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Old 05-15-2006, 02:21 PM   #1
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no doctor knows what is wrong with her

We desperately need your help and I hope someone on this board can recognize these symptoms and give this family some direction. A friend's 18 year old daugher woke up two weeks ago with hives all over her body, and muscle swelling....36 hours later she was in the hospital and has been in intensive care ever since. NObody knows what is wrong with her, and she is in so much pain throughout her entire body, even morphine doesn't help. Her dad said when he helped her to the restroom yesterday, she was screaming because of the pain, you simply cannot touch her anywhere. What on earth is wrong?? They have done blood tests, muscle biopsy, every test you can think of, and they don't show anything. They have tested her for Lupus, Rhuemetoid Arthritis, anything and everything, they have 8 doctors on her case right now and not one of them can identify her symptoms and what is causing them. The hives are gone, but she's had this incredible pain throughout her whole body for almost two weeks now, if you so much as touch her she screams, and says even her heart hurts.
Can anyone at all on here help? Does this ring a bell with anyone at all??

Last edited by kellie2; 05-15-2006 at 02:22 PM.

 
Old 05-15-2006, 05:28 PM   #2
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Re: no doctor knows what is wrong with her

Gosh, it doesn't ring a bell at all. The first thing that I thought of was some sort of allergy. Have they done any allergy testing on her at all? Is she eating on her own? She has pain all over? Did they do a CBC on her? If so, that would at least tell you that something is out of whack. If no one can help hr where you are, maybe getting in touch with the mayo clinic would have some answers for you. Maybe you can call a pharmasist and explain her symptoms. I hope and pray that she recovers very soon!!!

 
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Old 05-16-2006, 03:32 PM   #3
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Re: no doctor knows what is wrong with her

Toxic Shock Syndrome?

 
Old 05-16-2006, 05:48 PM   #4
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Re: no doctor knows what is wrong with her

It was definitely HIVES?? It sounds a lot like shingles, but they don't look like hives as far as I know! (I never had shingles and never saw them, I'm sure the doctor would have known that), but that would cause one to break out all over the body, be in pain, and the pain persist after the rash goes away.

 
Old 05-17-2006, 07:18 AM   #5
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Re: no doctor knows what is wrong with her

if there is nothing actually 'there' that you can see that would be a possible indication of a problem,well it does sound like some sort of neuropathic type of pain or pain syndrome.neuropathic just means that it is stemming from the nerves.the thing is,what caused the hives to appear and was the pain actually a part of that or was the neuro pain actually triggered by some sort of possible 'damage or affectation "it had on the nerves?this sounds really truely bizarre actually.is there ANY possibility that the docs have stated that those hives could have with any possibility have been shingles?this would kind of "fit" with thetype of onset and the resulting pain syndrome she appears to have.

I suffer with quite an array of different types of neuropathic type pain syndromes all due to different types of actual nerve damage.some is from sympathetic nervous system damage and the spinothalamic tract damage inside of my spinal cord.One is called RSD or complex regional pain syndrome,and the other(from the thalamic)is called central pain syndrome.

I would hughly suggest you start looking at some good neuroanatomy sites and read about neuropathic pain syndromes and their possible causes,thsi may at least help you and her family to try and understand what she really IS dealing with here.this type of pain will usually NOT respond to any of the more potent opiate based meds(narcotics)as you are treating a nerve and not an actual painful type injury or something,do you know what I mean?The fact that you stated the morphine didn't help also would back up the neuropathic pain theory.this type of pain actually reponds to things like anti siezure meds(they work for epileptic by calming down the out of control nerve signals that normally trigger their siezures?so in theory,these types of meds will also calm down out of control pain signals)i use gabitril and was on neurontin before that,these meds really were the only type of meds that actually gave me any real relief.I was on very high dose narcotics which did absolutely nothing for me.some types of the tricyclic anti depressants also will possibly work,like elavil(amitriptyline?).

