new to the forum..looking for answers and support :)

I am otherwise healthy, 32, and I have had numbness and tingling that started in my R leg about a year ago. The tingling and numbness slowly spread over time to both legs and arms, and then to my face and scalp.
I had what I believe to be an "episode" that started Sept 1st and lasted 8 days. During this time my legs felt heavy and I was completely exhausted by daily activities.
I got a neuro referral from my family doc during this time.
Before I could get to the appointment, I had another, much worse, "episode" starting Oct. 8th, and was hospitalized for 5 days due to weakness and falling. They did an MRI of my brain and cervical spine, and did an EMG of my L arm and leg (both were clear) and countless blood tests which were all clear. They put me on Neurotin and have a EMG scheduled of my R side next week.
I am stil not myself and cannot walk for more than 5 min or so @ a time.
My doc said no to MS bc of no lesions and I am  presenting bilaterally. My R side is worse, but it said it shouldn't matter.
What do y'all think? I'm going crazy not being able to care for my family!

[Londres70]

Have you had an LP(Lumbar puncture) done?  Screened for Lyme's?  

The other possibility is MND(Motor Neuron Disease).  

[Mlkjmom]

I have not had an LP yet. They had talked about doing one when I was in the hospital. I think they tested me for Lyme dx...isn't it just a blood test, or is there more involved?
I'm trying to stay positive but it is so frustating no having a diagnosis!

[Londres70]

You should have the LP done, especially if nothing is "popping" on the MRI.  I would recommend imaging your lumbar spine as well.  

Yes, the testing for Lyme's is a blood test.  

Do you recall doing anything or going anywhere in particular before this problem started?  i.e. traveled somewhere foreign?  a fall?  

Yes, it is very frustrating not to know what you are dealing with.  I completely understand that.  

[Mlkjmom]

I asked my Neuro doc for a Lumbar MRI, and he said it is not needed d/t the sx being in my face and arms. (I've had low back pain for years, but he thinks it is not related)
When I asked if he was still planning on an LP he said "maybe".
I have fallen a couple of times @ work in the past year, but I haven't hit my head or anything. We took a family vacation to South Dakota but that is all the traveling I have done recently.

[Londres70]

BTW:  Welcome to the Forum dear.  

Viral panel done?  i.e CMV, EBV, HSV I, II VI  

ESR and CRP labs done?

[Mlkjmom]

I know they took 10 vials of blood... not sure of all the specific tests.
I do know my thyroid, kidney and liver functions, A1C, CBC, RA, Lupus, B12, were all normal. And I was neg. for mono. That is all I can remember. I need to get a copy of my chart from when I was in the hospital.

[Londres70]

I am thinking this is some type of MND, which I hope I am COMPLETELY wrong about that or some sort of PND or PND secondary to something viral.  Another thing came to mind, Guillain-Barre Syndrome.  

You definitely need NCS, an LP and an EMG done.  

Sorry to ask so much but hopefully I can be of some help.  

[Mlkjmom]

Ask Away!!!
I am a nurse, but I work in Pulmonary, so Neuro isn't exactly my specialty. So, I'm not even sure what ?s to ask!
I'm getting another EMG of my R side on the 15th. My L side came up clear.
I believe they r/o G-B @ the hospital.
How do I "make" my doctor order an LP? I've asked and he said it is not needed.

[Mlkjmom]

Ask Away!!!
I am a nurse, but I work in Pulmonary, so Neuro isn't exactly my specialty. So, I'm not even sure what ?s to ask!
I'm getting another EMG of my R side on the 15th. My L side came up clear.
I believe they r/o G-B @ the hospital.
How do I "make" my doctor order an LP? I've asked and he said it is not needed.

[Londres70]

Hmmm, as a nurse, you know that is an "art form" trying to get a physician to agree to something he thinks is not necessary.  I am a nurse as well; background Oncology/Neuro.  The only thing you can do is eep "pressing" the issue.  I mean, everything else is clearing and what is there to lose?  At this point, he hasn't really figured anything out for you while you are the one "dragging your legs" and able to walk "5 mins max" when you are having episodes.  I think the LP should be ordered if other testing is clearing.  

NCS done as well? (Nerve Conduction Studies)

Let me know if you had a viral panel and anti-inflammatory markers done.  

[Londres70]

sorry, the eep=keep.  oops!