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doctormetals
@doctormetals

Posts: 6
Joined: May 06, 2016

Nerve damage and other issues - no root cause

Posted by @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.

REPLY

Welcome @doctormetals. I took the liberty of moving your message to the Brain & Nervous System group. I think you may have a better chance at finding people with similar symptoms here.
@kmintx describes a similar issue with muscle weakness and freezing up here: https://connect.mayoclinic.org/discussion/i-have-a-problem-with-my-buttocks-hip-muscles-that-no/

I’m tagging @rabbit10 @johnwburns @bobsconnect @islandhippy to see if they may have something to add given the neurological nature of your symptoms.

Why did you stop Intravenous immunoglobulin (IVIG) treatment?

@colleenyoung

Welcome @doctormetals. I took the liberty of moving your message to the Brain & Nervous System group. I think you may have a better chance at finding people with similar symptoms here.
@kmintx describes a similar issue with muscle weakness and freezing up here: https://connect.mayoclinic.org/discussion/i-have-a-problem-with-my-buttocks-hip-muscles-that-no/

I’m tagging @rabbit10 @johnwburns @bobsconnect @islandhippy to see if they may have something to add given the neurological nature of your symptoms.

Why did you stop Intravenous immunoglobulin (IVIG) treatment?

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Thank you for your reply. I stopped the IVIG because of the insurance
company only approved it for 3 months. When I see my prescribing
neurologist I am hoping that he will recommend re-starting with the IVIG
treatment. Insurance companies have not been helpful. Thanks for moving my
message to Brain and Nervous system group.

@colleenyoung

Welcome @doctormetals. I took the liberty of moving your message to the Brain & Nervous System group. I think you may have a better chance at finding people with similar symptoms here.
@kmintx describes a similar issue with muscle weakness and freezing up here: https://connect.mayoclinic.org/discussion/i-have-a-problem-with-my-buttocks-hip-muscles-that-no/

I’m tagging @rabbit10 @johnwburns @bobsconnect @islandhippy to see if they may have something to add given the neurological nature of your symptoms.

Why did you stop Intravenous immunoglobulin (IVIG) treatment?

Jump to this post

My first rheumotologist I saw 4 years ago, rated the best in state (AZ) many years running, wanted to start me on IVIG, but hit a wall with my insurance company. They required longer Rx treatments (cheaper) alternatives to be ruled out first. I had tried 4-5 different meds with little to no improvement. I had SED rates in the mid to high 90s and she couldn’t get them down low enough even taking 80mg of prednisone. I gained 70 lbs in 2 years. I couldn’t walk on my own, drive, or work (had to retire). 
I eventually changed insurance company and went to Mayo and the rheumotologist there put me on Cell Cept (mycophenalate) and Rituxamab infusions. My condition improved immensely. All my blood/urine work leveled off to normal and reduced my flare-ups. It’s been over 18 months. However, every time I change supplemental insurance companies, he has to write a special report to them why I need these medications before they would approve them, even though Medicare would. He’s had to do this 3 times already. I’m just waiting for the other shoe to drop when they won’t cover my special med at $700 a month and $12,000 per infusion.
You just have to be vigilant and hope and pray as I had to. There are doctors who care and insurance companies out there that will help where they can. I had to depend on my wife for everything. It took over 4 years, 40 plus doctors, dozens of ER visits, and 30 different meds before I finally have a semblance of a life.
Now I have 2 beautiful grandsons under 3 yrs old that I can enjoy my retirement years with little discomfort. 

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.

I am just wondering — Did you ever get a diagnosis?

@workwithkids

I am just wondering — Did you ever get a diagnosis?

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Non at all

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

@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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Thank you for your response and for sharing. I have not seen a Rhematologist
and will plan to do that. My condition appears to only affect my motor
part of the nerves with no sensory affects or pain. I will keep you all
posted.

@workwithkids

I am just wondering — Did you ever get a diagnosis?

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No, still no diagnosis.

@doctormetals

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

Jump to this post

@doctormetals here is the contact information to request an appointment at Mayo Clinic http://mayocl.in/1mtmR63

I can understand your hesitation about traveliing. You may be interested in reading this thread about visiting Mayo Clinichttps://connect.mayoclinic.org/discussion/im-traveling-to-rochester-mn-from-kansas-city-mo-for-the-first/

@bobsconnect What experience or advice would offer about going to Mayo in Rochester?

@doctormetals

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

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

@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?

@doctormetals

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

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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