1. < Spine Health

Nerve damage and other issues - no root cause

Posted by doctormetals @doctormetals, May 6, 2016

I am a male 55 years old and have been very active all my life. Two years ago I started having issues. No root cause to date. I have nerve damage, apparently lumbar sacral region that has resulted in muscle weakness in my quad/gluteus and have foot drop. It started suddenly and has deteriorated gradually. It initially affected my one leg and recently I noticed that my other leg is having issues. My upper body strength is excellent. Have done lots of PT and see many neurologist including those at John Hopkins!!. Done a lot of tests EMG, spinal taps, MRI and other more sophisticated tests. All appear normal. I also went through IVIG treatment for three months. This seemed to help I think. Once IVIG was stopped my condition went worse or it may have been a coincident. I wear a foot drop brace and have recently started wearing a KAFO brace. I am going to see my neurologist again but I am frustrated at the lack of information on the root cause. I am making the most of life and need to get to the bottom of this.
Do you know of anyone else with similar history or an expert in this area at MC. Any help, suggestions, information would be appreciated.

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doctormetals | @doctormetals | May 9, 2016
In reply to @doctormetals "Bobsconnect: Thank you for sharing. Having grandsons is probably the best medicine you have. I think..." + (show)
@doctormetals

Bobsconnect:<br />
Thank you for sharing. Having grandsons is probably the best medicine you<br />
have. I think my issue is probably a simple one that everyone is<br />
overlooking. I find it very difficult to understand that with so many tests<br />
no expert is able to provide any insight or path forward. I am now<br />
considering going to the Mayo Clinic in Rochester. A bit nervous about<br />
travelling though. Any insight on what to expect at the Mayo clinic would<br />
be helpful. <br />
<br />
<br />
<br />
<br />
--

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Colleen:<br />
Contact made at Mayo Neurology Dept. Brief medical information provided and<br />
I have been told that I will hear back within two weeks. <br />
<br />
<br />
<br />
<br />
--

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | May 9, 2016
In reply to @workwithkids "Hi - I'm so very sorry to hear about what you are going thru. I am..." + (show)
@workwithkids

Hi -
I'm so very sorry to hear about what you are going thru.
I am new to this group -- but I had similar gradual deterioration of my ability to walk (which worsened in my 50's), while all my lab tests, EMG, MRI, spinal tap,etc were normal. I saw neurologists at the Univ. of MD, Cleveland Clinic, & other medical centers -- without finding a diagnosis. I was put on Lyrica, cymbalta & elavil to help with the neurological pain-- but these offered little help.

After 3 1/2 years, in Jan 2016, i was referred to a Rheumatologist who ran a host of lab tests & i learned that I have CNS Lupus. (It is very difficult to diagnose.) It doesn't sound as tho you have seen a Rheumatologist yet, but i would suggest that you try to see one as soon as you can. They are extremely knowledgeable about many different kinds of autoimmune, muscle & connective tissue diseases -- several that present with weakness & neurological symptoms (as mine did). I wish you much good luck & improvement in your condition! Please keep us posted.

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Hi @workwithkids, I just wanted to add my welcome. Glad to have you on Connect. I also look forward to your contributions to the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/#/!tab=discussions

Searching for a diagnosis for 3 1/2 years is tough. What treatment, if any, are you taking now for CNS Lupus?

REPLY
bobsconnect | @bobsconnect | May 9, 2016
In reply to @doctormetals "Bobsconnect: Thank you for sharing. Having grandsons is probably the best medicine you have. I think..." + (show)
@doctormetals

Bobsconnect:<br />
Thank you for sharing. Having grandsons is probably the best medicine you<br />
have. I think my issue is probably a simple one that everyone is<br />
overlooking. I find it very difficult to understand that with so many tests<br />
no expert is able to provide any insight or path forward. I am now<br />
considering going to the Mayo Clinic in Rochester. A bit nervous about<br />
travelling though. Any insight on what to expect at the Mayo clinic would<br />
be helpful. <br />
<br />
<br />
<br />
<br />
--

Jump to this post

My first visit in Jan 2012 at Mayo Scottsdale was pretty intimidating but reassuring. It was like walking into a high-end hotel, with lobby piano player, modern architecture, and all the individual clinics. That's just the clinic, they also have a full hospital located in north Phoenix. This is not your typical medical facility. I never felt better about my care as I have there. I have consoldated most all my care there and see a variety of different specialties. Their communication is excellent between specialists. I am fortunate to even have a local Mayo medical facility in my neighborhood where I see my primary care doctor with a full lab and radiology department. My condition has improved dramatically and I am happy and enjoying my life again.

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