Uncertainty..

[lux415]

I figure I've been pouring over these forums for years trying to find answers and it might be time to finally post. I am 25 year old swf with intermittent neurological symptoms starting in 2008. I have an aunt with progressive MS who was diagnosed in her 20 and now has severely progressive MS and cannot walk, so topic is very scary for me.

Just a bit on my history...

2008: My symptoms started suddenly in the summer of 2008 when my right leg when completely to pins and needles. This lasted a few days and was concerning but went away. I was studying abroad at the time so I had to wait until September to visit the neurologist when I got home. At this time, my the radiologist said I had three legions on my brain and that it was likely indicative of MS.

The neurologist looked at the films and said no, there is only one lesion there and based on your symptoms it is probably from natural causes and NOT MS. I had a clear MRI of the spine, passed my Evoked Potential test, and normal neurological test (i.e. jump on one foot, walk in a straight line, etc.) I got a second opinion and that neurologist told me it could be MS or it could not be, we have to wait and see. He suggested that I follow up with another MRI in six months and watch my symptoms.

2009: This whole series of events was pretty traumatizing for me to say the least, but I did my best to go on living my life as normally as possible. During this time, I had intermittent symptoms like tingling and pins and needles that would come and go. This was not like an "attack" of tingling that would persist for a few days and then gradually heal, but more like my limbs would "fall asleep" much more easily than I ever noticed. Or my foot would start to tingle but I could always shake it out. Overall I just felt different, like these things weren't a problem but just not normal.

My most unusual symptom during this time would happen at night, where often I would wake up with a limb totally asleep, or more commonly, just the last two digits on my hand would be tingling. I also experienced ticking and twitching muscles in little spots all over my body. The twitches usually were just a few "jumps" and never lasted longer than a minute or so. None of my symptoms were persistent or severe enough to really warrant more action on my part. I followed up with another MRI that showed no changes, and a normal neurological test.

2010: Since I was still noticing these annoying sensory symptoms, I started seeing a new neurologist (after a move). He followed my case with a bit more compassion but couldn't really pin point what would be wrong with me. He did a test of my nerves to see if there was anything there by putting little shocks through my feet and testing my nerve reactions. All of my nerves responded well. Another MRI with no changes.

2011: Yet another move to a new state with a different neurologist. Don't you just love telling your story over and over again? So this year I had some strange things happen. I got a UTI in February that wouldn't go away. The infection finally went away but the sense of urgency persisted, especially at night. I went to the urologist and did a test that showed I was emptying my bladder completely. The doctor said sometimes your bladder goes wacky after a bad UTI and it can cause persistent urgency. She gave me vesicare and it got better.

Just about a month ago, I noticed my right leg felt "different." Not weaker, not tingling, maybe a bit stiffer. Walking on it was just more of an effort and I was feeling just all around tired and bad. This lasted about a week. I thought for sure this was an "attack" and was pretty much convinced of MS at this point. So I see another neurologist here. My symptoms are always so vague and fleeting I feel like no one believes me, especially because no one has had the chance to follow my case for very long. None the less he orders another full MRI (w/wo contrast, brain and spine). This time it is completely normal and they don't even see the original first lesion. So basically they say, no need to follow up you're fine.

However, I am still experiencing these intermittent sensory symptoms. My right leg seems to be back to normal. It's possible that I just hurt it or was extra stiff that week. Nothing is persistent all the time, but on any given day I feel some sort of tingling, pins and needles, twitching or ticking somewhere in my body, mostly in the limbs.

I guess at this point I would like someone to weigh in on my situation. All of the test results and clinical examinations seem to be leaning towards the "you are a hypochondriac" answer, but something about this doesn't seem right. I would feel horrible if I didn't listen to my body and this turns out to be MS. Any input from this community would be much appreciated, you all seem to be very understanding and knowledgeable.

Thanks and best to all!

[essdipity]

Welcome to the forum, lux. No wonder you are so confused and concerned, with so many unexplained symptoms.

In my opinion, though, this doesn't sound like MS, though of course I may be wrong. My chief reason for saying so is that MS doesn't have symptoms that move around that way, tingling or pins and needles here for a short while and then there. Also, limbs 'falling asleep; are not an indicator of MS.

If the last two fingers seem sort of numb, that is likely to mean you have pinched your ulnar nerve, maybe because of the way you were lying.

Another thing is that small twitches moving around the body sound much more like benign fasiculation syndrome.

I do agree that all these sensations are not 'nothing,' but I think you should look elsewhere for answers. Your primary doctor can run tests for MS mimics, so I also agree you should stay close to him or her.

Best of luck,
ess

[sllowe]

Lux415,

Hi there,

Thank you for jumping in here with us, and telling your story again. I'm sure it's not something you really feel like doing with your history of doc changes and moves. I'm sure you left some out too. Thanks too for breaking up the paragraphs made it very easy to get a feel for what you've been through.

So, couple questions for you. Did you gather reports and imaging from past MRIs? And any reports from labs?

Of course we definitely will not be able to tell you if this MS or not, but we can surely look at the whole picture and offer our best for your next steps.  Lesions can come and go in MS that is for sure. Many of us have experienced this.

Do you know if the MRIs of the past, were compared to the recent?

Sure would like to help you but want to get a bit more info. Don't be scared, your amongst most knowledgeable, and compassionate folks here now :)

Thanks for joining us,

-Shell

[Sumanadevii]

First of all having a relative with MS unless it is a first degree relative(mother, father, sibling) makes no difference in if you will or won't be saddled with this horrid disease.

I do think finding MS early gives a better chance of stopping the progression and I think getting more than one opinion is smart.  My questions for you...Have you talked with your PCP and has he/she run tests for lupus and other MS mimics?  Next question, has the MRI of your spine been run on a 3t MRI or a 1.5?  Due to personal experience of mine being missed on my spine with a 1.5, I always throw this question in.

If you visit this new neuro and how he explains the symptoms to you makes no sense...I would encourage you to keep looking.  I would also stay close to your PCP that may just find the key to your problems.

I wish you the best.