
 
Hope this helps somehow. Lots of hugs sent your way.
 
rushelle

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/8/2007 5:15 PM (GMT -6)   
Neurogurl said...
Thanks Uppitycats...well then, I guess I just live with these symptoms. But uppitycats, just curious are there other tests besides brain mri that can show ms. like, fluid in the brain, what if thats positive because I never had a spinal tap.

Funny you say thyroid and diabetes because that does run in my family. But I've been checked for both.
A brain MRI will show lesions -- not fluid -- in the brain.  It is quite unlikely you have "fluid in the brain" anyway. If you did, you'd have many m ore severe symptoms, including seizures. A spinal tap would be a test that you might ask about - -as it might point a doctor in a direction that hasn't been pursued yet, like an infection in the central nervous system. I see the Lyme folks are after you now. It isn't all that likely you have Lyme disease either. Your symptoms are not typical for Lyme, either. But you might pursue that, if you want.  Although they keep saying how similar the symptoms are between Lyme and MS, I've studied both very carefully, particularly after they jumped all over me here, and I really don't see much of any similarity.  There is going to be a television show on Wednesday night - -the Discovery channel -- which you might try to watch where some woman was diagnosed with either Lyme or MS and it turns out she has the other (I don't remember which way that went..I think she thought she had MS and instead has LYme). Anyway...that might be another avenue to pursue.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 1/8/2007 6:01 PM (GMT -6)   
Hi Neurogurl,
 
   I'm sorry for all you are going through.  It does seem unlikely at this point with all the negative testing that it is MS, but don't give up on finding the cause.  Sometimes it can take quite some time for things to show definate one way or another, and I know the waiting is awful from personal experience.   All you can do is hang in there and deal with the symptoms best you can.  Congratulations on your pregnancy!  Please keep us updated on how you and baby are doing :-)
 
Kimber
 
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Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 1/8/2007 7:21 PM (GMT -6)   
Thank you all for the support. I am not kidding you, you have all brought a tear to my eye. Just to know that you are like a family to me. You care enough to post your thoughts. I truly love you all so much for this. You have made such an impact on the way I've been feeling. I am going to try my best to stay positive.

Rushelle.....so do you believe that it is stress bringing on your symptoms?

KimC....I was thinking Lyme too. But I never got the actual bite mark. Does that have to appear?

Thank you all again

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/8/2007 7:28 PM (GMT -6)   
Neurogurl said...
Thank you all for the support. I am not kidding you, you have all brought a tear to my eye. Just to know that you are like a family to me. You care enough to post your thoughts. I truly love you all so much for this. You have made such an impact on the way I've been feeling. I am going to try my best to stay positive.

Rushelle.....so do you believe that it is stress bringing on your symptoms?

KimC....I was thinking Lyme too. But I never got the actual bite mark. Does that have to appear?

Thank you all again
Not KimC -- but the tick bite is small enough that you might not notice it.  And although the literature talks about a "bulls-eye rash", that isn't always evident either.  If you are out of doors and where bugs are around, you could be bitten by a tick (or any insect) and not really be aware of it, or just dismiss it as "another mosquito bite"...itchy, bothersome, but it goes away. 
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


KIMC
Veteran Member


Date Joined Aug 2005
Total Posts : 682
   Posted 1/8/2007 7:58 PM (GMT -6)   

Uppity you are correct about the tick bite. The percentage of people who get the rash is very low (less than 50%).  Also some people get a rash but it isn't the typical "bulls eye" rash. My daughter had a rash in the area I found a tick and even though the pediatrician saw the rash, she said no not lyme cause it's not the bulls eye.  Guess what, 2 yeasrs later I find out my daughter has lyme.  

I have been surprised of the lack of knowledge by most MDs about lyme.  My peditrician has called me afew times to ask me questions about lyme as she is seeing more and more patients with strange symptoms.  Atleast she admits she is not knowledgable about lyme and is pursuing more info.  More than I can say for alot of Drs.

Neurogurl if you think lyme is a possibility you should pursue it as if you have lyme you should be treated so your baby doesn't get the bacterial infection. There is evidence that lyme can be passed from mother to baby in utero. The best pediatric lyme specialist in the Country is in CT.  I don't know where you are but he does do phone consults and will work with your local Dr. Lyme is treatable unlike some other diseases.

Neurogurl I am not trying to recruit people for lyme, just trying to inform those who are unsure of their dx or lack of, about the possibility of lyme.  I have been through alot and I don't wish this on you or anyone else.  I know if I had been treated sooner I would not have the neuro problems I do now.  I just want to be helpful.


rushelle
New Member


Date Joined Jan 2007
Total Posts : 8
   Posted 1/8/2007 8:44 PM (GMT -6)   
Neurogurl said...
Thank you all for the support. I am not kidding you, you have all brought a tear to my eye. Just to know that you are like a family to me. You care enough to post your thoughts. I truly love you all so much for this. You have made such an impact on the way I've been feeling. I am going to try my best to stay positive.

