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Old 11-21-2010, 10:32 AM   #1
pd5 pd5 is offline
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very scared, losing vision and use of hands - Please help!

I tried to explain this better than before, but I am very scared and really don't know what to do. Please if you would, give me your opinion.

Several years ago, I went to many doctors because of weakness, fatigue, and pain they could not find a cause for, but told me was "nerve" pain. I could barely walk and needed a cane. I ran out of money and gave up looking for a correct diagnosis, and went to PM dr. for management instead. I was doing fine on kadian and zonisamide and Lidoderm patches for several years. The pain lessened to managable, my legs were working better, and I was left with fatigue, weakness in my arms and random pitting edema.

Now I am terrified, because my hands are so weak. they do not feel or work right, I often cannot open them properly or turn my hand palm up if I am holding something. Many times I cannot lift my wrist. I keep dropping things, typing badly, and I often need to move very slow just to complete simple tasks like serving a spoonful of pasta from a pot to a plate. life has become very difficult.

Even more scary is my eyes. I cannot focus very well. things still have sharp edges (sort of), but i struggle to see them. sometimes things are double, especially when reading or driving. Covering one eye makes double vision go away, but i still have trouble keeping my eyes focused on what I am looking at. This fluctuates.

my PM doc told me to see a neurosurgeon for my neck and neuro-opthamologist for my eys but my GP sent me to a reg neuro since it has been years. This neuro said i have lyme now, but did not before, which makes no sense to me, since I used to be very active outside in the woods and now I do almost nothing but lay in bed or take care of my kids. He also said i have fibro, but every other doc said i do not because i do not have tender points which this doc did not check for. Do they still go by tender pooints or is that outdated?

i can't afford to go to every doc there is, but i am so scared. neuro-opthamologist, neurosurgeon, infectious disease, i was even told to go to an allergy doc because they can't find a cause for the edema that comes and goes. where do i start? what do i do???? Please Help! Thank you.

Last edited by pd5; 11-23-2010 at 07:10 AM. Reason: I still wasn't clear. sorry :)

 
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Old 11-21-2010, 10:29 PM   #2
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Re: very scared, losing vision and use of hands - Please help!

Lyme Disease was the first thing I thought of too, and it sometimes takes a long time before tests are conclusive. An infectious disease specialist would seem like a good resource. Other conditions to consider would include MS, ALS, and other neuromuscular or auto-immune disorders.

One thing to consider about the jittery brake lights you noticed: many newer automobile sold in the past several years use "multiplexed" lighting systems. The solid-state lamps used in these systems are turned on and off at high frequencies, but some people's eyes are more sensitive to the flickering than others. The flickering tends to be more noticeable at night, so don't worry if some lights on the rear of vehicles appear to flicker. It can be disconcerting and a bit of a nuisance, but it probably doesn't indicate any loss of vision.

 
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pd5 (11-23-2010)
Old 01-12-2011, 02:34 PM   #3
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Re: very scared, losing vision and use of hands - Please help!

Fibromyalgia is still diagnosed by having pain during manipulation of a majority of tender/pressure points, though it is often a diagnosis made by exclusion of other diagnoses. As to the possibility of Lyme Disease, it is not unusual for early tests to miss it.

An epidemiologist might be able to help you, and you should also be tested for lupus, MS, RA, and other auto-immune disorders if you have unexplained symptoms and/or symptoms that are not responding to treatment.

Besides the meds you mentioned, have you had other therapies? The edema can be caused by medications, so I hope your PCP is monitoring your condition and offering suggestions.

If you have fibromyalgia or related conditions, you might respond well to Lyrica, though there are of course many other meds worth trying. Lyrica just happens to be the "go to" medication for fibromyalgia, so I thougt it was worth mentioning.

Please let us know what happens after your next doctor's appointment, okay?

Quote:
Originally Posted by pd5 View Post
I tried to explain this better than before, but I am very scared and really don't know what to do. Please if you would, give me your opinion.

Several years ago, I went to many doctors because of weakness, fatigue, and pain they could not find a cause for, but told me was "nerve" pain. I could barely walk and needed a cane. I ran out of money and gave up looking for a correct diagnosis, and went to PM dr. for management instead. I was doing fine on kadian and zonisamide and Lidoderm patches for several years. The pain lessened to managable, my legs were working better, and I was left with fatigue, weakness in my arms and random pitting edema.

Now I am terrified, because my hands are so weak. they do not feel or work right, I often cannot open them properly or turn my hand palm up if I am holding something. Many times I cannot lift my wrist. I keep dropping things, typing badly, and I often need to move very slow just to complete simple tasks like serving a spoonful of pasta from a pot to a plate. life has become very difficult.

Even more scary is my eyes. I cannot focus very well. things still have sharp edges (sort of), but i struggle to see them. sometimes things are double, especially when reading or driving. Covering one eye makes double vision go away, but i still have trouble keeping my eyes focused on what I am looking at. This fluctuates.

my PM doc told me to see a neurosurgeon for my neck and neuro-opthamologist for my eys but my GP sent me to a reg neuro since it has been years. This neuro said i have lyme now, but did not before, which makes no sense to me, since I used to be very active outside in the woods and now I do almost nothing but lay in bed or take care of my kids. He also said i have fibro, but every other doc said i do not because i do not have tender points which this doc did not check for. Do they still go by tender pooints or is that outdated?

i can't afford to go to every doc there is, but i am so scared. neuro-opthamologist, neurosurgeon, infectious disease, i was even told to go to an allergy doc because they can't find a cause for the edema that comes and goes. where do i start? what do i do???? Please Help! Thank you.

 
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