YANMD. What are some possible reasons my heels can't touch the ground?
April 22, 2013 4:14 PM Subscribe
Beginning in September last year, my ankles/lower legs tightened so much I'm now on tiptoes and my heels don't touch the ground. I've seen Seattle's brightest orthopedists, neurologists and podiatrists and they don't know why. We've tried a bunch of stuff and I'm now in a wheelchair. Is there anything else I should look into? Blizzard inside.
I have a genetic disease, Ehlers Danlos Syndrome, that usually makes all my tendons and everything else about my joints very loose. In September last year, I went into my sports medicine doctor (he'd treated me for breaking a foot in May, but that had been totally healed for awhile) with swelling on both feet and extreme tightness on the back of both. He diagnosed it as an Aquinas on my achilles tendon and had me do stretches; also put me in orthotics. My orthopedist primary care doc concurred and also put me on anti-inflammatories. Because of the swelling, they both thought it could also be a flare of the autoimmune disease I have. The swelling went down, but the tightness kept escalating. I was referred for surgery and got an MRI. The surgeon (top lower limb surgeon on the west coast) said that the MRI was normal and that, by physical exam, this seemed like dystonia, to be handled by a neurologist. The surgeon ordered a bone scan just to make sure. The surgeon also put me in a wheelchair, because putting weight on feet that were totally fixed in one place meant that I wouldn't be able to use them once we figured out what was going on.
The neurologist I was treated by, a movement disorders specialist, said that my feet, ankles and calves really seemed like they were dystonia from physical exam and from my gait. However, the EMG (?) did not reflect that. She decided to treat me anyway, because many movement disorders (especially getting one as an adult) present weirdly. We tried Leva-dopa (nothing), then botox in my gastrocs and soleus (nothing), then a high dose of baclofen (nothing). My physical therapist at the time (a manual therapist) felt she was hurting me by trying to manipulate my feet because they were so fixed.
The bone scan from the surgeon came back that I had pretty serious inflammation from my hips to my toes, but no one spot that would explain the sudden stuff in my feet. My autoimmune disorder (Sjögren's) doesn't usually cause disability like this. I have seen another orthopedic surgeon who believes that doing surgery to lengthen my gastrocs is the answer. The weird thing about my ankles is the if I bend my knees, I have normal motion in my ankles again. It's only when my legs are straight that I can't bring them up. However, my new surgeon believes that there is an underlying neurological or autoimmune reason why this came on so suddenly that isn't being addressed - and that a really invasive surgery risks being a temporary band aid. He strongly thinks it's neurological. My doctors have no idea. We did substantial blood work to try to see if I have any new autoimmune diagnoses these past month. The neurologist says that if it were neurological leva-dopa or botox would have helped.
Is there something they are missing? You're not my doctor, of course -- perhaps not even a doctor. Getting motion back when I bend my knee is weird. The swelling for the first months I had this was weird (it only went down when I started wearing running tights - but then went down entirely after two weeks). I feel like there must be an answer. I don't want to just give up mobility forever because people are scratching their heads. Recommendations for practitioners inside and outside Seattle are great. (Yeah, I'm getting massage and acupuncture.)
I have a genetic disease, Ehlers Danlos Syndrome, that usually makes all my tendons and everything else about my joints very loose. In September last year, I went into my sports medicine doctor (he'd treated me for breaking a foot in May, but that had been totally healed for awhile) with swelling on both feet and extreme tightness on the back of both. He diagnosed it as an Aquinas on my achilles tendon and had me do stretches; also put me in orthotics. My orthopedist primary care doc concurred and also put me on anti-inflammatories. Because of the swelling, they both thought it could also be a flare of the autoimmune disease I have. The swelling went down, but the tightness kept escalating. I was referred for surgery and got an MRI. The surgeon (top lower limb surgeon on the west coast) said that the MRI was normal and that, by physical exam, this seemed like dystonia, to be handled by a neurologist. The surgeon ordered a bone scan just to make sure. The surgeon also put me in a wheelchair, because putting weight on feet that were totally fixed in one place meant that I wouldn't be able to use them once we figured out what was going on.
The neurologist I was treated by, a movement disorders specialist, said that my feet, ankles and calves really seemed like they were dystonia from physical exam and from my gait. However, the EMG (?) did not reflect that. She decided to treat me anyway, because many movement disorders (especially getting one as an adult) present weirdly. We tried Leva-dopa (nothing), then botox in my gastrocs and soleus (nothing), then a high dose of baclofen (nothing). My physical therapist at the time (a manual therapist) felt she was hurting me by trying to manipulate my feet because they were so fixed.
