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darj
@darj

Posts: 3
Joined: Nov 30, 2016

Vice grip on both legs with both feet feeling stiff on bottoms.

Posted by @darj, Nov 29, 2016

I have been dealing with a leg, foot and lower back issue for 6 years now. It started with my right foot feeling like I had stepped into glue and it dried on the bottom of my foot. Skin feels very tight. Then about 2 months later, my legs started to get very tight and ache. I seem to have trouble controlling them when I stand or walk. Feel like I walk on outside of or sides of feet. Now both feet stiff and both legs feel like there is a vice being tighten down on them. I have had 3 nerve tests, all ok, a PAD test which was negative, all the Lymes tests that I know exist. I have osteopenia, had a low vit.D count but have found no relieve or a close maybe dx. Anybody else ever experience any thing like this? I have seen 3 Neurologists, a Urologist, a Rheumatoligist, my GYN and 4 General Practice Drs.

REPLY

Wow — sounds like you are going through a lot. How discouraging to have been to so many docs too — and still no answers. I have idiopathic peripheral neuropathy which causes the bottom of my feet to sometimes feel stiff or like cardboard.

Hello @darj, welcome to Connect. I can only imagine how frightening and frustrating these symptoms must be. Other members on this site have repeatedly said that the best thing you can do is continue your quest for a diagnosis and to not give up.

I am inviting @upnorthnancy, @dolan, and @mollyb1968 who all have osteopenia and may be able to share whether or not they have had any feelings of their feet feeling of tight skin, or tight and achy legs that gives them trouble controlling them when they walk or stand.

@darj, you mentioned that you have had 3 nerve tests. When they conducted those tests, were they checking for peripheral neuropathy? If so, was that ruled out?

I would have to go back thru and see if peripheral neuropathy was the center of focus or not. I was just told that the nerves were ok. Thank you

@jigglejaws94

Wow — sounds like you are going through a lot. How discouraging to have been to so many docs too — and still no answers. I have idiopathic peripheral neuropathy which causes the bottom of my feet to sometimes feel stiff or like cardboard.

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yes that is another description of the bottom of my feet . very stiff and tight. idiopathic peripheral neuropathy aye. are you on any RX or treatments that are helping?

@jigglejaws94

Wow — sounds like you are going through a lot. How discouraging to have been to so many docs too — and still no answers. I have idiopathic peripheral neuropathy which causes the bottom of my feet to sometimes feel stiff or like cardboard.

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I am not taking any medications for peripheral neuropathy. The side effects of many are worse than the problem itself, for me. Some people also experience a lot of pain and are on medications such as Gabapentin. For me, I don’t notice this all the time.

I'm new to Mayo Connect, I can only offer Empathy to @darj. then state my situation as well. @darj's description of feet like dried glue and tightness in legs, is similar to what I've been experiencing,, and am seeking answers. My contributing history is nerve damage with weakness in my left leg & drop foot from a tethered spinal cord. Also have unexplained neuropathy in my feet for 4-5 years (non-diabetic),no pain, thank God. 15 months ago, I had a TKR, both knees. Had all the usual discomforts of recovery, and all were resolved: Except, horrible vice-like tightening and wierd sensations,around my knees, and now, down the front of my legs. Makes walking quite difficult, and it throw's off my balance. Many falls, including a fall in August,with a fractured humerus. My Ortho Dr.has.said this would go away. hmmm… I've had increasing doses of Lyrica, which sometimes takes the edge off, but not enough. Anyone have a clue why this is happening, or treatment? Thanks

@pammiesue51

I'm new to Mayo Connect, I can only offer Empathy to @darj. then state my situation as well. @darj's description of feet like dried glue and tightness in legs, is similar to what I've been experiencing,, and am seeking answers. My contributing history is nerve damage with weakness in my left leg & drop foot from a tethered spinal cord. Also have unexplained neuropathy in my feet for 4-5 years (non-diabetic),no pain, thank God. 15 months ago, I had a TKR, both knees. Had all the usual discomforts of recovery, and all were resolved: Except, horrible vice-like tightening and wierd sensations,around my knees, and now, down the front of my legs. Makes walking quite difficult, and it throw's off my balance. Many falls, including a fall in August,with a fractured humerus. My Ortho Dr.has.said this would go away. hmmm… I've had increasing doses of Lyrica, which sometimes takes the edge off, but not enough. Anyone have a clue why this is happening, or treatment? Thanks

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Hi @pammiesue51 — I wonder if your neuropathy may be related to your tethered cord syndrome. I found an article on the National Institutes of Health site that may explain?

