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Posted 5/12/2009 4:33 AM (GMT 0)
Hi, for the last few months i have been experiancing some annoying symptoms:
extreme fatige, to the point where i can stay in bed all day despite going to bed early in the evening
muscle spasms in legs and arms
eye jerking, slight nystagmus
ataxia--i fall or loose my balance all the time, this is made worse when i don't have my glasses on or its dark ( i realize its dark, but i cant even stand still in the dark)
i am extremely forgetful, i can forget what im talking about in the middle of a conversation, and i tend to invert words, slurred speech at times
the only real pain that i have may sometimes be in my eyes, because they jerk all the time and in my ribs, i have a hard time taking a deep breath
sometimes the top of my head and side of my face will tingle for a few mins, but it never stays
my right arm tends to go numb, this never stays long--thankful for that. and i sometimes feel like i am touching something really hot with my fingers
i get vibrations in my upper legs, i feel like i have my cell phone in my pocked and its going off when its not.
both my grandmother and aunt have ms

I have had a negative mri and have an appointment with a neurologist next month. My question is this, is it possible to have a negative mri and have ms?
Posted 5/12/2009 8:09 AM (GMT 0)
Hey Jenn,

I am sorry to hear of your problems.  Your symptoms are definitely MS-like.  It is possible to have MS and not have lesions show up.  It is extremely rare to receive a diagnosis this way though.  It is thought that early MS can fail to produce lesions visible on an MRI.  The problem is that MS symptoms can be caused by a number of other conditions and diseases.  Below is a link to a website that discusses the diagnostic process for MS in detail.  I hope this helps.

Please feel free to post here as much as you want.  You may want to view the rules; those are in the side-bar there on the right. 

http://www.mult-sclerosis.org/diagnosingms.html

Posted 5/12/2009 1:23 PM (GMT 0)
Thank you so much for your input. I have seen that website. I have been told by some people that I need a spinal tap for a more diffinitive rule out. At this point, the diagnosis would not be as devastating to me as the nurologist telling me there is nothing wrong, because this cant be normal.
Posted 5/12/2009 1:28 PM (GMT 0)

I understand what you are saying.  We hear that all the time and yet receiving a diagnosis of MS is extremely devastating.  Try to be patient.  I hope you find relief soon and that whatever is causing all this is treatable. 

Posted 5/13/2009 12:14 AM (GMT 0)
both last evening and today have been really bad for me: my legs feel like jello, i've been dropping things all day. woke up this morning with my fingers in my right had so stiff i could not move them. I went to a ice cream place today and could not tell the guy what i wanted, i know what i want to say but i cant say it sometimes.

I read that you can have probable ms with a negative mri--but do they treat it--this is very scary :(
Posted 5/13/2009 1:32 AM (GMT 0)
Nope, unfortunately probable MS gets you the watch and wait treatment. 
Posted 5/15/2009 2:43 AM (GMT 0)
Hi Jenn,

Sorry you are having such a scary time.

I can identify with a lot of things you are experiencing - muscle spasms, poor balance in the dark, poor word retrival, fatigue.

The best thing is these symptoms can get better or go completely. Though my balance is still poor all the time I have no fatigue, no spasms & my word retrival went fron the level of a 10 year old to pretty good for 10 years & now it is not so good again.

My Mum had MS & was only diagnosed in her 80's. When I was dxd with SPMS I only had one very small lesion.
Posted 5/15/2009 3:18 AM (GMT 0)
Hey Popsie,
Yeah, the speech is my latest symptom. Things like balance and the muscle spasms, and the constant need to void, and urgency are not ok, but its the speech and nystugmus that are the worst because people can notice them. my nystagmus is not when im looking dead on, but when im looking to the right and sometimes up. I am a nurse which in ways it makes it harder because you constantly want to diagnose yourself. my dr has ruled out ear problems, electrolyte problems, hiv, urinary tract infections, lupus .i dont know what else to look for. The only pain i am really in is right now my eyes, which i think is from the constant jerking and around my ribs when i take a deep breath in, which my be totally unrelated, minus the charlie horses in my legs. i also have a completely numb patch on my left upper outter thigh. the dr said this was benign, but i dont know how . i would me more then open to any suggestions regarding what else this could be.

Thanks
Jenn
Posted 5/15/2009 3:58 AM (GMT 0)
Jenn,

You might want to try having your eyes checked by a good opthalmologist (not an optometrist).  If you are having Optic Neuritis, a good opthalmologist should be able to see it (most of the time).  It appears as inflammation of the optic nerve.  I can cause eye pain.  It might be causing your nystagmus.  I don't really know though.....I am guessing there.  Just a thought.

Posted 5/15/2009 5:15 AM (GMT 0)

Jenn,

When you say negative MRI, is that a brain or spinal MRI or both?  I have never had a lesion show up on my brain MRI, it took four years for me to find a doctor who thought it was a good idea to have a spinal MRI.  Lo and behold, a big old lesion in my neck causing me all kinds of trouble.  Also, be persistent with the doctors.  Do not let them stop checking until they have figured out what is wrong with you.

Posted 5/15/2009 1:57 PM (GMT 0)
i def should go see a real eye dr. If anything at least to rule things out, and with the light flashes, a very good idea--thanks :).. when it comes to the mri, i had requested it from my primary md, so when i got to the neurologist it was done, to save me a step. I requested brain and spine, with contrast and an mra as i do get migraines, but he ordered only brain mri without contrast. Would the contrast make a difference?
Posted 5/16/2009 1:38 AM (GMT 0)
Nope, the contrast does not help to locate lesions.  If you have a lesion or several, the contrast dye crosses the blood/brain barrier to indicate wether or not the lesion is active.  If it is active, it is very white.  I now request my MRIs without contrast as that dye is not real good for you.  I don't need that.  I am willing to guess by my clinical symptoms whether or not I am inflammed.
Posted 5/18/2009 8:32 PM (GMT 0)
Monday p.m.

 

Dear Nurse Jenn:  As has been discussed here and everywhrre else amongst MS patients, fatigue is THE #1 problem with MSers.  I take a drug...Provigil....and it kinda helps.

 

Am I correct everyone, about the fatigue?  And no one can understand the depths of our fatigue.....unless we are another MS patient.

 

Are you satisfied with your neuro?

 

John

Posted 5/18/2009 8:50 PM (GMT 0)
Hey John, thanks for the reply. My fatigue is terrible--i hope the dr gives me something for that. I have not seen my neuro yet. I have an appt on june 12th.
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