Numb from the waist down

[SOONERMOM]

Hi everyone!

I have a friend who has recently gone numb from the waist down.  She is 38.

A little history on her, she had been experiencing significant joint pain a year ago (that had resolved)...about the same time that I started going numb.  She also has signs of  hypothyroidism and hormone imbalance (very irregular bleeding).

I called to check up on her and she told me that they didn't do her MRI right (somehow, just did the long view, not slices??)  They really haven't done much of a work up on her, never even tested her reflexes.  

I am freaking out for her (because of all that I have been through).

I was trying to tell her how he should order the next MRI, MS protocol with and with out contrast.  That is is better to have the closed MRI if they are looking at the spine. (I don't think we have a 3T in our area)

This has lasted at least a week and it seems like they have the attitude "maybe it will go away"

I think she is in a daze and I remember it well.

I guess I am just  wondering what the differential diagnosis would be here?  transverse myelitis/MS/ (I think possibly lyme)...could hasimotos thyroiditis do this?  Is it  possible that it could be nothing serious??  She told me last  night that she is thinking MS.  We both cried.

I am upset at the lack of urgency that she is receiving from the medical community!  She has difficulty walking and stairs are impossible.  She says it is also painful and feels like she is walking on pegs.

I know you guys understand how stressful all this is, thanks for listening and for any input that you may have!

Stacey

[SOONERMOM]

Quick Update:

My friend's blood work came back and the only positive was the lyme ELISA.  They are telling her that it is a LAB ERROR and that we don't have lyme disease in Oklahoma...which sounds kinda familiar to me.  I will let you know what the Western Blot  says.

She is now having to use a cane sometimes when she walks.  They wouldn't give her any antibiotics until they get the WB results.  Of course I had a CDC positive WB and they didn't offer me any antibiotics..LOL

[cry1987]

That's exactly how i was diagnosed with ms, It started in left foot, like a my feet were hurting on bottom because of shoes or walking to much, then next thing i know,  i was numb from waist to toes, and it was a very awful feeling, like when you went to the bathroom and the way your skin just felt loose and dead, very scary, it took a week in hospital, 3 mri's, spinal tap then was diagnosed with ms, that was in march 2008, 6months later, numbness still in left foot pretty good, alittle in right, but at least it left the rest of body, i am taking rebif, and i know the numbness left out of my body other than my feet quicker than 6 months, I just hope it don't come back, hope this helps, good luck!!

[SOONERMOM]

I am doing really well, thanks!

My friend also says that the level of numbness is different on each side??  I guess one side is numb further up than the other.  Is it important that she has been bleeding vaginally for over 20 days?  They just don't seem so concerned and told her that she could have Von Willebrand..which I told her since it is inherited that she would have always had this problem,,,not something just out of the blue like this??  

I guess I was fortunate to get an MRI ordered correctly on me when I just had a spot of numbness on my face.

I don't want them find anything on the MRI, but if they don't I am afraid they won't know how to help her....maybe order a spinal tap,  I guess?  She needs a good neurologist!  (The best one I saw was the MS specialist.)

Well, anyway,,, thanks for your comments and I will let you know what happens!!

Stacey

[Quixotic1]

Hi, Kiddo!  Great to see you!  For all the newbies, Stacey is a veteran of the forum, who discovered her symptoms are caused by Lyme disease and is currently on antibiotic therapy.

Stacey, it sounds like your friend not only has numbess, but also some weakness.  I can't believe her doctors aren't all over her like white on rice!  She needs and deserves an immediate MRI of her entire spine.  And I would do the brain for good measure.

Yes, she needs the whole shooting match of blood work, MRIs and good neuro exams.  For instance, this could be something like Guillain-Barre Syndrome.  Her reflexes would be decreased or absent entirely.  Or this could be Transverse Myelitis and they would likely be hyperactive (I think), or the problem could be infectious (and Lyme is only one of the possibilities). But, my feeling is that a loss of sensation this global in the lower extremities is much more likely to be a problem in the spinal cord than a systemic, infectious or metabolic problem.

Example : my mom is totally numb from the upper calves down bilaterally.  She has lumbar stenosis.

A new and more interested set of doctors is definitely a good idea.  Yeah, maybe it will go away, or maybe it is something very serious in the spinal cord (most likely the thoracic) that will only get worse and they will miss an opportunity to treat.

I'm with you - OMG!!

I hope you can help get her to other more involved doctors.

Keep us informed and how are YOU doing?

Quix

[JulesL5S1]

HI, welcome to the forum.  I'm a limbo lander (someone with a lot of symptoms and no dx) and am home for the day trying out a new medication so I'll jump in!

Sorry to hear about your friend.  It's really scary when our bodies don't work right.  I'm one of those who puts things off and according to my new neurologist - Wow, I rationalize away everything.

If you haven't yet reviewed the Health Pages in the top right corner that is a good place to start.  There is a page on MS mimics and the My PCP thinks I have MS what now.

Remember that it is possible to have multiple things wrong.  Gee, if we're this lucky then why can't we win the lottery!

I have hypothyroidism as do several others on this forum.  That is an easy blood test that a PCP or OB/GYN doc can do.  Then the treatment is easy.  The positive change is radical.  Having untreated hypothyroidism can make other symptoms worse.  

Also, her PCP should run lots of blood tests to check for many things.  This part of the normal process to rule things in/out.  

With respect to MRIs, in the Health Pages you will see the one about Can you have MS even though you have no lesions.  Not all lesions are visible.  

Lesions will not show in the lumbar spine - there is no white matter.  A MRI of the lumbar region will show disk problems that can be causing the weakness in the legs and for someone with weakness in the legs a lumbar MRI is a first step.

Actually when my problems began back in 2000 I injured my back at the L5S1 level.  I also had undiagnosed hypothyroidism that wasn't discovered until 10 months later.  My hypothyroidism and I do have Hashimoto's also was at a level the highest my endocrinologist had ever seen.  He retested because he didn't believe the numbers.  So multiple things can complicate a dx.  

Your friend is lucky to have you by her side.  This is likely to be a long process.  The blood tests to rule out a thyroid disorder, anemia, vitamin deficiencies, etc is a good first step.  It is comparatively inexpensive and yields fast answers.  Then the lumbar MRI.  Then the next step could be the brain MRI and/or cervical MRI.  The doctors note will have to say to use the MS protocol or the facility can't.  The Health pages have a section on MRIs.

I'm not a doctor, however being in limbo land I understand the journey and complications along the way to a correct dx.  This is a good forum for friendship and advice.  Take good care of yourself and your friend.  cheers