Rushelle.....so do you believe that it is stress bringing on your symptoms?

KimC....I was thinking Lyme too. But I never got the actual bite mark. Does that have to appear?

Thank you all again
Neurogurl;
 
No, I don't believe that stress brings on my symptoms, but too much stress mixed in with fatigue, getting over heated, a cold etc. too many things draining me down, etc. Sometimes nothing is going on and my life is going great and than BAM!! my vision doubles for a couple of weeks, my face will numb up, etc.
 
It's a toss of the coin.
 
The Dr.s right now are thinking it might have been all started by a viral infection.(I can never remember the name of it) but I don't really think so, you would think it would have run it's course by now wouldn't you.
 
take care.
rushelle


Shashi
Regular Member


Date Joined Jul 2006
Total Posts : 156
   Posted 1/8/2007 10:23 PM (GMT -6)   
Oh Sweetie, I know so well how you are feeling. It's danged frustrating to know that something is wrong, but all the tests come back normal. It's enough to make you want to just scream, isn't it. Just hang in there. I have a theory that whatever so many of us in Limbo have is a separate disease all together that just hasn't been discovered yet. Hopefully someday, someone can help us.

And congratulations on the baby. I know you must be thrilled. Big hugs to both of you.
Hugs,
 
Lisa ~
 
Living in Limboland!
 
Negative MRIs + Negative LP + Positive symptoms = A lot of confusion + A ton of frustration!


LAO1164
Regular Member


Date Joined Jan 2006
Total Posts : 285
   Posted 1/10/2007 5:04 PM (GMT -6)   
Hi Neurogirl-

I am so sorry you are going through the frustrating process of not knowing...I have been there. My symptoms also could have been potential MS, but after all MRIs and other tests were clear, I finally looked into Lyme Disease. And lo and behold that is what I have.

I was in an endemic area around a dead deer, but no tick bite. KIMC is correct, less than 50% of people recall a bite, and ticks can inject a numbing agent and fall off before you know it.

There are many things you could have, but I urge you to rule out LD as time is of the essence with it. I would give anything to have the two years back that I listened to doctors, went thorugh lots of testing, and meanwhile all I needed was antibx. Good luck to you and you will get through it, whatever it is!

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/10/2007 7:02 PM (GMT -6)   
rushelle said...
Neurogurl said...
Thank you all for the support. I am not kidding you, you have all brought a tear to my eye. Just to know that you are like a family to me. You care enough to post your thoughts. I truly love you all so much for this. You have made such an impact on the way I've been feeling. I am going to try my best to stay positive.

Rushelle.....so do you believe that it is stress bringing on your symptoms?

KimC....I was thinking Lyme too. But I never got the actual bite mark. Does that have to appear?

Thank you all again
Neurogurl;
 
No, I don't believe that stress brings on my symptoms, but too much stress mixed in with fatigue, getting over heated, a cold etc. too many things draining me down, etc. Sometimes nothing is going on and my life is going great and than BAM!! my vision doubles for a couple of weeks, my face will numb up, etc.
 
It's a toss of the coin.
 
The Dr.s right now are thinking it might have been all started by a viral infection.(I can never remember the name of it) but I don't really think so, you would think it would have run it's course by now wouldn't you.
 
take care.

Rushelle --
if indeed your problems were caused by a viral infection -- it could well have caused permanent damage to your nervous system, and that damage is what you're experiencing with your symptoms.  There are viral..and bacterial..infections that can do that (which is why anyone with these kinds of symptoms needs to see a doctor and be tested for all of those, because some of them can be treated, and if caught early, the damage is minimized, if not eliminated.)  So it may well be that you no longer have the viral infection..but it's damage is evident by the symptoms you experience.

...I am not a doctor, nor health professional, and don't pretend to be one, here.....


rushelle
New Member


Date Joined Jan 2007
Total Posts : 8
   Posted 1/10/2007 10:02 PM (GMT -6)   
Uppitycats;
 
I never really thought of it like that......it does make a whole lot of sense though.
 
I wonder if even though the infection may be gone would they still be able to check and find out that THAT is what started all this?
 
It's been about four years now since it all started and things have mellowed out for the most part.... my face still goes numb on occasion and sometimes I get mummbly(thats what my hubby calls it) and the tingles and 'hot water' feeling i get are about the worst it gets over the last year.
 
the double vision doesn't happen near as much anynore but things look jumpy. weird eh.
 
anyway, i haven't really been to the dr. about any of it in almost 2 yrs now so I don't know if it would be worth while or just drudging up something that can't be fixed.
 
It was such a roller coaster before, i don't know if i'd want to get back on again, you know.
 
'let sleeping dogs lie' sort of thing.
 
take care.
 
 
rushelle

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