Goal is to get diagnosis in 2010!

[renschwa]

Hello all-

Well, it looks like I will now be a regular around here... I started 2 months ago with symptoms in my left calf- soreness/spasming. This led to other strange symptoms- tingling in hands, sharp pains in hands, and legs, like in my hamstring and glute. I get a feeling like a hit my funny bone but it is in my neck. I've also had burning pain in my shoulders/mid-back/neck. All symptoms come and go. One day it will be hands, one day neck and so on. Thinking it was initially sciatica I went to an Ortho who did MRI's of my lumbar and cervical spine. Today my ortho said I do not see anything on your MRI that I can help you with so you should see a neuro. I'm guessing maybe he saw lesions or something of concern?  Does lesions on your spinal cord guarantee it is MS? Just wondering b/c we live in deer country out here in Bucks County PA and have worried about Lymes disease from the start of all this. I already have found a LLMD Neuro doc who I will consult for a 2nd opinion. I'm also seeing at Neuro in Philly. Just wondering if it is worth pursuing the possibility of Lymes from what you all have experienced? Or if the Neuro says hey there's lesions here on your spinal cord, you have MS, is that a certain diagnosis? Sounds from what I've read around here MS and Lymes are hard to distinguish/diagnose.

I wonder if I'm just in denial about the MS but I really do wonder as on any given day we have 4 deer in our yard here in Bucks County PA!

I really welcome your advice/support in the coming weeks.months. I'll be a regular here. You all have already been helpful.

Happy New Year to you all!
Renee

[Quixotic1]

Sounds like you're headed in the right directions.

Q

[renschwa]

Thanks!!!! People in the Lymes group have told me this seems very Lymes like too. I also live in a Lyme hot spot from what I've been told.

My symptoms kind of started off more on the left side but I def. do have symptoms on both sides. I get sharp pains more often in my left leg/calf/hamstring than the right but it does happen on the right. Same thing with my hands. The burning pain in my shoulders/back started on my left but gradually included the right side too. One of the people in the Lymes group has had most if not all of my symptoms so no matter what the neuro tells me I will not quit at one neg lymes test if that happens (haven't been tested yet).

My neuro is calling me monday with an appt. He ordered blood work and a brain MRI. I also have an appt with a internal med doc at U-Penn Jan. 12th. I got the name of a LLMD Neuro at a nearby hospital that I will consult for an opinion as well. Like you said, this neuro might not have this right so I will go for 2nd, 3rd opinions if need be.  

That's where I'm at in the process... I've had a lumbar and cervical MRI thinking it was a disc/nerve issue at first. My ortho suggested seeing the neuro.

[Lulu54]

Ooops! My mental midget status hit yesterday - Q is absolutely right that Lyme  can cause spinal lesions.  I'm so glad one of my new years resolutions was not to NEVER be wrong again!! :-)

-Lulu

[Quixotic1]

We discussed the common mistake that we see from neuros about pain in "Lies My Neurologist Told Me."

http://www.medhelp.org/posts/Multiple-Sclerosis/Lies-My-Neuro-Told-Me-or-Common-MS-Myths/show/1074879

Quix

[Quixotic1]

Aaarrrrggg!!!!


This neuro does not know MS!!!!

This neuro does not know MS!!!!

Pain is a common and often major feature of MS!  You are not in good hands with this neuro trying to tease out your diagnosis.  His first bit of knowledge that seemed to exclude you is WRONG.

With regard to Lyme Disease, traveling sensations are VERY common from what we have heard from people with that infection.  So it doesn't sound like he knows Lyme either.  This is one of the features that can separate Lyme from MS sometimes.

Spinal lesions are well-described in Lyme Disease.  It is one of the few mimics - along with Sjogren's, NeuroSarcoid and a couple others that DO cause spinal lesions, along with brain lesions.

Quix

[renschwa]

Thanks Lulu

I have already spoken to a Neuro from Philly. My hubby works at Drexelmed so I'm first going to a Neuro there as I'm getting VIP treament there. The neuro actually called me and talked ot me on the phone today!  From what I told him over the phone, the Neuro said it does not sound like MS b/c often MS does not involve pain. I was telling him of the shooting/achey pains in my hands etc. He said the travelling nature of my symptoms does not sound like either MS or Lymes. My symptoms are weird.. it could be neck discomfort for like 3 days, and then that goes away and I'll have 2 days of hand pains, then one day it is mostly in my legs- that kind of thing... Never the less, he is ordering blood work and a brain MRI for me. Today,I was given the name of another neuro that is a LLMD who I will most likely see for a 2nd opinion if need be. I'm also starting off with a new internal disease doctor from UPenn. My appt with her is on Jan. 12th.

[Lulu54]

Hi Renee,  While we hope you don't have this MiSerable disease, you can hang out here as long as you want.  Spinal lesions don't happen with Lyme disease  but you don't know yet that you have those.  It may be that your Ortho simply does not know what is wrong.

I would stick with the appt. you have with the Lyme doctor, in light of the fact that you live in a Lyme hot spot.  

Yes, both MS and Lyme are hard to dx, but the good doctors can put your history and symptoms together and plot a course of treatment.
Then again, you may have something else entirely different.

See you around.
Lulu