Loss of mobility in both legs

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Good morning all,

I was just released from the hospital last night diagnosed with Autonomic Neuropathy. I lose all sensation and my mobility in both legs while sitting laying or even standing. The neurological Doctor seems stumped as well as the many other ER Doctors who saw me over the past 3 days. I had a ton of tests including X-ray, catscans, ultrasounds and MRI's. No answers yet as they are conferring amongst one another. I now have to use a walker to make the journey to the toilet. I can still walk in a limited unbalanced fashion. In order to walk I have to remind myself where my legs are by (while laying) pulling them physically to the edge of bed and let them hang over. This causes them to wake up enough to stand with help and walking becomes a challenge even with my walker. Then I also require help bringing them back up when I lay down. Once laying I lose all sensation again and also the ability to even wiggle my toes. Has anyone ever gone through something similar?

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  • Posted

    What a horrible thing you are going thru. I am so sorry. No, I have never gone through something similar. My husband experienced terrible health problems for two years, he went to numerous doctors, had so many tests ran but nothing ever was decided. His MAIN problem was:  Low immune system which caused many illnesses and resulted in two hospital stays of one week each time. We had almost given up ..  He is 75 years old,  up until the time he got sick he had been a golfer, so active in yard work, gardening, etc. The illness knocked him flat of his back. NOW.. the good news. A chiropractor referred us to a HOMEOPATH...  We had never really heard of one (google it, we did). We made an appointment with one (you can find one in your area.. this one is near Atlanta, Ga).. Thirty minutes after we got there (we were told to allow three hours for the visit,  everything is  done by  connecting his hands to a computer,  electrical impulses (which he did not feel any  discomfort or even a tingle or anything)... After 30 minutes she said "I see you have MOLD in your system"....A little later she said "I see a LOT of MOLD... have you been exposed to MOLD?"   Well, actually, he had been exposed to mold. He has a large workshop that had begun to leak three years ago.....black mold formed inside it,  he was in the workshop often. He had been breathing mold and his skin had been absorbing mold which caused all of his illnesses. She "prescribed" a special formula which is actually in water..   the formula is delivered to our home in large gallon jugs, has been especially mixed just to treat his illness. It took at least 60 days before we began to see an improvement......we were about to just stop seeing her and not buy anymore of the formula. BUT gradually he began to improve, got his energy back, began to feel like playing golf again. He started the treatment in Feb. 2016 and is still seeing her once a month and still drinking the special supplement. NOW.. I said all that to say this: A Homeapath saved my husband's life. (I think they are also called nutriopath) He is off ALL the meds that the medical docs had prescribed for him and is so much healthier than he was even before he began to get sick two years ago.

     

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  • Posted

    Hi there I am also having the same trouble walking, I now use two sticks. I started off with restless leg syndrome, which was a nightmare in itself, then I started having balance problems and my legs suddenly decided they were going to do their own thing regardless of what my brain told them. Now I cannot walk properly at all and I have to get into a bath every morning and warm them up before I can stand up which means my husband cannot leave the house for work until I am done. I have had Type 1 diabetes mellitus for 43 years and my consultant has diagnosed autonomic neuropathy as the reason behind this problem. I don't think there is a treatment to reverse the situation yet but I carry on as best as I can as you do no doubt. It is good to know that I am not the only one suffering in this way, it makes me feel uncomfortable and a burden sometimes but I keep a smile on my face and tell people I'm not handicapped I'm unique.

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    • Posted

      Karen, have you ever had a NARSAR test done? I see a doctor for Dysautonomia and his colleague is brilliant, he wrote the physicians manual on these disorders, Joseph Capolla (SP?) if you google the name I'm sure you would find him. It took ten years of seeing many different specialists to finally get diagnosed correctly. If I remember correctly, memory is another area that I have a lot of problems with, RLS...EXTREME RLS is how everything started. It is an awful condition to suffer with night after night.

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  • Posted

    Hi, I've experienced something very similar to a less degree. It is intermittent for me, and I lose sensation going down the middle of the legs. I had a lot of testing done as well including electrical studies of the spine that showed some slowed signal, but the slowed/lost signal didn't correlate with my symptoms. My doctor believed it was a mistake in the test.

    For me, I have a lot of hypermobility in my body, so my muscles are unusually tight. They don't really release. My personal theory that I've shared with a neurologist who somewhat agreed was that my pyriformis muscle is tightening so severely it completely presses on some important nerves that exit around the hip and buttocks area from the spine. There's another muscle involved I cannot remember the name of. This would not show up on tests, but if your muscles are the problem, a very good and curious sports medicine md may be blue to help, or at least rule it out.

    I do lose complete feeling during, and it happens specifically after more activity for me, and then getting up from sitting. Or, sitting from standing. Very specific like what your describing.

    From my own troubles trying to find answers, I know another cause is a vertebrae disc slipping positionally. 

    You should discuss with your doctor having an EMG while symptoms are occurring in my opinion.

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  • Posted

    Oh, in case what I wrote in any way is helpful, I have a condition called Ehlers Danlos Syndrome. It was diagnosed clinically, so it's difficult to know if it's the exact connective tissue disease I have (I'm also being tested for other forms). To sum it up, these are conditions caused by the body making too little collagen or none of a specific type of collagen in the body. If you've heard of Marfans in athletes, especially basketball players, it is one of the connective tissue diseases. It's a long shot, but weak collagen in my body causes the very loose joints. Which for me is the cause of the spasmed muscles. But, regardless, I would ask your docs if they can investigate a muscular problem.

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    • Posted

      Hi Stephanie, I have a very good friend that has EDS. Do you have Dysautonomia as well? It seems like they go hand in hand. Just curious. I belong to an online support group with people that struggle with Dysautonomia, EDS and POTS. I have learned a lot from the group, if you're not already you may want to consider joining a group. Everyone in our group is so supportive of each other. People will go out of their way to help you, whether it be a place to stay in order to see a doctor in our area to needing a ride to the doctor or even just someone to sit at the doctor with them for support. Wonderful people! Good luck to you!

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  • Posted

    I have a friend in the hospital right now that started going through this very similar experience about 2 wks ago. She is in rehab and they are trying to teach her how to walk. She has no idea what happened. One evening she went to bed fine and tried to get up in the morning and fell on her face. She has no leg use and at that time no feeling below the waist. Now she is experiencing pain.
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  • Posted

    Hi timjr,

    I'm sorry to hear what you're going through, how scary! I was diagnosed with Dysautonomia (disorder of autonomic nervous system) about six months ago. Not everyone has the same issues that they're dealing with! I have seen so many different specialists over the years, yet it wasn't until not too long ago I was given an accurate diagnosis which explains why I have all the different problems I've been having, ex. Restless Leg Syndrome, Raynauds, Anxiety, vision problems, memory problems, Fibtomyalgis, Chronic Fatigue and the list goes on. I'm fortunate to live near the doctor that wrote the physicians manual on Dysautonomia, so many doctors aren't aware with this disorder. I started having problems when. I was around 40, they just started out of nowhere. If there is anything I can do to help please let me know, I would be happy to talk! I wish you all the best! Just curious, which state do you live in?

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