SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Mystery nerve condition
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
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Mystery nerve condition

Hi! I'm just joining this group in hopes I can get some more insight into my undiagnosed medical condition. I have had some type of nerve condition for almost a year now.  I have many other symptoms and was tested for many things,and I'm receiving some treatment for them.  However, my nerve pain has not let up. No doctor has been able to connect this nerve condition to my other illnesses. I have tingling, numbness, pain, and weakness symptom on the left side of my body including both legs, but it's worse in my right foot and calf than my left. I can't stay on my feet very long without the nerve pain making my legs very painful. Standing still and walking are both nearly impossible for very long. So my mobility has become very limited.

My first nerve conductor study was done early last fall. This doctor only tested my left side and found no nerve damage. He dismissed me, telling me nothing was wrong with me. I could barely walk and needed a wheelchair to go anywhere. But he found nothing wrong.

Several months later, same persisting condition, I had another nerve conductor study done. Once again only on the left side, even though I clearly stated it affected my right foot more. That test was to rule out a MS diagnosis. (my brain scans were good).

So, can you tell me what I'm doing wrong in not getting the testing I need? I'm  not even sure a nerve conductor study is the right test for me, since nothing came back positive for nerve damage on my left side. Can you tell me why they would not test both sides of my body to get a baseline at least?

My GP now thinks it "could be" peripheral neuropathy but doesn't want to send me for more tests. He also doesn't want to give me any medication for the pain and over the counter meds don't work. I'm out of ideas and feeling really defeated. I'm afraid I've had this so long it won't go away. He sent me to a physical therapist for Rebuilder therapy. I've had 8 sessions and I don't feel any differently. Has anyone had success with this therapy?

I appreciate all the advice I can get. Thank you so much!

2 Comments
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1530171_tn?1362547225
Hey Dina.
It gets frustrating sometimes, as Neurology is very complex!

For a dx you need :
1.  NCS (nerve conduction study )
2.  EMG (electromyography)
3.  Spinal tap and Blood testing for  anti-GM1 anti-GD1a anti-GQ1b.(my suspicion)
4.  Blood testing to rule out certain A/I conditions.
5.  Clinical neurological examination.
I suspect that some of the above where not done. (again, I don't have the benefit of an actual examination)

What other conditions do you have? What  medications are you taking?
Is there any physical activity, that you can do, like swimming for example?
Your body needs to move, as activity engages so many different systems in the body and is an integral part of normal biological functioning.
Please let us know more about your overall situation.
Wish you well.
Niko
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Avatar_f_tn
Sorry to hear about your pain. It sounds like you are justifiably frustrated.

What "other illnesses" do you have?  

Have you had an MRI of your spine?

Do you have any doctor visits or tests coming up, or have you just been left hanging?

(It drives me crazy when a doctor can't find anything in an obviously hurting patient and sends them away, as if the doctor knew everything there was to know and therefore the patient's symptoms must not be real.)

There is a good variety of experience here, but we could use a bit more info in order to offer helpful suggestions.
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