The bone scan from the surgeon came back that I had pretty serious inflammation from my hips to my toes, but no one spot that would explain the sudden stuff in my feet. My autoimmune disorder (Sjögren's) doesn't usually cause disability like this. I have seen another orthopedic surgeon who believes that doing surgery to lengthen my gastrocs is the answer. The weird thing about my ankles is the if I bend my knees, I have normal motion in my ankles again. It's only when my legs are straight that I can't bring them up. However, my new surgeon believes that there is an underlying neurological or autoimmune reason why this came on so suddenly that isn't being addressed - and that a really invasive surgery risks being a temporary band aid. He strongly thinks it's neurological. My doctors have no idea. We did substantial blood work to try to see if I have any new autoimmune diagnoses these past month. The neurologist says that if it were neurological leva-dopa or botox would have helped.
Is there something they are missing? You're not my doctor, of course -- perhaps not even a doctor. Getting motion back when I bend my knee is weird. The swelling for the first months I had this was weird (it only went down when I started wearing running tights - but then went down entirely after two weeks). I feel like there must be an answer. I don't want to just give up mobility forever because people are scratching their heads. Recommendations for practitioners inside and outside Seattle are great. (Yeah, I'm getting massage and acupuncture.)
I'm sorry to hear about this situation, and I have no idea what's causing it. But I do have a question: have you tried walking in high-heel shoes? I'm not joking... If your feet are frozen in that position, so you're forced to walk on your tip-toes all the time, it makes me wonder if you could get around better if you were wearing high heels to support your weight. It's no solution, but I thought it was worth mentioning in case you haven't tried it.
posted by Ursula Hitler at 4:39 PM on April 22, 2013
posted by Ursula Hitler at 4:39 PM on April 22, 2013
Response by poster: Yes. I wear high heeled clog boots around the house. It's what allows me the little mobility I have. Thanks! /unthreadsitting.
posted by sweltering at 4:50 PM on April 22, 2013
posted by sweltering at 4:50 PM on April 22, 2013
IANAD. If you regain function upon bending your knees, it does sound like some kind of nerve/muscle interface issue - I don't know why trying two drugs should eliminate this entirely from consideration. If it were me, I'd definitely get a second opinion from another neurologist.
posted by VikingSword at 5:01 PM on April 22, 2013
posted by VikingSword at 5:01 PM on April 22, 2013
Best answer: I nth the recommendation for another non-surgical opinion. I specifically recommend you go to the Mayo Clinic in Minnesota. This sort of thing (unsolved diagnoses) is their specialty, and they do an excellent job.
posted by treehorn+bunny at 5:09 PM on April 22, 2013 [4 favorites]
posted by treehorn+bunny at 5:09 PM on April 22, 2013 [4 favorites]
Best answer: It sounds to me as if you are one of those people with Sjogren's in whom the disorder is secondary to systemic scleroderma ("About twenty percent of patients with systemic scleroderma also have Secondary Sjögren's Syndrome").
In scleroderma, cells of the immune system can cause inflammation and then lay down thick deposits of collagen in various parts of the body, and it seems like that may be what's happening as you experience "pretty serious inflammation from [your] hips to [your] toes."
I'd think collagen laid down by your immune cells would have the same defects as collagen laid down in the course of your development, but perhaps the genes are different, or perhaps the oxidative cross-linking characteristic of inflammation compensates (or overcompensates!) for the stretchiness conferred by Ehlers Danlos.
It beggars coincidence to think that you've developed an autoimmune problem which could partially compensate for your Ehlers Danlos purely by chance, but I could only find a single page which talked about the two conditions in the same breath.
posted by jamjam at 6:04 PM on April 22, 2013 [1 favorite]
In scleroderma, cells of the immune system can cause inflammation and then lay down thick deposits of collagen in various parts of the body, and it seems like that may be what's happening as you experience "pretty serious inflammation from [your] hips to [your] toes."
I'd think collagen laid down by your immune cells would have the same defects as collagen laid down in the course of your development, but perhaps the genes are different, or perhaps the oxidative cross-linking characteristic of inflammation compensates (or overcompensates!) for the stretchiness conferred by Ehlers Danlos.
