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Hand deformation advice neded

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Old 07-29-2005, 09:19 PM   #1
Join Date: Jul 2005
Posts: 1
twinniesplus1 HB User
Hand deformation advice neded

I've had SLE for 16 years and my hands have slowly deformed to now where I cannot open my right hand very well. Am procrastinating going to a surgeon b/c of my 3 littles ones. I can do things my way now but I'm worried about the recovery period. Any insight or advice. BTW my left hand is currently better but noticably getting worse.

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Old 08-02-2005, 08:38 AM   #2
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Join Date: Nov 2004
Location: UK
Posts: 1,558
goldenwings HB User
Re: Hand deformation advice neded

Hello twinnies,

I am a patient with SLE which I have had for 30+ years. I also have numerous other medical conditions, some attributed to lupus others not. I think it is always most advisable to make sure whether what is going wrong with you is as a result of lupus or not. We all know that the doctors do tend to put everything down to our primary condition, when in fact a lot of times it is not as a result of lupus. I really do speak from experience on this.

I am not speaking in a medical way here, only as a lupus patient. Is your hand twisted in a rigid way or is it because of the tendons and muscles twisting? I ask this because maybe if it is rigid, it could be an arthritis type of stiffness causing it. Splint type help might go a long way to straightening it out. If it is muscle and tendon, then I would personally go to see about surgery.The main decider for you I think will be to get a definite diagnosis and then go from there.

I have a nerve and muscle wasting disease and my left arm just flopped, and my hand twisted under so it was in a sidewards clenched position. I went to see a surgeon, and after a year discussing it, because I had to assure him that I knew it wasn't going to cure my N and M illness, I decided to go ahead with surgery. My left arm needed bone grafts, and work further down my arm stiffened the whole of the arm and wrist and this in turn lifted my hand somewhat. I can move my fingers even though I can't pick up larger items, but I can now use my fingers more than I did.

My right arm is getting weaker and eventually I will have my right hand and arm operated on. Because this is caused by my N and M wasting illness, the outlook for me personally is not good. I will not regain use of my limbs, and also the surgery will not cure me. I took this option because it gave me use in my arms and hands for a bit longer. I personally would have any type of surgery if it was going to enable me to have function for a few more years. This is my personal story though and I would not wish you to read this as what is wrong with you. I am only letting you know how I am affected by it and what steps I took to "remedy" the situation the best way for me.

I would advise you to think about what I have suggested. Go to your doctor, get a "proper" diagnosis, find out exactly what is going on. Push and push, because it is your body. If you are not satisfied and you feel unhappy with the first doctgor, go for a second opinion. If surgery is the best option, go for it I would say. I know you have your three angels to care for, but in the long run you will be more able to do things with them than letting this go on as it is. It might even only require a small operation. Please think about it.

Best wishes

I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

Last edited by goldenwings; 08-02-2005 at 08:55 AM.

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