Adult tethered cord syndrome resembling plantar fasciitis and peripheral neuropathy:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3863093/

John

@pammiesue51

I'm new to Mayo Connect, I can only offer Empathy to @darj. then state my situation as well. @darj's description of feet like dried glue and tightness in legs, is similar to what I've been experiencing,, and am seeking answers. My contributing history is nerve damage with weakness in my left leg & drop foot from a tethered spinal cord. Also have unexplained neuropathy in my feet for 4-5 years (non-diabetic),no pain, thank God. 15 months ago, I had a TKR, both knees. Had all the usual discomforts of recovery, and all were resolved: Except, horrible vice-like tightening and wierd sensations,around my knees, and now, down the front of my legs. Makes walking quite difficult, and it throw's off my balance. Many falls, including a fall in August,with a fractured humerus. My Ortho Dr.has.said this would go away. hmmm… I've had increasing doses of Lyrica, which sometimes takes the edge off, but not enough. Anyone have a clue why this is happening, or treatment? Thanks

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Hi, @pammiesue51 — I wanted to add my welcome to Mayo Clinic Connect. Your mention of a tethered spinal cord caught my attention, as it is rather rare, and my son was born with the same condition. He had a sacral dimple at birth that was watched from that time and imaged at 3 months (by which time he'd developed a significant hemangioma surrounding the sacral dimple) and confirmed as a tethered spinal cord. He had surgery shortly thereafter.

If you are comfortable sharing, how was yours discovered?

@pammiesue51

I'm new to Mayo Connect, I can only offer Empathy to @darj. then state my situation as well. @darj's description of feet like dried glue and tightness in legs, is similar to what I've been experiencing,, and am seeking answers. My contributing history is nerve damage with weakness in my left leg & drop foot from a tethered spinal cord. Also have unexplained neuropathy in my feet for 4-5 years (non-diabetic),no pain, thank God. 15 months ago, I had a TKR, both knees. Had all the usual discomforts of recovery, and all were resolved: Except, horrible vice-like tightening and wierd sensations,around my knees, and now, down the front of my legs. Makes walking quite difficult, and it throw's off my balance. Many falls, including a fall in August,with a fractured humerus. My Ortho Dr.has.said this would go away. hmmm… I've had increasing doses of Lyrica, which sometimes takes the edge off, but not enough. Anyone have a clue why this is happening, or treatment? Thanks

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Thank you so much! I will read this tonight. Just returned from Mayo in Rochester, and now have some time. I'll give feedback.

Thanks Lisa, for the welcome, and, hoping that your son's tether release was a success, and that he is doing well!
As I describe my experience, I want you to keep in mind that his experience is, and will be completely different than mine. Early diagnosis, treatment and ongoing observation from skilled clinicians means everything..It was quite different 67 years ago, and I knew Nothing about my diagnosis until I was 27 yrs old. Most doctors then had never heard of tethered cord.

The doctor that did my delivery noticed a closed "fat pad" over the base of my spine, and commented to my mother,"I just don't know about this.", but let it go. I grew up with no feeling on the outside of my left leg & thought everyone was like that. Everything else was typical kid stuff. I was walking at my 6 month pediatric visit. I took tumbling, tap, on pointe, played sports, etc. I remember having temporary weakness below the waist if I hyper extended my back or legs, but I never mentioned it
At 22, I became an RN, married at 23 & had my first child at 27, By then, I knew the leg numbness wasn't normal, but I was too busy to figure out why. I finally saw a specialist who had me waste a year doing low back exercises.
One day, I tried to toe up with my left foot, and couldn't. I also noticed my leg was cold, and felt a bit smaller. I kind of panicked, and so did my doctor. My entire leg was 2" in diameter smaller than my other leg. He ordered a myelogram which clearly showed the tethered cord, benign tumors and spina bifida occulta. I was then referred to one of 3 neurosurgeons in the country that had experience with this. My neurosurgeon actually practiced at the hospital where I had trained, He did the most complex head and spinal surgeries there. He was rumored to be on call for President Kennedy when he visited the midwest.
We (students) were all intimidated, and afraid to make rounds with him! I became his patient, and I was still afraid of him!
He did my surgery when I was 28. I was the first adult he'd ever done. He excised the tumors and released the cord. I think he saved my future as a wife, mother, and as a nurse. I had another child at age 30, and worked another 35 years.
I recently had an MRI at Northwestern Hospital in Chicago, and found that my original surgery remains stable! As a senior citizen, I do have some problems associated with my cord, but these are also things that could happen to anyone as they age. We're retired, and both love to travel, do estate sales, and enjoy grandkids. I know this is more than you asked for, but I wanted you to know that I led a normal life.

@jigglejaws94

Wow — sounds like you are going through a lot. How discouraging to have been to so many docs too — and still no answers. I have idiopathic peripheral neuropathy which causes the bottom of my feet to sometimes feel stiff or like cardboard.

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I was taking Gabapentene and now taking only 75 mg Pregablin.Yoga , Meditation , Massage has helped me to overcome terrific nerve pains .Now I Sometimes take 75 mg Tramadol and Pray .It helps.