It beggars coincidence to think that you've developed an autoimmune problem which could partially compensate for your Ehlers Danlos purely by chance, but I could only find a single page which talked about the two conditions in the same breath.
posted by jamjam at 6:04 PM on April 22, 2013 [1 favorite]
I am not a doctor and I'm afraid I don't have insight into your larger condition, but I'll point out that it doesn't seem strange to me that you would regain some range of motion at the ankle when your knee is bent; the gastrocnemius originates on the femur and inserts on the ankle, so it's lengthened when the knee is extended and shortened when the knee is bent. If your gastroc is being inhibited from reaching its full length, extending the knee would result in plantar flexion at the ankle due to the contracted calf muscle; flexing the knee would relieve the tension on the calf and thereby free up the ankle.
The same idea can be seen when a person tries to bend over at the hip without bending at the knees; they will eventually be limited by the range of motion of their hamstrings. They can then introduce some knee bend, which removes some tension from the hamstrings and will allow for further hip flexion. There's an illustration here.
posted by ludwig_van at 6:15 PM on April 22, 2013 [1 favorite]
The same idea can be seen when a person tries to bend over at the hip without bending at the knees; they will eventually be limited by the range of motion of their hamstrings. They can then introduce some knee bend, which removes some tension from the hamstrings and will allow for further hip flexion. There's an illustration here.
posted by ludwig_van at 6:15 PM on April 22, 2013 [1 favorite]
Response by poster: The scleroderma suggestion... wow. I had thought this was unrelated and just due to so many blood draws and IV's for diagnostic procedures, but I had to have a chest portacath placed this past fall, too, because nobody could get vein access any more. Phlebotomists would say that my veins seemed like they were hardened on the outside. They tried to put a picc line in and that was even impossible! I really need to find a new rheumatologist. Zounds.
posted by sweltering at 6:21 PM on April 22, 2013 [1 favorite]
posted by sweltering at 6:21 PM on April 22, 2013 [1 favorite]
Response by poster: Update: I paraphrased some of this thread and shared it with my orthopedic surgeon. He remembered a rheumatologist who specializes in connective tissue disorders and has interest in both Ehlers Danlos and sclerodema. I have an appointment next week. Thanks, mefi!
posted by sweltering at 7:54 AM on April 27, 2013
posted by sweltering at 7:54 AM on April 27, 2013
Hi, this probably doesn't have anything to do with what you're going through, and I'm definitely not a doctor...
but your symptoms seem to mirror something I went through a few years ago. I only came close to losing my ability to walk, but yes: had to switch to heels at first, then to waddling while wearing heels, hamstrings feeling tight like you wouldn't believe, only to have the range of motion in my ankles restored by bending the knees. Medical staff baffled, etc...
It got better gradually, concurrently with discontinuing a post-operative medication regime, especially Cipro. While Cipro is supposed to be vaguely linked with "tendon rupture", in my case it coincided with exactly the symptom you've described... but since I had many other things going on at the time, I can't be sure. If you'd like details, I'd be glad to supply them and reconstruct the exact set of circumstances... this was five years ago, so I might need to dig a little. Feel free to memail me.
posted by tigrrrlily at 12:30 AM on April 30, 2013 [1 favorite]
but your symptoms seem to mirror something I went through a few years ago. I only came close to losing my ability to walk, but yes: had to switch to heels at first, then to waddling while wearing heels, hamstrings feeling tight like you wouldn't believe, only to have the range of motion in my ankles restored by bending the knees. Medical staff baffled, etc...
It got better gradually, concurrently with discontinuing a post-operative medication regime, especially Cipro. While Cipro is supposed to be vaguely linked with "tendon rupture", in my case it coincided with exactly the symptom you've described... but since I had many other things going on at the time, I can't be sure. If you'd like details, I'd be glad to supply them and reconstruct the exact set of circumstances... this was five years ago, so I might need to dig a little. Feel free to memail me.
posted by tigrrrlily at 12:30 AM on April 30, 2013 [1 favorite]
Response by poster: Thanks for all the input, hive mind! I did get another opinion, from a rheumatologist. He ran more tests (for inflammation and autoimmune markers) and the problem seems to be the onset of autoimmune inflammatory arthritis. My feet and hands have been the first things to get stiff.
I've started on medication that is already making a difference. It's a relief!
posted by sweltering at 9:40 AM on May 24, 2013 [1 favorite]
I've started on medication that is already making a difference. It's a relief!
posted by sweltering at 9:40 AM on May 24, 2013 [1 favorite]
This thread is closed to new comments.
posted by ladypants at 4:27 PM on April 22, 2013