Lyme Disease????

[tooshy42]

I am a 42 year old female.   started out with tingling, numbness on the left side of my arm. It also feels very heavy at times along with twitching in my fingers and hands. I also developed tingling, numbness, burning sensations down my leg. Later pain was in my tailbone and butt area.  I managed these but became a little frightened when I started having a "pulling" or tightness feeling on the left side of my face.  I went to my primary Dr, she immediately ordered a CT scan and MRI of my brain.  Both came back normal and she sent me to a neurologist.  The neurologist said it was stress and nothing to be concerned about.  None of this went away but would wax and wane.  I let it go for a month or so and then I had what I thought was a sinus infection/ear infection, only to find out after the xray was taken that I had neither.  However, I had extreme pain and fullness in my face and ear along with the off and on pulling and tightness.  I kept asking my doctor if it was possible I had a pinched nerve because I also had neck pain on the left side.  She ordred an MRI of my cervical spine  Revealed some herniation of several discs.  Nothing to be really concerned about according to my doc and she said it would not cause my face pain/symptoms. She sent me to a orthopedic doctor, first one told me I needed immediate surgery and scared me half to death with fear to move my neck the wrong way or I would sever my spinal cord.  Got a second opinion, he felt nothing serious and to wait and see if my symptoms progress or go away, see you in 3 months and ordered a MRI of my lower spine due to the leg and butt pain.  Of course, he put me at ease and I chose to beleive the non-surgical option.  After this appointment, my lips started to experience numbness along with my tongue and nose.  It felt as though I had been given a shot of novicane at the dentist.  I called the 2nd ortho and told him this and he referred me to a different neurologist.  Neuro doc looked at brain MRI and cervical MRI, and did testing for MS and other things.  He felt confident it was not MS and that he did not know what was causing this.  He did nerve and muscle testing on my left and right arm.  All normal.  He said face pain may be from trigeminal neuralga(sp?).  He put me on Tegretol and said see you in 3 months. None of these symptoms have gone away and I now am experiencing extreme pressure in my chest and have constant indegestion, which i have never had before along with pains that take my breath away in my rib cage and back.  Have had stress test and it was normal, so it appears to not be the heart.  Im very frustrated and concerned that something is being overlooked. I have had what seems to be every test imaginable and nothing yet has explained my crazy symptoms.  I do not have my doctors results from the lower spine mRI yet but  the report they gave me  states a hemagioma was incidentally noticed at the T12 disc area.  Don't know if that is significant for any of this or not.  I know this is very long but any help would be appreciated.  Desperate for answers and relief.
Reported Report

[patsy10]

Welcome to MedHelp.  What you describe is very similar to much of what I have/had.  I really know how frustrating and terrifying this is.  I ended up with several misdiagnoses and an unnecessary surgery.  If something objective is not found on testing you will get  one or more of the following diagnoses....anxiety, depression, CFS, FMS and or others.  A huge percentage of us here have gotten many or all of these diagnoses.  I would not let anyone talk you into "anxiety" as being the cause.  Only you know what your anxiety level is.  There is a huge amount of anxiety caused by these neuro symptoms.  They are very scary.

The hemangioma you have at the t 12 level could affect you from there down but it does does not move up.  The cervical herniated disks can affect you from that level down but again not up.  The only exception being the high cervical disks (c1-2). One of my neurologists went over this in detail with me.

Trigeminal neuralgia can be caused by lyme as well as Bell's palsy.  So can all of your other symptoms.

Have you been tested for lyme?

Do you live in a lyme endemic area?  You can still have it if you don't.  It's just more likely if you do.

Do you remember a tick bite, rash etc..???

[patsy10]

I meant to say lyme can cause trigeminal neuralgia and Bell's palsy.

[tooshy42]

I only recently heard of the possibility of lyme disease on this website. So no, I have not been tested. But most definetly plan to ask for a test from my doctor.  I think she thinks I'm crazy and sometimes I think I am, especially when I try to describe the symptoms and none of them seem to make sense or sound connected.  

I have had many tick bites over the course of my lifetime but never noticed the "bullseye" rash afterward.  I have had the site become rather red and swollen.  I never thought much of it though.  

I'm not sure if my state is a lyme epidemic area or not.  I live in Missouri.  

[JackieCalifornia]

Are you in SW Missouri?  There is a doctor there said to be very good with  Lyme.

And YES, there is a special strain of Lyme in the midwest.

And NO, you are not crazy, but Lyme can make you think you are.

Let us know if you need the doctor's name.

HANG IN THERE.