Liked by pammiesue51

@pammiesue51

I'm new to Mayo Connect, I can only offer Empathy to @darj. then state my situation as well. @darj's description of feet like dried glue and tightness in legs, is similar to what I've been experiencing,, and am seeking answers. My contributing history is nerve damage with weakness in my left leg & drop foot from a tethered spinal cord. Also have unexplained neuropathy in my feet for 4-5 years (non-diabetic),no pain, thank God. 15 months ago, I had a TKR, both knees. Had all the usual discomforts of recovery, and all were resolved: Except, horrible vice-like tightening and wierd sensations,around my knees, and now, down the front of my legs. Makes walking quite difficult, and it throw's off my balance. Many falls, including a fall in August,with a fractured humerus. My Ortho Dr.has.said this would go away. hmmm… I've had increasing doses of Lyrica, which sometimes takes the edge off, but not enough. Anyone have a clue why this is happening, or treatment? Thanks

Jump to this post

Thanks for sharing the article on adult diagnosed tethered cord from PubMed, a great resource for reliable medical information!
There are far more articles for very young patients, so this is good for answering questions about newly diagnosed adults.The references to neuropathy and plantar fascitis were "guesses" of the diagnosis, before an MRI was completed. An MRI identified the tethered cord.

@pammiesue51

Thanks Lisa, for the welcome, and, hoping that your son's tether release was a success, and that he is doing well!
As I describe my experience, I want you to keep in mind that his experience is, and will be completely different than mine. Early diagnosis, treatment and ongoing observation from skilled clinicians means everything..It was quite different 67 years ago, and I knew Nothing about my diagnosis until I was 27 yrs old. Most doctors then had never heard of tethered cord.

The doctor that did my delivery noticed a closed "fat pad" over the base of my spine, and commented to my mother,"I just don't know about this.", but let it go. I grew up with no feeling on the outside of my left leg & thought everyone was like that. Everything else was typical kid stuff. I was walking at my 6 month pediatric visit. I took tumbling, tap, on pointe, played sports, etc. I remember having temporary weakness below the waist if I hyper extended my back or legs, but I never mentioned it
At 22, I became an RN, married at 23 & had my first child at 27, By then, I knew the leg numbness wasn't normal, but I was too busy to figure out why. I finally saw a specialist who had me waste a year doing low back exercises.
One day, I tried to toe up with my left foot, and couldn't. I also noticed my leg was cold, and felt a bit smaller. I kind of panicked, and so did my doctor. My entire leg was 2" in diameter smaller than my other leg. He ordered a myelogram which clearly showed the tethered cord, benign tumors and spina bifida occulta. I was then referred to one of 3 neurosurgeons in the country that had experience with this. My neurosurgeon actually practiced at the hospital where I had trained, He did the most complex head and spinal surgeries there. He was rumored to be on call for President Kennedy when he visited the midwest.
We (students) were all intimidated, and afraid to make rounds with him! I became his patient, and I was still afraid of him!
He did my surgery when I was 28. I was the first adult he'd ever done. He excised the tumors and released the cord. I think he saved my future as a wife, mother, and as a nurse. I had another child at age 30, and worked another 35 years.
I recently had an MRI at Northwestern Hospital in Chicago, and found that my original surgery remains stable! As a senior citizen, I do have some problems associated with my cord, but these are also things that could happen to anyone as they age. We're retired, and both love to travel, do estate sales, and enjoy grandkids. I know this is more than you asked for, but I wanted you to know that I led a normal life.

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Hi, @pammiesue51 — thanks for the good wishes for my son, who had tethered spinal cord surgery at 3 months. Yes, thankfully, his surgery was a complete success, and he is doing just fine now. He has what we call an "upside down happy face" scar around his tailbone — pretty significant one — but we figure only maybe teammates in a locker room, a cabin mate at camp, or a future wife will probably ever see it. The surgeon decided to remove the hemangioma along with untethering the cord, thus the larger scar. I was happy to see that go, as it was very unattractive and angry-looking.

In the short term, his recovery was slow in some ways, as he had delays in sitting up, walking, self-feeding and communication. We were one of those families that count every word uttered to ensure he had at least 50 words by age 2. The school district tested him, developed an IEP, and did a lot of OT, PT and speech with him. They felt his body had to put so much energy into his recovery that some of the other areas fell behind. They did a great job over a couple of years, and he did catch up.

I would say that even for us, in 2006, our son was considered a rarity of interest to medical students and trainees, and just about every doctor he's ever seen has been fascinated by his case. I can hardly imagine having this condition in a time where doctors were unfamiliar with it, and I'm sorry that you were not diagnosed till age 27 — though so glad they found it for you. That is quite a long time to go with a condition that is undiscovered, but I can completely imagine it 67 years ago. Sounds like you were way beyond our son in your development as a small child. Walking at 6 months is quite amazing. So glad to hear you were able to do all those sports.

It sure seems like you had an excellent neurosurgeon when your condition was diagnosed. That is a wonderful thing. My son's neurosurgeon, too, was rather intimidating, but he had a very sweet, soft-touch nurse who went around with him and stayed behind at each visit to kind of hold your hand, explain anything you didn't understand, and the like. Do you remember if your surgeon had someone like that on his team? Perhaps you knew the others on his team, if you worked there and rounded with him. The key thing, though, in my opinion, is the surgical skill. That is so wonderful you feel your surgery saved your future as a wife, mother and as a nurse, and that you went on to have another child and work 35 more years. What a blessing.

So happy to hear that your original surgery remains stable.That's great news. I am sorry to hear that you do still have some problems associated with your cord. Very glad to hear, though, that you've had a normal life and are able to enjoy your grandkids, travel and have a great retirement.

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