It was during that first attempt at standing that I felt a band of numbness alongside the exterior of my right thigh. A week later I felt numbness spread to some of my fingers, first in one hand, and then the other, and to my left foot in between.

Now, almost a year later, the numbness remains and after getting better has worsened. I often wake with one or both of my hands partially numb. While my hands "wake-up" after a while some numbness remains. Last week I was washing dishes and dropped a plate (on my foot, ouch!) because of momentary weakness in several of my fingers.

As I type right now, I feel like the middle finger of both hands is quite numb and I have some weakness in other fingers as well.

These aren't symptoms I've read of on the board or heard much about. I'd appreciate any wisdom from those whose healing process is ahead of my own, who may have gone through this in their healing process.

I have a patch of numbness on the outer muscle band of the left thigh running from my knee to my hip. My neurologist has identified it as meralgia paraesthetica, probably a result of nerve damage caused when I was proned on ECMO for over two weeks. I've been aware of it since I woke from a four week coma in January and six months later, I really can't say whether it has got better or worse.

I also have problems with most of my joints, especially the hands and feet, though I wouldn't describe it as numbness. It is a problem that has appeared in the last few months since I was discharged from hospital. It is more of an ache and stiffness in my fingers which affects my grip and my ability to make a fist, etc and I have broken quite a few plates and dishes while washing up too!
It is more obvious and painful first thing in the morning and as the evening progresses. I'm currently going through blood tests, x-rays, consultations, etc to identify the problem.

Regards

Recently, I've noticed that my hands are numb when I wake in the morning and "wake-up" as I move into my day. As I type now I feel numbness in my left thumb and ring finger.

I'm waiting for an appointment to see a neurologist and I'm hoping the information you shared will be helpful.

If you are open to sharing the information -- I'd really like to share your doctor's contact information with my doc. It's been hard for me to find anyone who truly understands the complications that can accompany ARDS. You are welcome to contact me directly at rudijh at yahoo . com

Best wishes on your recovery process!

Rudi

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Originally posted by smoul:
I have the pain as you describe. After my first episode of ARDS, 10 months later I had to have a hip replacement due to necrosis of the bone. After the second ARDS I had a knee replacement. It took MRI's to make diagnosis. At first the docs just kept giving me more pain medication saying it was diabetic neuropathy. (After my first ARDS I became diabetic.) I still have the neuropathy. Just curious if you are diabetic now? Make sure the doc has ruled out everything else!

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I’m in the UK but can send my hospital and neurologist’s name to your email address if it can be of help to you.

To give you some idea, I was subjected to a couple of tests which identified the Meralgia Paraesthetica, neither of which I found very pleasant. The first one involved a number of electrode type patches being stuck on various parts of my numb leg and also my good leg. When an electric impulse was passed through, if I jumped off the chair that meant the nerves were good. If I felt nothing, ie the numb part, that identified the damaged nerves.

The next test involved a number of long thin needles being stuck into various parts of the leg muscles which recorded (audible) electrical activity. Again, not noticeable when stuck in the numb part but not nice when you can feel it ..... but I am a wimp when it comes to needles.

Good luck at your neurology appointment, I’ll be interested to hear how you get on.

quote:

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Originally posted by Rudi:
Thank you both for your replies. David, your situation sounds so close to my own. My patch of numbness is very similar and is on my right thigh. I feel the ache in my joints as well, in addition to the numbness I feel. My coma was three weeks long.

Recently, I've noticed that my hands are numb when I wake in the morning and "wake-up" as I move into my day. As I type now I feel numbness in my left thumb and ring finger.

I'm waiting for an appointment to see a neurologist and I'm hoping the information you shared will be helpful.

If you are open to sharing the information -- I'd really like to share your doctor's contact information with my doc. It's been hard for me to find anyone who truly understands the complications that can accompany ARDS. You are welcome to contact me directly at rudijh at yahoo . com

Best wishes on your recovery process!

Rudi (in Berkeley, CA)

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Also - today I was diagnosed with a growth on my pituitary gland (read tumor) waiting for my referee to an endocrinalogist. Please keep me in our prayers.

Sorry to hear your other news, my thoughts and best wishes will be with you.

It doesn't seem like there is any treatment for them to offer for my numbness in my leg. Most of my appt was focused on my hands. The conclusion is that I have carpal tunnel syndrome in both hands with my doctor suggesting surgery in my left hand as it is experiencing more severe symptoms. I need to do some research on alternatives before getting back "under the knife."

Got a call from endocrinology on Friday but kept playing phone tag. Seems like I'll get an appt fairly soon. The good news is that my tumor is still quite small.

I was told the same about my numb leg, no treatment, it will either get better or it won't!

I'm still being investigated for my hands and joints but the thought of surgery is not something that would appeal to me either.

You and I both have the above problems soon after our encounter with ARDS. I would guess that it's not coincidence. The tumor may be a different matter though.

I also had every joint in my body that would hurt, especially the hips, shoulders, and knees. That has since subsided to be livable with the exception of my knees, I cannot seem to gain strength back in them and the stairs just about kill me.

I hope someday someone figures out what caused it.

Lori

Since my last post I found out that my tumor is more clearly a growth than a tumor. It's not clear whether it's something that's recent or has been in my body for a long time. For now they're just going to monitor it and see if it changes over the next few months.

In addition to the carpal tunnel syndrome is diagnosed with a few weeks ago I've now also been diagnosed as having sleep apnea. It's not clear to me whether this is something I've have for a long time or only since having acute respiratory distress syndrome. At the very least it seems likely that my illness has aggravated the condition made a more serious. I'll soon be sleeping with a CPAP machine to see if it's helpful. I certainly can't believe that not breathing well enough while sleeping or getting enough sleep is helping my body heal so I hope this will be part of the solution.

As David R. said it seems like more than coincidence that we both had similar kind of numbness after our experience with this disease it's hard for me to believe that all I have is carpal tunnel syndrome.

If any of you have a suggestion as how I could find a specialist would give me an alternative diagnosis particularly in the San Francisco bay area I would very much appreciate your recommendation.

In the meantime, I believe I'll be trying a CPAP machine to help with the sleep apnea next week. I'll let you all know how that goes.

-Rudi

[ August 10, 2010: Message edited by: Rudi ]

I've been using my CPAP for a couple of week now. Some nights it's pretty effortless, others I get claustrophobic with the mask and freak out a bit. Sleeping with it and without the benefit of sleeping meds isn't an option at this point. I think it's partly because of my ICU trauma.

I'll be getting my hormones tested again this week and then will see if it's helping in that regard. I do think my sleep quality has improved with it.

Thank you for your suggestions regarding CPAP. I've gotten used to my mask but it is far from ideal. I'll try something else next time I'm at the sleep clinic.

At least I've acclimated enough that I'm not waking up disoriented and thinking I'm still in the hospital with oxygen on my face -- that happened the first week!