the big thing here is actually finding out what really triggered the hives and what is causing the lingering neuro pain,and are they actually part of the same process or actually non related..i do hope she has some really good neurosugeons working on her case.neurologists just really don't have anywhere near the amount of good experience and overall working knowledge of a neurosurgeon,trust me on that one.

going to a good university teaching hospital is also a good place to go for answers when you are dealing with the more bizarre types of medical problems,really.they just tend to see the worst of the worst and the really obscure types of diseases and conditions.I do think seeing the head of the neurosurgery dept there and having an eval done would be ra really really good place to start.I didn't get any real good answers about my spinal cord issues until I went to the university of MN where I live.the head of NS there had over thirty years of experience and was very knowledgeable about my particular spinal cord cavernoma.

right now,its kind of a guessing game til the docs can start getting some more definitive medical infor.hopefully they will be able toa ctually Dx the real issue and be able to treat it properly.the bidg thing right now for her is that she is recieving the best pain control possible.if the strong narcotics are not really working,trying the meds I mentioned would be some very good alternatives.I am sure that her docs have actualy figured out by now that she does indeed have some sort of neuropathic pain syndrome and are treating her with those appropriate types of meds.

I really do feel for her as I know just how excruciating this type of pain can be.start googling neuropathic pain or their syndromes.this will at least give you some helpful info about this type of pain process.

please keep me posted on just how things are going,K?i will be hoping for the best for her.FB
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Old 05-17-2006, 07:39 AM   #6
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Re: no doctor knows what is wrong with her

Hmmm, hives and angioedema? I'm thinking along the same lines as singer1, that this could possibly be some sort of allergic reaction.....

 
Old 05-18-2006, 08:14 PM   #7
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Re: no doctor knows what is wrong with her

Hello just responding to your hives, yes I have had those allover my body. Had to get shots just to get rid of the pain and itchy feel. Had numerous test done, couldn't tell me nothing but my white blood cells where overrinding my red blood cells. but they did not know how to prevent them from comming back. So I went to looking into alternative medicine and found limu, this is why I have no more out breaks . and still don't know why or how I got them, sometimes it was worse than others.

 
Old 05-19-2006, 08:42 AM   #8
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Re: no doctor knows what is wrong with her

Have they been able to find out what has caused the hives? As far as the pain goes have they tested to see if she has RSD (Reflex Sympthetic Dystrophy) It may be causing the pain all over her body.)
Hope she is feeling better soon!

 
Old 08-04-2006, 07:20 PM   #9
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Re: no doctor knows what is wrong with her

i cant even begin to tell you what is wrong. but i do hope it works out for you guys. take good care.

 
Old 09-09-2006, 10:27 PM   #10
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Re: no doctor knows what is wrong with her

Quote:
Originally Posted by Sunlover
It was definitely HIVES?? It sounds a lot like shingles, but they don't look like hives as far as I know! (I never had shingles and never saw them, I'm sure the doctor would have known that), but that would cause one to break out all over the body, be in pain, and the pain persist after the rash goes away.

Shingles does not go all over the body. Shingles without the rash can be painful but shingles itself the first time you ever get it you get a rash of blisters and those are not all over your body its only in one area and makes a half circle.

 
Old 09-11-2006, 02:13 AM   #11
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Re: no doctor knows what is wrong with her

If nobody knows what is wrong with her, it could be undue mental emotional stress or something along those lines. Anyway, I'm not a doctor, but if they don't know what it is, you might want to get her psychological therapy - hives can appear in extreme stressful life situations. It's sounds like she's being tormented. This isn't exactly factual medicine, but you might want to have a church pray for her. Seriously.

 
Old 09-11-2006, 02:21 AM   #12
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Re: no doctor knows what is wrong with her

I had a similar symptoms to this about 3 years ago and it turned out to be a serious case of Erythema Nodosum.

Hope she gets better soon xxx

 
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