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Scared of MS or NMO but can't get a diagnosis

Hi,
I am new to this site but have been trying to figure out what is causing a number of symptoms without any diagnosis for about a year and a half now.  I've experienced strange sypmtoms for as long as I can remember but everything got worse about 3 months after the birth of my first child in the fall of 2009.  I've had an MRI done of my brain and been to a retina specialist and neuro-opthomologist as well as an arthritus specialist.  I've had a million blood tests - including Vitamin D deficiency, Lymes, etc. and everything has come back clean.  I've had problems with my vision - colors seem less vivid, especially reds, greens and browns, horrible sensitivity to glare, increasingly bad night vision - but my optic nerve seems fine.  I also have really bad night sweats, I often wake up with numb arms and/or legs and I have constant little twitches going on all the time all over my body.  I don't remember the last time that I didn't have any pain in my body; my arms and shoulders often feel very tight and my legs and stomach do too.  I feel like I drop stuff all of the time and am constantly walking into things but all my neuro exams show that my reflexes are strong.  My neurologist told me that he was confident that I don't have MS because my brain MRI was clean but I'm still scared that something is being missed.  I frequently feel really weak and have trouble concentrating at times.  All of this is so frustrating because my doctors don't ever have an answer.  I am seeing a new neurologist in the end of May but am afraid I won't learn anything new.  Does anyone have any advice? Sorry for the rant... I'm just looking for help!
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Avatar universal
Thank you everyone for your comments.  It's so helpful just to hear that others have experienced the same frustrations.  My first neurologist ruled out MS as did my PCP based on the MRI I had done of my brain in October of 2009.  They said I had 2 spots from aging (I'm 30) and that my optic nerve looks perfect.  My blood work has always been fine - ruled out Lymes and Vitamin D deficiency or problems with my thyroid.  My neurologist tried to tell me that all of the symptoms were due to stress but after seeing a therapist she said stress doesn't cause the types of symptoms I'm experiencing and wanted me to see a new neurologist.  So, now I switched neurologists and am seeing a new one at the end of May.  

The weird thing is that I keep having problems with my vision.  It doesn't come and go.  It's all the time.  Reds, greens and browns always seem faded and I have major problems with glare from the sun and other bright lights.  All of the research that I've done points to a problem with the optic nerve (MS, NMO, Lymes, Vitamin D deficiency or a tumor) but the MRI and multiple opthomologists that I've seen keep saying my optic nerve looks fine.  Has anyone else experienced anything like this?

Crazydaisy, good luck with your MRI.  I'll be thinking of you today.  Let us know what you find out!  
Helpful - 0
1660252 tn?1302553499
I have pretty much all the same symptoms as you and am so scared of MS as I am a 34 yr old mother of 2 and can't picture myself disabled in the near future!  I am always fatigued, pin and needles all over, weak arms sometimes, forgetful, drop thinigs more, sharp pain in my back a few times, feet burn, it is so annoying and the worst is knowing it will get worse.  I am so depressed and will be starting on any drug there is to slow the progression if I can, they are so fricken expensive and I'm sure it will be a battle with my cheap insurance co.  Hang in there tho, becuase I try to remember that medicine makes great advances every day and hopefully one day be able to cure this horrible disease.  My MRI is in 2 days, I think I'll have to drink a bottle of vodka to endure it.  j/k
Helpful - 0
198419 tn?1360242356
Hi there,

Adding on a belated welcome to you. You were given so much good information I only wanted to add that my initial thoughts are for you to continue to pursue the doctors for the cause.

Some of these diseases are especially sneaky - especially Lymes. The testing for it should continue and I too think a rheumy is a good idea as well as an ID doc.

I second Karens questions too - what has been ruled out at this point? Has the neuro mentioned?

Thanks for joining us,
Shell
Helpful - 0
Avatar universal
Hi Karen,
Thank you for responding.  The neuro-opthomologist said that he thought that my optic nerve was fine.  He did a vision test where I looked into a machine and looked for dots and flashing lights.  He was looking at my retina and said everything was functioning as it should be.  The problem is, I know my vision is distorted because everything looks faded; almost like a gray film has been put over everything.  

I did go to a rheumatologist who said that my symptoms, aside from the visual changes, were suggestive of fibromyalgia but she was hesitant to give a diagnosis of it because she felt that everything else should be ruled out first.  

I'm going to read the article on invisible lesions.  Thank you for passing it on.  I've been trying to read as much as I can to prepare for doctor's visits.  Sometimes I feel like I could give myself my own check-up now.  I'll definitely keep everyone posted.  

Thank you!!!!!
Helpful - 0
562511 tn?1285904160
Welcome to the forum.  No need to apologize for ranting.  We all do our fair share of that here on an as needed basis.  :-)

What you are experiencing is very frustrating.  It is good that you will be seeing a new neurologist.  You will want to get a copy of the films or CD, and the written report from the radiologist who read your MRI.  Bring those with you to your new neuro.  Now is a good time to get copies of all lab reports and any other testing you've had.  Having those reports will come in handy.  Good for you to know what tests have been done and to share with other doctors.  Always keep a copy for yourself.

A couple of things come to mind while reading your post, mostly questions.

Do you know if your MRI was done using MS Protocol?  The pictures or "slices" will be smaller than the usual MRI.  Sometimes the strength of the machine can make a difference to see a lesion or not.  Was Gadolinium contrast dye used?  I remember being told that a microscopic lesion on the optic nerve can cause vision problems.  I also remember how reds were washed out.  The colors red and green annoyed me.  It was bothersome at Christmastime with all those blinking red and green lights.

What did the neuro-opthomologist have to say?  Did he suggest NMO?

With MS, it is common to worsen after the birth of a child.   Not sure about other diseases.

Perhaps your new neurologist would be willing to MRI your cervical spine?

Have you been evaluated by a rheumatologist?

We have a great resource here in the Health Pages - upper right hand corner.  Apparently, it is possible to have MS without visible lesions.  I don't mean to say MS is what you have, but information is what you need right now.  

http://www.medhelp.org/health_pages/list?cid=36

Specifically on "invisible" lesions:
http://www.medhelp.org/health_pages/Multiple-Sclerosis/How-Can-a-Person-with-MS-Have-a-Negative-MRI/show/161?cid=36

Keep us posted.  
Helpful - 0
338416 tn?1420045702
I think you definitely have something going on.  At this point it's hard to say, but you might look into myasthenia gravis, as it can cause weakness.
Helpful - 0
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