In limbo...unsure about how to proceed

[emmas1]

I have been experiencing numbness/tingling on L foot, both hands, in my r shoulder blade for 2 months.  Sometimes I get numb spots on R leg inside the knee or outside the thigh.  Some spots are numb for seconds, minutes, hours, or days.  It's completely random.  I also experience like warm flushing sensations in my feet and hands that only last for a moment and then disappear.  I also occasionally get a chilly goosebump feeling on my scalp or leg but I don't have any goosebumps.  Some days I have no symptoms but most days I do.  I haven't noticed my symptoms getting worse in the heat.  I sometimes do feel like my R hand is weaker or crampy.  My only other problem (which has been going on for at least 2 yrs) is a nagging, discomfort in my R hip...it came on when I was running and any exercise for extended periods exacerbates it.  The joint feels stiff and painful if I've been sitting in one position for a long time and get up and move around.  It starts to feel better after moving around for a while.

I have been to a neurologist who says neuro tests are normal.  Brain and cervical spine MRI, w/ and w/out contrast came back normal on a 1.5T MRI...  Only bloodwork that can back abnormal was ANA which was 1:320. I've already had thyroid, B12, tests which were normal. I've also had EMG test on L hand and foot which were normal.  Neuro has referred me to a rheumatologist for possible lupus, etc.  

What should I do?  
I just don't know how to proceed.  A friend of mine has MS and I'm considering taking my MRI results to her MS specialist to ask her opinion.  Should I have a LP or VEP tests?  Should I push to have a repeat MRI in the next 3-6 months?  

I want to believe I don't have MS but my symptoms haunt me and make me wonder what the heck it is?  Having read this and other boards extensively it seems it's not unusual to be in such limbo.  It *****.  I'm 33 w/ 3 young children under 4 and I just need some answers.

What would you do?

[samandsprout]

Hi, there.  I am in limbo, too, and a mom of 2 young kids.  I've been in this limbo for 6 years, but I do have lesions and all mimics have been ruled out.  It's a scary place to be, I know.  If I have something that will benefit from treatment, I want to be able to move ahead and treat it!  

Your symptoms to me don't sound 100% like MS, and your normal MRIs should put you at ease, but I also know what you mean by symptoms haunting you and that any unexplained symptoms can make you worry so much it's almost impossible to go on without pursuing a diagnosis, whether it be MS or not.  I am just not one who can easily play the wait-and-see game.  So, I personally keep pushing for more tests.  But then again, I know I have lesions, so I know there's got to be something going on.  

If you've had any vision problems, a VEP is a really easy test and could help put your mind more at ease.  I would definitely get the bloodwork done to rule out any and all mimics like Lupus.  The LP is not the most fun test, so I would wait on that one, because a negative LP doesn't rule MS out and is more likely to be negative in the early stages of MS anyhow.  But if it would help put your mind at ease, you could always pursue it?

I hope you can find the answers that you are looking for soon.  This community is a great place to educate yourself and to find support from other people who have been through the same thing.

[steph74]

I'm no expert but it sounds more like RA to me, especially the pain in your hip that gets better with movement and the elevated ANA.  I think it's good that you're going to a rhuematologist.  See what he/she has to say and then go from there.  You can always go back to a neuro if the rheum. doesn't think there's anything going on in that field.

Good luck and let us know what you find out!  There are many of us in limbo here and it's always helpful to share experiences!